The Fighting Toad ©

Epilogue

2010-09-08T22:35:00.000-04:00

Today marks one month since my heart broke and a large piece of it traveled with my Toad to heaven.

The boys and I are doing as well as could possibly be expected. We talk to each other a lot, cry together a lot, and even cling to each other when we need to.

Obviously, the three of us haven't gone a single second without thinking, missing and loving Johnny. I still expect him to come home, there is so much I have to tell him . . . but, I know.

School has started and with that comes the comfort of a schedule that needs to be followed. I am still off work with my ankle/foot fractures, and appreciate this time that I've been given to be the mom my kids need right now. I've pledged to love them as much as both me and Johnny combined.

I'm doing quite a bit of soul searching where returning to work is concerned. No plans as to what capacity or how much I plan on working when I go back, but I know that there are drastic changes that I have to make due to the nature of my job and the need to be home for my boys. I am praying daily for guidance.

I can't even begin to use the words "Thank You" again, because it isn't enough. Every need has been met and that makes moving forward so much easier to tackle. Every one of you have made that possible. I love you all.

This will be the last post for The Fighting Toad. Since it was started to chronicle Johnny's cancer journey, his death was the final chapter. Thank you for staying with us on the journey and please keep our family, our entire family, in your prayers for a very long time.

I have been asked if I plan to continue writing and the answer is: I don't know. Maybe once my head is clearer and I have everything settled I'll start a new blog. . . maybe. I'll let you all know.

Here are a few things that Johnny lived by that I'd like to leave you with:

Surround yourself with good people.
Do the right thing, even if you are the only one doing it.
Be a good friend.
Follow the rules.
Love completely and say it at every opportunity.

May God continue to bless us all.

So long for now, my Toad Prince

2010-08-10T02:33:00.000-04:00

Where to start. . .

When I wrote last I knew we were getting close to the end. I had NO idea we were that close.

In my last post I had failed to mention that when we got home on Wednesday from the hospital, Johnny and I laid down to take a nap. When I woke up, he wasn't in bed. As a matter of fact, he wasn't even in the house. I heard him outside yelling at the dogs to get in the house. I rolled my chair out to the kitchen and found him standing in the garage trying to get Soleil to cooperate and get in the house.

"What are you doing out here?" I screamed at him.

He told me he had taken a walk back into the woods to see how in shape he was for bear hunting. He came in the house and was walking around so strongly on his own. It had been months since he had been able to walk with a solid/strong gait.

"Wow, Look at You!"

"I know, I feel great."

"Well, DON'T YOU EVER DO THAT AGAIN!!! YOU ARE BARE-FOOTED AND WHAT IF YOU WOULD HAVE FALLEN DOWN!"

"I made sure I stayed where you could see me if I was laying on the ground."

That's my Toad.

Thursday came around and I was surprised that he was showing some signs of muscle weakening and the start of the familiar confusion I had come to really hate. He was still conversational, and when Jim and Molly picked up the boys to go to Cedar Point, the boys kissed and hugged their dad. Johnny told them to go and have the best time EVER. They both left with, "I love you, Dad." being their last words as they walked out the door.

Thursday continued with the confusion worsening. By Friday, he was mostly sleeping and didn't do any talking. He would respond to me, but most of his responses were either hard to get out or not appropriate.

The hospice nurse came on Friday afternoon and did an assessment. When she was done asking him/me questions, she asked me to come into the kitchen so we could talk.

"I have just met you, so I don't know how much you want to know."

Hello, it's me, so of course I said, "Everything."

She said, "He is progressing even faster than I think you realize."

"So, the 2-3 months that Dr. Ansari said is probably pretty optimistic?"

"Making it to the end of this month is probably pretty optimistic."

Long Silence. Those little twinkly lights started to show up in my vision. Deep Breaths, Deep Breaths.

We continued to talk about comfort measures and made sure that we had everything in the house to make this possible. I asked about food and fluids. Her response was that it wasn't really necessary any more. He would soon lose his ability to swallow, and there was really no point in forcing him, which would only lead to having the food/fluids go into his lungs.

She said that soon he would lose bodily functions and may begin to get agitated easily. She gave me instructions for every scenario she could think of. She also made sure I had the Hospice number in strategic places around the house.

Wow, that was a lot to absorb. I've always considered myself a realist, but I thought she was talking about things that I had days to weeks to prepare for.

At bedtime Friday night, I told him everything the nurse had to tell me. He was pretty lucid at the time, and I think he understood most of it. I cried on his shoulder for a long time while he rubbed my shoulder. I said, "I'm losing you and there isn't any thing I can do." He said, "I'm ok. You'll be ok." I asked him again if he was scared and he replied, "Never."

I spent the rest of the night telling him how much I loved him and how happy he made my life. I told him some of my favorite stories of "us". He squeezed my hand and said, for the last time, "I love you, Babe."

He woke up Saturday and was basically in the recliner all day. He went back to bed about 4 in the after noon and started moaning and was starting to lose consciousness, intermittently. A build up of secretions had started which was making him sound like a motor boat with a weak engine. As the evening progressed, so did the secretions. By late evening I called Hospice for some direction on how to handle this level of fluid. They told me what to do and I did it. For about 10 seconds it seemed be better. Over the course of the next two hours I called twice more. I really found it hard to believe that I was struggling with this so much. I felt like I was letting him down.

At about 1 a.m. Jimmy came over (to pick up kids from Bryanna's campfire next door) and just stopped in to see how Johnny was doing. Having him with me was a gift from God. I am so glad that I wasn't alone with all that was going on. He helped me try to get Johnny comfortable by sitting up, laying down, whatever. Nothing would stop his agitation. I called Hospice again while Jimmy was here and just asked if someone would come out and check him. At this point Jimmy and I both thought he sounded like he was drowning.

Within the next couple minutes, Johnny's agitation subsided, he became still, and took two very deep breaths and then stopped breathing altogether. Jimmy and I looked at each other, and the only thing I could think to say was, "Oh, no, Jimmy."

And then his 13 month struggle had ended. While my heart broke, I thanked God for his mercy in not having Johnny linger and struggle.

It is my belief that when Johnny took his walk in the woods, that was his "sudden burst of energy" that the terminally ill seem to get. I also think this was his turning point for deciding that he wouldn't be strong enough to bear hunt.

I miss him each minute with everything I have. I loved him and he loved me. That isn't something that death takes away.

My eyelids are no longer cooperating, so I am closing for now. There is so much in my heart that I still have to share.

Quickly, here are the arrangements:

Visitation:
Thursday, 2-8 pm at Halbritter on Main St, Niles
We are encouraging people to wear their Fighting Toad shirts if they have them. It's what Johnny will be wearing!

Funeral:
Friday, 2 pm at the Hope Community Church, Lake Street, Niles

Luncheon to follow:
Niles High School Cafeteria, 17th and Eagle St, Niles

Memorial Contributions can be made to the Brian Parker Memorial Foundation.
A college fund has been established at 5/3 bank for Quinn and Jake.

God Bless us all.

Not enough time . . .

2010-08-07T23:45:00.000-04:00

Our hospice nurse, Deb, stopped yesterday to do a complete check on Johnny. She was very thorough and asked many, many questions. I liked her instantly. I think in Hospice training they must have a class on speaking calmly and quietly, but with confidence.

After her review of Johnny we went to the kitchen and she said, "I don't know you yet, so I don't know how much you want to know." I do know me, so of course I said, "Everything. And I want it straight."

"He is moving along very quickly."

Long silence followed.

"So you think the 2-3 months Dr. Ansari mentioned was generous?"

"I think making it to the end of the month may be generous."

While she was here, Johnny was still able to talk a bit and answer questions although I had to fill in the blanks of his confusion. In just one day's time, he is unresponsive, incontinent, and moans pretty much non-stop. I don't believe he is in pain, but I do give him his medications as directed by Hospice so that I know he isn't suffering. At times he is agitated, but that is usually only for a few minutes at a time. His wakeful periods are minimal.

The boys came home today from Cedar Point with Uncle Jimmy (not a Boo) and Aunt Molly. When they left on Thursday, Johnny was still able to have a decent conversation. They were devastated to walk in and see him in this condition.

We took time for the four of us to lay together in our bed and talk about what Dad is going through and how long it could possibly take for him to pass. As I have mentioned before, I feel like their childhood's have been ripped away from them. It was in their beautiful eyes and on their sad little faces today.

Quinn asked if it was wrong to want him to die soon. I told him that is was my shared prayer that if we can't keep him, then we would like God to be merciful and bring him home as quickly as possible. Jake wants him to be cremated (which is Johnny's wish as well) because he doesn't want him stuck in the ground.

Tonight I had to call Hospice to get direction for Johnny's uncontrolled secretions. His cough isn't strong enough to manage them and he was having a hard time breathing and was doing a lot of coughing in response. I gave the medicine that they provided and have noticed that over the past hour or so, he no longer sounds like a motor-boat trying to start up. His moaning is nearly constant, so I just try to whisper to him or rub his back. I don't think it helps him at all, but it helps me.

I'm trying to stay strong by meditating. Ok, not the "hippie" type of meditation or the Ashram kind, just closing my eyes and trying to find the calmest spot I can find and stay there for as long as possible. I only allow pleasant thought and beautiful images there, and I always hold Johnny's hand while I'm doing it. I truly feel him calm along with me. I don't have a mantra or anything, but just sitting still and being calm and quiet has a very positive effect on me. I plan on continuing to do this even after Johnny has passed.

Do I have a feeling at all on how long I think it will be? No, not yet. I know that he has already gone 3 days without any food/hydration. I just can't see him going on much longer, and truly it is too hard to watch my Johnny not actually be here while he is laying in our bed. I already miss him so much.

Dear God, please bring him home to you quickly.

Major Decisions

2010-08-05T22:54:00.000-04:00

Five days in the hospital . . . Let me just say, “WOW”.

As I’ve been talking a lot about lately, Johnny’s fluid balance got the best of us once again which landed him in the ER with an admission to the Oncology floor.

Last Saturday was Matt Brawley’s (and Mrs. Brooke Brawley) wedding. Johnny was adamant that he was going to that wedding. He wouldn’t take no for an answer, and to tell you the truth I didn’t try really hard to say no.

He complained all morning about excruciating stomach pain across the middle of his abdomen. I knew he was terribly dehydrated, too. After Matt and Brooke’s beautiful wedding, I brought Johnny home and before he even got back into bed, he said, “I need to go to the hospital.”

I knew it was bad if he was telling me.

In the ER, they started him on fluids and drew labs, etc. We knew from the last abdomen CT that he had an inflamed pancreas and now we had reached full blown pancreatitis. Don’t ever wish pancreatitis on your worst enemy. It is terribly painful, and treated mostly with “gut rest” or in other words no eating or drinking.

Over the course of his admission, we reviewed his medications and pain management and have made several changes where that’s concerned. Improvements have all been working nicely.

Chemotherapy was scheduled for Monday morning, but since he was inpatient, we obviously didn’t go. Instead, Dr. Ansari came to us. We had a long heart-to-heart. Dr. Ansari explained to us that we can see on the CT that Johnny’s belly is fully affected by cancer now -- lymph nodes are getting even more involved, there is inflammation of the entire mesenteric area and his pancreas is terribly inflamed (although not yet invaded by cancer). There are now mutliple nodules in the lower lobe of his right lung and the chest lymph nodes are increasing in size and number.

We are losing the fight.

The difficult decision to stop all chemotherapy was made. Dr. Ansari said he didn’t want to go back to the infusion center to tell the girls, because they all have fallen in love with Johnny. Who could blame them?

I asked if we were still on track with the time frame he had initially told us in May, which was about 6 months. He said at this point it looks like 2-3 months, but Johnny is a strong-spirited guy and didn’t commit to a definite number.

Johnny told him that he wanted to go home and Dr. Ansari agreed and said that as soon as the pancreatitis had calmed down we could go. When that time came, he said that instead of having Johnny come back to the ER every time he needs fluids, he wanted us to go home with Hospice Care.

Hospice? Oh my God, that is for people who are dying. And my Johnny needs Hospice Care? How did that happen so soon?

We have met most of his Hospice Team, and if you’ve ever heard anyone talk of Hospice and how amazing the people are, they are right. Every encounter we have had so far has been incredible. Johnny’s comfort is the number one concern. They told me, “We are your 911 from now on. You call us day or night when you have a need. We are here for you, Johnny and the boys.” It is very calming to know I can keep Johnny here and they will come to him if he has another crisis.

Johnny is feeling much better, but still sleeps most of the time. When he wakes, he is usually talkative and jokes around. When he is listening to conversation, his eyes are closed, but he stays involved in the conversation.

Please pray really hard for the boys right now. They understand that our time is short and it is becoming so much more difficult knowing that saying a final goodbye is creeping closer daily. Quinn is wearing his emotions on his sleeve and tries so hard to be brave and strong. The two of us had a good talk/cry together last night and I know that eventually we will all be fine again. I love that he loves his dad so much and we talked about how lucky he is to have a dad that has been involved in his life from day one. His uncles will all foster his love of hunting and fishing and he is such an “old soul” that I know I will be able to lean on him on days when I feel I can’t stand on my own.

Jake tries to stay involved with his friends as much as possible and still manages to keep himself involved with Johnny, although to a less physical degree than Quinn. Jake’s network of friends and “other mothers” will make this situation more tolerable for him. I’ll also be able to lean on Jake and his humor when I am having bad days.

Together the three of us are invincible.

Lately I have been reading a lot and working on finding peace and understanding. I know I am a strong woman and will eventually (with my boys) be ok. I refuse to ask, Why me? Or Why Johnny? That just doesn’t make anyone feel any better.

I will spend the rest of Johnny’s days making it my duty and my honor to help him feel the best he possibly can.

We still love to have visitors, but I know you will all understand when I say that I have to limit the number of visitors per day/week. If you are interested in stopping by, please just give us a jingle first and we can determine if it is a good time or not. I know you will understand if it just isn’t a good day, and we will try again later. Also, please understand that sometimes we don’t answer the phone (We do not have caller ID, so we aren’t screening, I swear!). We may both be sleeping, talking, or just not in a position to carry on a conversation. Leave a message, or try another time. We want your calls! Promise!

Thanks to everyone who have asked about my legs. This I can tell you: One broken ankle sucks, add to that a broken foot and it is downright cruel. I am please with the answer to my prayers to stay home with Johnny, but struggle with how badly my physical body has let me down. Nighttime is the worst because by then the cam boots feel like I am wearing my dad’s snowmobile boots with lead weights in them. They are heavy, hot, and annoying. Especially when the Velcro sticks together and I can’t get my legs apart in the middle of the night. I’m telling you, someone should put a secret camera in my room if they want to win AFV’s $100,000 grand prize!

My multitude of thanks continues to everyone providing comfort for my family. Whether it is food, prayer, visits, whatever . . . Thank you so much.

Good Calcium, Bad Tummy

2010-07-27T23:00:00.000-04:00

We took a quick trip to the infusion center today to check on Johnny's previously critical Calcium level. Good news! Perfectly Normal. Thank you, Lord! The Aredia did its job and drew the calcium back into the bones where it belongs!

While we were waiting for the results, they loaded him with a litre of fluids . . . Never hurts! He told the nurse that his only complaint was that his stomach was hurting a little bit. So, while the fluids went in, they gave him anti-nausea meds through the port as well.

The tummy troubles continue to plague him. There is such a fragile balance between his fluid levels and constipation as they both relate to amounts and types of medicine he is taking. Before you know it, it has been four or five days since he has had a good poop. Arrghh! So, we are walking a tight rope with his fluid levels (although labs today showed he wasn't dehydrated) and still have to deal with the poopin' issue. He has stayed very quiet all day as we've been working on getting things moving along in the GI tract.

Johnny will have a CT of his chest, abdomen, and pelvis on Thursday. This will determine if there has been any advancement of the disease, if things have stabilized, or if he has been the recipient of the miracle for which I have prayed for months. Even if the scans look bad, I don't plan on stopping my Miracle Prayer any time soon. Have you ever met anyone more Miracle Worthy? Me, either.

In other Brawley news: Jake is sporting a mouth full of metal! He got his braces today and has quite the sore mouth tonight. He was not happy that I made his appointment for 8 a.m. I don't think he has seen 8 a.m. since school let out. However, since he was so tired he actually SLEPT through getting his braces on. The orthodontist said that was a first! He came home and slept most of the day away and is now raring to go. He'll be up all night, no doubt.

Many thanks to all of those who contiune to pray for and provide for my family. There is so much good in this world.

Monster Hiccups and More

2010-07-24T23:02:00.000-04:00

Weird dreams, strange pains, jumbled emotions, and confusion have been the calling cards of this past week. You’d think I was talking about Johnny, but all of those things pertain to both of us now.

I’m already over this whole broken ankle/foot gig. Seriously, this is absolutely the most annoyed I have ever been with my physical self. I think I am a lot better at being a care-giver than care-receiver. But I won’t complain because there are a whole lot of people taking really good care of me and the boys. Just frustrating, you know?

On Thursday we took a little jaunt to the Emergency Room because Johnny was SERIOUSLY dehydrated and talkin’ crazy. It was very scary for him and the rest of us. In his confusion, he thought we were talking about it being time for him to die. He even made the boys come say good-bye to him. It was the most difficult on the boys because they thought it must be imminent since he was saying good-bye. And, although very tough on me to watch him, I was pretty sure that it wasn’t yet time. He ended up receiving three litres of fluids and once again, he was back (or at least close) to his right mind. While we were there, they did a chest x-ray and a CT of the brain just to check on things. Both were clear. Thank the Good Lord.

Once we were home and settled down a little bit, we explained the confusion component of dehydration to the boys and that we may have more episodes like this in the future. It has to be hard on their heads and hearts to process this all; I know it is on mine.

Since the trip to ER, Johnny has been drinking fluids around the clock. He remembers the confusion enough that he has found new focus in maintaining his fragile fluid balance.

Hiccups have become an annoyance for him daily, too. Because the liver sits right below the diaphragm, and an irritated diaphragm causes hiccups, it was inevitable. It wouldn’t be bad if they were normal little “excuse me” types of hiccups. These are the Monster Grand-Daddy of All Hiccups. He sleeps mostly on his back now (ever since surgery) and when he is totally relaxed and his mouth and oral structures are too, a hiccup erupts like a prehistoric dog bark. The first time he did it, I actually shot out of bed. I had NO idea what had just happened. I thought it was a lot more than a hiccup. They are so loud they actually wake Johnny up. We have discovered that if he drinks something right after he starts, it minimizes the duration, and if he rolls on his left side they are less frequent and less severe.

We will go to the infusion center for lab draws on Tuesday to check primarily on his calcium level, but the rest of the values as well -- like his electrolytes. I go to the doctor on Wednesday to check on my ankle/foot. Jake gets his braces on Tuesday. Quinn remains doctor appointment free for this week. He wins the prize.

SIDE NOTE: Thanks to the Class of ‘85 for calling in a toast tonight during the class reunion. We really wish we could have been there. It meant a lot that you guys were thinking of us. See you at the next one.

ADDITIONAL SIDE NOTE: To our families -- we love you all so much. Thanks for the non-stop care.

Overwhelmed

2010-07-20T22:40:00.000-04:00

My current mental state is "OVERWHELMED". Can you imagine?

This will be short tonight, because my angry left ankle is telling me it is pill time, and I never argue with an angry ankle.

To all that attended the Birthday Bash. . . . umm . . . . Whoa. I felt like I was in a Vortex of humans and loved each minute of it. Waiting for the official count from tomorrow's closing meeting, but it looks like around 900 people attended the party. That's right: NINE ZERO ZERO. Amazing. What an amazing display of love for the most amazing man I have ever had the privilege of knowing.

Thanks to every single person that made it possible and I know there are so many of you that I am afraid to name names for fear of missing someone. I love you all.

With my ankle and foot now unusable, we have had to slow way down at our house. Not a bad thing.

If you aren't aware, the Thursday before Relay for Life I fell down two steps walking out to the garage and pretty much wrecked my left ankle (comminuted displaced fractures of both the tibia and fibula) and broke the 5th metatarsal in my right foot. I had surgery to fix the ankle on the Wednesday before the Birthday Bash and was the lucky recipient of 3 plates, 11 pins, and 2 screws. Both are non-weight bearing injuries, so I am wheelchair bound. I do have permission from the doctor to use a walker with my cantilever boot on my right foot so that I can hobble to the bathroom and back to bed to elevate, elevate, elevate.

Breaking both legs really wasn't in my plans for fun things to do this summer, but lets look at the silver lining in all of this, shall we? My right foot requires 4-6 weeks of non-weight bearing. My left ankle requires 4-6 months of non-weight bearing. This means I cannot work. Do we see where this is heading? I am on disability until my ankle heals which means I STAY HOME! Staying home with my Toad is a gift. Every single minute I get to spend with him is a gift. I wouldn't say that breaking my legs was how I would have gone about this -- I was thinking a lottery win would suffice -- but I'll take it. The only reason this is working at all is because of our families. They have had to work non-stop to keep us going. I love them all! Quinn has really stepped up to the plate and has been an incredible help to us. He's growing so quickly and takes this very seriously. He checks on us every night before bed for filled water glasses, snacks, etc. I am so incredibly proud of him. Jakey plays things off with humor (I have no idea where he gets that!). He also keeps himself uber busy so that he doesn't really have time to think about it. That's ok, too. When he is home, he is very attentive as well. He's just harder to nail down.

Johnny had chemo yesterday and was super dehydrated. They gave him a total of 2 additional litres of fluids. It is amazing to me to see him change color before my eyes when he receives fluids. Most of his labs have remained stable, but his calcium level was critical. We had to go back today to receive an additional infusion that will pull the calcium back into the bones where it belongs (Bonus!) and out of the blood where it becomes a toxin. Some of his bizarre behavior, especially while sleeping and dreaming may have been because of his calcium level. This is something we will most likely check every week now. We don't want to chase our tail with this. . . too hard to catch it once it gets away.

He was also near-critically constipated from the pain meds and dehydration. He was given an oral medicine that looked like something the Grinch whipped up. It worked, fortunately, and now that we have a hydrated Toad with working plumbing and a week to relax, I think we will see some pretty good improvement over the next week or so. My goal is to get 5 pounds back on him by his next chemo (today's weight: 170.6). We have some great plans in the work to make that happen.

Speaking of eating, Lori Brawley is acting as our Meal Coordinator again. If you would like to help with meals, please contact her and she will set you up with an available date. I cannot tell you how much of a blessing this is to us, especially now that I can't stand! (Not that my cooking is remarkable to begin with!)

My sister, Angie, has been helping out with the cleaning and dusting and such (along with a couple of friends) and I've had a lot of people ask if they could help. If you are interested in participating on the Cleaning Crew, please contact Angie.

Both Angie and Lori can be reached by Facebook, but the rest of the information I will post on the side-bar at the right.

Thanks for taking care of me and my family. I love being a part of a community where this just happens; it isn't expected or taken for granted. It just happens. I am so proud to be from Niles.

Back to Reality

2010-07-06T23:33:00.001-04:00

Seriously, I should have my blogger status revoked! I can’t believe how much time has passed since I last blogged.

I can tell you, we have been BUSY!

In a nutshell, this is what we’ve been up to:

Getaway weekend in Chicago

Blue Man Group
Ate at Rosebud (Italian)
Went to museums/aquarium
Ate at Smoque (from Diners, Drive-Ins, and Dives)
Watched Cubs beat the White Sox

Week in the Upper Peninsula with the Brawley Family

1 House
1 Bird
2 Dogs
23 People of all ages, shapes and sizes
1,000,000 memories

Cincinnati Reds Game

Quick trip to Jeff and Bernice Johnson’s house (Love you guys!)
Quinn dropped off with Cincinnati Reds at 12:30
Watched Reds batting practice ON THE FIELD!
Watched Quinn in the outfield with the Reds players shagging balls during hitting practice
Watched Quinn CATCH a fly ball to the outfield!
Enjoyed an exciting Reds vs. Phillies game in great seats
Watched Quinn work his butt off as Bat Boy for the entire game
Picked Quinn up at 10:30 pm after a FULL day with the team
Became a life-long Cincinnati Reds fan

Trip to Boyne Highlands with the DeCraene Family

Hang out by the pool and in the shade
Enjoyed the gorgeous weather
Ate lots of good food in the Slope Side Lounge
Watched the Young Americans perform in the Dinner Theatre
Enjoyed spending a little time with Bill, Robyn, and Lizzie (Love you guys!)
Watched the most amazing 4th of July parade in Harbor Springs.
Enjoyed being together with my entire family (Love you guys, too!)
Made another 1,000,000 memories

And today it is back to the unavoidable realm of chemotherapy. Ugh.

To be perfectly honest, the last two and a half weeks have taken their toll on Johnny. It was so important to him to be able to participate in all of our activities that he really pushed himself to his limit and beyond. There were many times that he needed to sit and rest and be an observer, rather than a participant. His activity level has decreased based on his lack of muscle volume/strength.

He has lost another 9 pounds.

From the lack of muscles and the increase in activity, he has had some pretty excruciating nights. Mostly from spasm. We have discussed pain control options with Dr. Ansari and are trying several new things, including a Duragesic patch and a Lidocaine patch. Both are for pain management. We also discussed Medical Marijuana, and Dr. Ansari is a proponent of that and wrote us a prescription.

At times he is having difficulty breathing. We mostly attribute it to the muscle spasms and the involvement of the diaphragm. After chemo today we went to St. Joe Med Center for a chest x-ray just to make sure there isn’t anything else going on. We will get those results tomorrow. I am nervous about the results of the x-ray knowing that there was mediastinal lymph node involvement two months ago. Could it have spread to the lungs already? I pray so hard that isn’t the case.

He is scheduled for another session of chemo on the 19th and we will discuss further treatments and the next CT scan. His labs weren’t really that horrible considering how exhausted he is. His Alk Phos continues to climb, but his other liver labs remain steady and in the normal range. Blood counts are OK, but his white count is back in the 6-7 range and that needs to come up a little bit to make me comfortable.

I have grounded Johnny for the next 5 days. He will stay in bed and close to the house so he has enough energy for the Relay for Life coming up this weekend. We hope that you will come join us, even if it is just to socialize! GO HERE for more information on the Relay. We can use walkers around the clock. If you are interested in walking call Angie (684-7402) and schedule a time slot. Bring friends with you -- the more, the merrier, right?

The following weekend is the giant Toad Birthday Bash/Benefit. It sounds like it will be an amazing party and I know there are a ton of people working to make it the best party ever! If you would like to help Ginger make some food, she said to give her a call (269-683-9001).

Thanks for sticking with us for an entire year. We feel the love and support surrounding us always.

Heading North

2010-06-18T00:35:00.002-04:00

Tomorrow we are heading to the Upper Peninsula with Johnny's whole family. John, Ginger, Jim, Molly, Andrew (and Kait, I think), Joshua, Dan, Aida, Skyler, Willow, Talon, Pooh, Melissa, Zack, Zoe, and of course, Johnny, me, Quinn and Jake: all together enjoying our quirky family and guaranteed to return home with a million stories to tell. This will be a week to remember for us all.

Two big events are heading our way very soon. Relay for Life (July 10-11) at Niles High School and the Toad Brawley Birthday Bash/Benefit on July 17th.

I will take the week up north to get my thoughts organized and then will post full details on both events as soon as we return.

We are looking to have an enormous team for Relay for Life with a bunch of people walking the track in Johnny's honor for the duration of the event. Even if you can only come to walk for one lap, please consider joining us. It would mean a lot to us! We need walkers as much as we do team members. Anyone interested in walking can either message me, FB msg, or email me with the time you are available to walk and I will sign you up.

The details that I do know are:
Opening ceremony: Saturday, July 10th at 12:00 noon.
Survivor ceremony: Saturday, July 10th at 6:00 pm.
Luminaria ceremony: Saturday, July 10th at 10 pm.
Closing ceremony: Sunday, July 11th at 8 am.

If you are interested in joining the team or making a donation, please go HERE and scroll down until you find our team name: The Fighting Toad. You can click on the team name for donations or "join team" to be added. We would love to see everyone there.

We plan on having birthday cake for Johnny at the Relay for Life on Saturday, July 10th at about 8:00 pm.

Speaking of Johnny's Birthday!!!

Some AMAZING friends are planning a pretty big party/benefit the following weekend (Saturday, July 17th) to celebrate Johnny's 44th birthday. EVERYONE IS INVITED!!! This is so huge, there is a planning committee and sub-committees. Crazy! This is a great opportunity for everyone to celebrate with Johnny and it promises to be one amazing night. This is a family party, so kids are definitely welcome. The party is from 4 pm - 10 pm at Roger and Shea Kulwicki's home (1409 Barron Lake Road, Niles) and will have great food, great friends and great fun. Please please please join us!

Until we return from the Upper, please continue to pray for us all. This trip will be very bittersweet for our entire family.

Also, our friend, Tom, is battling valiantly with cancer and really needs prayers for comfort. We keep his whole family in our prayers as well. Their son, Liam, and Quinn played on the same travel baseball team a few years ago, and our families have a lot of really great memories together. Tom, aka Lars, was our team mascot and could wear a Viking helmet proudly! Tara, I pray for you guys every time you are brought to my head and heart which is pretty much constantly.

340 Days Ago

2010-06-14T22:26:00.000-04:00

My first blog entry was 340 days ago. It wasn't a happy blog to start, but I felt an overwhelming need to keep our friends and family as up-to-date as possible with the diagnosis and treatment of Johnny's cancer. I never thought there would be a more difficult day in my life after that, but I was wrong.

The worst day came a week ago yesterday, Sunday, June 6th, 2010, when we had to tell Quinn and Jake that Johnny was now considered "terminal".

We have been completely honest with the boys from diagnosis until now. They have know the ups and down of the whole process. We actually found out at the last chemo session that we were in "salvage" mode. Trying to keep the lymph nodes in check for as long as possible. On his last scan I explained that there are many lymph nodes involved in both the upper abdomen and chest. As of now, nothing has shown up in the lungs, and we hope that it stays that way.

We decided to wait until the boys were completely done with school to tell them. I feel like the moment we told them is the official end of their childhood. They've been robbed. They will be robbed even further.

We sat down on Sunday night after Johnny wouldn't let me stall any longer. We had the boys sit in the living room with us, and Johnny started talking. His monologue was absolutely beautiful and part of me wishes I would have recorded it so I could remember his loving words to our boys forever. He first talked about what the doctor had told us, that nothing was working and there wasn't much left to try. We still have the "experimental" option out there, but we haven't committed to that. He then talked about how much he loves them and gave specific examples to each of them of things that he loves: Quinn's old soul and love of the outdoors, Jake's humor and compassionate soul for animals. He told them that he knows we will do fine because all three of us are strong together and individually, so when one of us doesn't feel strong, the other two will carry the load for a while. He told them both of his wishes for them in the future and his desire for them to follow their hearts and do exactly what they want to do for a career. He wants to make sure there are no missed opportunities in their lives just because he isn't around.

Johnny talked about the potential for a miracle. "If God chooses to spare my life on Earth, it is because I have work left to do here. If He chooses to take me, then I have work to do in Heaven." The calmness and reassurance in his voice was so soothing. It is hard to explain, but a real calmness surrounded the boys and me.

I wish I could say I was strong and stoic during the whole thing, but I sobbed like a baby. I'll never forget Quinn's piercing look into my eyes asking the question, "Is this THE TALK?" I simply and silently nodded as Johnny continued. I had always promised Quinn that when the doctor said he was terminal, we would have "the talk" as a family. To see him look at his dad with the knowledge that we had limited time left was soul-wrenching. Jake basically had the "I-told-you-so" thing going. If you remember from the beginning, Jake thought that cancer automatically equalled dying. I'm so sad for him that as his mommy I couldn't prove him wrong and make everything all better. As the boys would say, "Epic Fail!"

The last thing we talked about with them was Quality vs. Quantity. We obviously want him around as long as possible, but at what cost. Johnny told them that he would much rather feel good for 6 months and quit chemotherapy, than to feel awful for 9 months and continue chemotherapy. Fortunately, they are both at an age that they could comprehend this concept. As hard as it is to say out loud, I completely agree. It is an easy concept to buy into on the days that he is stuck in bed feeling terrible. Not so easy to buy into on the days that he is up and on the move, looking and feeling fine.

As Johnny's wife and Quinn and Jake's mom, I feel like I'm on a roller coaster. I want to be strong for them, and feel like I do a good job most of the time. Other times, I am a puddle and just can hold things together. I let the boys see me cry, because I want them to know it is fine to open the floodgates and let it out. I just try really hard to not make it a daily occurrence.

I know we have kept this news from the majority of you for a little while, and I hope you'll forgive us. Johnny was very specific in telling certain people in a certain order and timeframe before I put it on the blog. That is probably why I haven't blogged in two weeks. I couldn't think of anything else to say.

Now that I have that out of my system, I'll be blogging a bit more regularly. I promise.

And to let you know, Johnny's lab values all rebounded this week at chemo. His WBCs are back up to 7. I forgot to ask for a copy of his labs before we left today, but I know that everything came back up that was low last time. Hemoglobin was 11-ish, Platelets were 155. Better.

He received the same chemo as last time, and was again sent home without the 46-hour infusion. Dr. Ansari believes that there is really no use in compromising his overall health for the little (if any) benefit the 5-FU was providing. It is the other two drugs (Avastin and Oxilaplatin) that help with the lymph nodes.

Please continue to pray for us all. Johnny especially, Quinn and Jake, too. Throw me in there at the end if you have a second or two extra. My boys are the most important right now if you have a specific prayer order you follow.

We will be fine, I promise. As Johnny continually tells us, he has the easy job. . . it's those of us who will be left behind missing him terribly that have the hard job.

Prayers Still Required

2010-06-01T21:06:00.001-04:00

The great thing about holidays falling on a Monday is that you get an extra day off before heading back in for chemo!

We had an excellent Memorial Day Weekend, celebrating with friends from all over! Jimmy Jordan and his boys were here from Atlanta and the Johnson Family came all the way up from Southern Ohio to say hi. Not to mention getting to watch Quinn march in his final parade of Jr. High Band and spending Monday with my family, including my favorite uncle, Jeff. Johnny even went carp shooting with Pooh and suffered only minor injuries.

Overall the switch from the CPT-11/FUDR protocol back to the Folfox protocol with 5-FU has been a piece of cake. The CPT-11 protocol made him sick for 13.5 out of the 14 day cycle. It was horrible and he looked and felt terrible. He even told me that he thought he looked bad when he saw a picture of himself.

Today was the second cycle back on the Folfox/5-FU protocol and things went relatively well. Relatively. We have some issues with Johnny's blood counts. Everything is creeping into the crapper with his CBC (Complete Blood Count for the non-medicals out there). We aren't at the critical stage that would require transfusion yet, but we need to see a turnaround pretty soon.

As a matter of FYI, here are his current CBC values with normal ranges in parentheses:

WBC 2.71 (4.0-11.0)
RBC 3.76 (3.9-5.9)
HEMOGLOBIN 11.4 (13-17.3)
HEMATOCRIT 33.8 (39-53)
PLATELETS 115 (130-470)

In other lab news, his liver labs and others look pretty good:

GLUCOSE 97 (64-105)
BUN 10 (8-23)
CREATININE 0.66 (0.70-1.5) A little low.
SODIUM 139 (134-145)
POTASSIUM 3.5 (3.6-5.2) A little low.
ALK PHOS 139 (38-137) Liver lab -- just a tad high, nothing to worry about.
SGOT 25 (0-40) Liver lab -- Yeah!
SGPT 24 (8-45) Liver lab -- Yeah!

Because of his low blood counts, they didn't hook Johnny up to the 46-hour pump that he normally just LOVES to carry around. I feel bad that he isn't getting the full amount of chemo, but also hope that this means he gets to have another couple of good weeks before the next round. It should give his labs time to rebound a little bit. That is our hope, anyway.

We are sooooo looking forward to Friday and the kids being out of school. It makes it so much easier when we aren't dealing with school issues right along with everything else. I need a break, and I know the boys do, too.

We have quite a few things in the works for this summer, and I'll fill in the details with all of that later. Just wanted to check in with you and let you know that things are going fine here on Harrah Road (ok, not perfect, but fine nonetheless).

By the way, I am sooooooo very far behind on writing my thank you notes. Please know that I am working on them and I owe many, many, many people a thank you!

Please continue the prayers . . .

Busy Busy Busy

2010-05-26T21:44:00.000-04:00

We are still here, folks.

Spring sports and end of the year school activities have been running us ragged!

Johnny has done very well being back on the original protocol. This one is SOOOOO much more tolerable for him, and the amount of nausea/vomiting/diarrhea has been minimal. He has had a very good appetite again, which makes me happy. I'm hoping he can put a little weight on now.

Johnny has a couple of friends coming in from out of town for this weekend's Bass Fishing Extravaganza. It should be a weekend filled with fun, fishing and friendship. I'm happy for Johnny that he will be feeling at his peak for this weekend. He really needs this!

I'll report back after chemo on Tuesday, and until then please keep praying for his lymph nodes to respond to this good 'ol chemo.

Please join us on our Relay for Life team, too. In the next couple weeks I'll have the details for Johnny's birthday celebration at the Relay and will pass on all the pertinent information then. JOIN TEAM TOAD HERE!

Back to the old stuff

2010-05-17T19:29:00.000-04:00

The news from Dr. Ansari wasn't the best. He indeed verified that the cancer has spread to the upper abdominal lymph nodes and the the mediastinal (chest) lymph nodes as well. Also, the tumors in the liver have worsened even since surgery.

This very obviously means that the chemo isn't doing a thing to help, just making Johnny miserable. Dr. Ansari decided that since the original protocol (Folfox with Avastin and 5-FU pump) actually cured the lymph nodes along with the colon cancer, we may as well revisit that in the hopes of at least controlling the spread of the cancer to the lungs and beyond.

He will have four cycles of this protocol and then we will make more decisions. If it looks like there is some improvement, then we will stay with it for a while longer. If that still isn't doing the trick, then we are looking at experimental drugs. He mentioned a study that Johnny qualifies for, and we are willing to try whatever it takes.

We are trying to remain hopeful and positive, but the reality of the situation is that we are running pretty low on options.

I felt so bad for Johnny when he realized that going back to the old protocol meant coming home on the stupid grunting pump. He was also reminded of the cold intolerance that comes right along with it, too.

Please pray, my friends. We really, really, really need the chemo to start doing something to help. I can't think of anyone more miracle-worthy than my Johnny. I still believe it can happen.

Hoping and Praying

2010-05-16T22:56:00.000-04:00

Johnny has had some really good days this past week and some really bad nights. I feel bad that I haven't blogged much, but with the boys in spring sports things have been really busy. To be perfectly honest, I'm also having a lot of trouble organizing my thoughts enough so that I would make a lick of sense.

Tomorrow is a big day. We meet with Dr. Ansari and find out what direction we will be heading. As we see it, we will either continue with things as they are for a while longer and see what happens, try a new protocol of chemotherapy, or try some new form of experimental drugs.

Thanks for all the cards, calls, Facebook messages, visits, and meals. I continue to be overwhelmed by the support our community has provided. We are surrounded by so much goodness.

Please send up your most powerful prayers tonight and tomorrow. Again, we are facing the unknown and that is always the hardest part.

I will update as soon as I am able tomorrow and will also add information about the Relay for Life. If you aren't already aware, it is July 10 and 11 at the Niles High School track. We are looking forward to having a great team and a GIANT birthday party for Johnny.

Clearing out the fog

2010-05-10T22:13:00.001-04:00

There have been so many things rolling around in my head over the last week. I feel like I left everyone hanging with the dreadful news that the cancer has spread. I’d really like to clear up a few things that I may have left a little foggy.

We are still on schedule for chemo next Monday. However, we don’t know for sure if Johnny will still receive the CPT-11/FUDR protocols. If Dr. Ansari has reviewed everything and has decided that he believes the lymph node involvement to be a new finding, then the old protocols stop.

If he feels the lymph node involvement was there prior to starting up chemo again, then we will most likely stick with these protocols for a while longer and continue to watch the liver/lymph nodes. Avastin and Oxaliplatin may be restarted if he feels they will help the lymph nodes. Johnny received Avastin at the last session.

If it is determined that the chemo is doing nothing to help Johnny, then we start seeking experimental options. There are some amazing studies showing great promise. Every successful chemotherapy agent has had its start as a study drug. It may be just what we are looking for.

Please know one thing: We are not giving up. Neither one of us would ever give up on each other or our boys. Ever.

I have been questioning my focus quite a bit. Obviously when you get such soul-shaking news you start to think. Of things. Not always pleasant things. Scary things. Sad things. Things that you dare not say out loud for fear that they might come true. Things that you never thought you would be facing in all of your life. Things that absolutely can’t come true.

I have decided that my focus cannot center around the “what if” scenario and all the scary things that have crept into my mind. My focus must center on the fact that we still have hope. We still have options. I still have Johnny. I will not let him go easily, I can tell you that.

My faith in God and the power of prayer is just as strong as ever. Again, though, I feel like it has taken the back burner to my fears. I had a nice long conversation with the Great Healer the other night and I apologized for not thinking He could do His job. Of course He can. And I can’t think of anyone more worthy of healing than my Johnny. If this is a test of faith, then I certainly want to pass!

I have a whole lot of other things that have been cluttering my mind, and I will probably be unloading them on the blog over the next several days. It helps to get them out of my head and “on paper” -- so to speak.

Thanks to EVERYONE for the calls and visits. We love them!

Also, to the Niles Sluggers’ families: You Guys Are Amazing! Thanks for adopting us and feeding us for the last 10 days. It seems like just when things get rough for us, someone is there to help us through. The meals came at just the right time, a time when I just couldn’t even wrap my head around preparing meals and Johnny was too sick to take it on himself. Thank you, thank you, thank you.

Being part of the Niles Community is a huge blessing. I don’t know how we will ever be able to pay it all back. I’ll spend the rest of my life trying.

And now, I just ask for the prayers to continue.

Devastation

2010-05-03T12:18:00.000-04:00

Sorry, I won't be able to post much right now.

News from the CT is bad. Liver is worsening, despite both regimens of chemo. Cancer has traveled outside the liver to the mediastinal lymph nodes (lower chest) and in the upper abdomen.

Dr. Ansari is giving Johnny his regular chemo regimen today, and adding Avastin. He will evaluate our options and give us an updated plan in two weeks. We may be looking at experimental options next. Radiation isn't an option. Additional surgery isn't an option.

Heaven help us. Please.

Looking for Improvements Tomorrow

2010-04-26T22:13:00.002-04:00

Quick update tonight to get everyone praying in the right direction.

The weekend was relatively uneventful. Johnny felt good sometimes and borderline yucky at other times.

Since last Monday, he has only had one day of vomiting, and on and off diarrhea on a few other days. We consider that success.

I am contributing the success of the past week to three things:

Johnny's body has finally healed properly from the surgery back in February. That was a whopper of a surgery and I don't think the amount of time it takes to recover from a surgery of that magnitude should be discounted. He is physically stronger now that we are about 10 weeks post-op and I think the stronger his body becomes, the better he is equipped to handle what chemo keeps throwing at him.
The anti-anxiety meds that Dr. Ansari started him on a few weeks ago are definitely helping with the "anticipation nausea". Also, I think it is improving his overall outlook in general. He seems much more engaged over the last week when talking and being talked to. I think he will continue to feel better as the levels of the medication peak and are maintained . . . we will know for sure next Sunday night before the next cycle.
The Sancuso patch is to this protocol of chemo what the Emend was to the last one. I think it is relatively obvious when you go from 9 days of vomiting in the last round to only 1 day this time. There doesn't seem to be any adverse side effects from it either. Thankfully.

Tomorrow he has a CT scan at 9:15. I am scared to death/super excited. Minute by minute I alternate between tears and fear of the sneaky "What Ifs" that creep in and then I think that it will all be great news and the "peppercorn" lesions will all be gone in addition to some shrinkage of the big tumors. The problem is, I just don't know. Not knowing is so much harder.

I have a plan for both scenarios. If it is good news, you'll hear me no matter where you are. If it isn't the best news, then we move forward with what we are doing and assume that the stubborn tumors just don't know when to quit. We are prepared to find out that he hasn't been cured, we are just looking for a little improvement . . . any improvement at all would be nice.

If you don't have anything going on at around 9:15-9:30 tomorrow, we sure would appreciate a collective prayer from everyone.

Made it to Thursday!

2010-04-22T23:48:00.000-04:00

Ok, I will give the Sancuso Patch two thumbs up.

Johnny did get a bit sick today, but only after talking to a nurse from the infusion center about the Sancuso patch! I feel like that qualifies as "anticipatory nausea". And I will say that his color looks infinitely better than what it normally does during this point of chemo week. He has the nasty firerhea, too, but hopefully the Imodium protocol will take care of that . . . it usually does.

He ate a nearly normal amount of food today, and did a great job at getting fluids down. I preach and preach and preach fluids!

Hoping and praying for a calm and restful night for Johnny. I'd love it if you would joing me in this prayer.

Be Vewy Vewy Quiet

2010-04-21T21:10:00.000-04:00

Ssshhhh. I'm typing this as quietly as I can. Please read it silently, too, or just move your mouth if you must. I don't want Johnny's body to hear me. I just may jinx him if it does.

The patch is working.

No, really.

No vomiting yet. At all. As in none. OK, maybe a bit of the ol' firerhea, but even that hasn't been intolerable.

Johnny (and I) slept through the night even. That never happens on a chemo Tuesday!

He even ate dinner with us at the table tonight. My "World Famous Harrah Road Spaghetti".

I am just about to put my Toad in bed for the night, but I wanted to make sure I shared the good news with everyone. Please continue to pray for this Sancuso patch to continue with its magic. I know it will help his body feel so much stronger, and I believe it will help keep his lab values headed in the right direction.

I'm just so happy I could cry. Better get a glass of wine to celebrate instead. I'll just do it vewy, vewy quietly.

Round 4: This one is all Toad's #5

2010-04-19T21:07:00.001-04:00

If you'll recall, Dr. Ansari started Johnny on an a new medicine to help with the "Anticipatory Nausea" after the rough start to the last round of chemo. It was mostly successful.

Johnny had a GREAT day yesterday (Sunday) . . . He looked good, he sounded good, he even moved around like himself (well, almost). I could tell the new medicines were kicking in. No nausea or vomiting last night in anticipation of today at all. No vomiting today until he actually had the port accessed. We talked this over with the good Dr. and it was decided to go ahead and double the happy pills and to maintain the overall use of Ativan for daily nausea/anxiety.

Dr. Ansari continues to be concerned with the overall amount of nausea that Johnny is experiencing immediately post-chemo. We tried the HABR cream and that only gave minor relief overall, and certainly not worth it's cost when others (covered by insurance) do the job as well. So, we nixed that one. This week we are trying the Sancuso Patch. It is a 5-day patch that is basically a Zofran-class anti-emetic. (We like Zofran.) Fingers crossed everyone. Also, instead of Pepcid OTC, he switched Johnny to the more powerful Protonix (a proton pump inhibitor, for you medical types out there). I think that will also help with the nausea, since it will cut down significantly on the amount of acid reflux he experiences. We are really hoping these are successful. Dr. Ansari would like him to stop losing weight (he dropped another 6 pounds this cycle) and I would like him to take the weight I have gained. If only I could donate to him.

Over the last several days we've talked about how much we would like to know if the chemo is working. We thought it would be about the first of June before a scan was done, but Dr. Ansari wants to know as much as we do evidently, so next Tuesday Johnny is having a CT scan. I am nervous and excited at the same time. I just pray that it shows some improvement, any improvement at all.

We were really happy today with his lab results. His liver enzymes came down a good deal, and his CBC levels went back up to the normal range. Last cycle I thought for sure we were looking at an impending transfusion. He has steered away from that for now. Whew.

Really, the only "bad" thing that happened today was that they tried to give him Phenergan for nausea before starting the chemo agent and it ended up making the neuropathy in his feet go crazy . . . think restless leg syndrome gone wild. He absolutely could not stop moving his feet and legs. It was pitiful to watch. Finally, after a couple injections of Ativan, he settled down and was able to fall asleep. Deep sleep. It was hard to wake him up for the filling of the pump. He basically dozed through that whole procedure.

So, now he is back home and in his own bed. He just asked for the remaining left-over Pete's Patio pizza and a Gatorade. That makes me happy.

Oh, and before I go, I want EVERYONE to mark their calendars for July 9-10. That is the date for the American Cancer Society's Relay for Life here in Niles, and we want everyone to be on Team Toad. This is the first time we have had a team in the event and we want to show them how we roll. Coincidentally, July 9th is Johnny's birthday, so you know we will have a birthday bash for him there. Also, it marks one year since his diagnosis. We would like everyone to celebrate along with us in his victory over colon cancer and his impending victory over liver cancer! We need team members to collect donations, walk the track, and hang out with us at Toad Central! More details soon . . . just mark your calendars and lace up your walking shoes!

Out of Bed

2010-04-13T22:25:00.000-04:00

Finally!

I couldn't stand it any longer. Yesterday I hooked Johnny up via his port to a liter of fluids. He was terribly dehydrated and I gave him the ultimatum: I hook him up or we go to the hospital and they hook him up. I won.

It was definitely a Catch-22. His body needed the fluids so badly, but it ended up causing a raging case of firerhea. He was up most of the night, while we tried to catch that runaway train with Immodium. We caught up at about 6 in the morning. At some point in the night, my headache that started at work geared up into a full-fledged migraine. Great.

I slept in for a while after Johnny was finally settled and my head eventually felt better. Geez, you'd think there was a little bit of stress in my life or something. . .

Late in the day, Johnny started feeling a bit better and tried eating and drinking a little something. We will call it partial success. He did feel good enough to sit in the car in the outfield to watch Quinn's scrimmage baseball game. It was nice to see our baseball friends. . . and to be outdoors.

So, at least my Toad finally got out of bed and out of the house for a little while today. Just that little bit exhausted him and he has settled back in for the night.

I'm settled in, too. Right next to him. My favorite place to be.

Long Week, Sunny Weekend

2010-04-10T20:44:00.000-04:00

It has been a very long week at our house. Johnny has been sick every single day since last Sunday. By sick, I mean some level of nausea/vomiting/diarrhea. He hasn't been out of bed since Tuesday, but things are looking up.

When he woke up this morning, I could tell he was feeling better and he even said he was. Although his body is just tired from the exhaustion of being sick for a week, he looks much better. He managed to eat and drink a little bit today without any yucks.

Since the sun is supposed to be out tomorrow, we are hoping to get outside for a bit and enjoy it. Of course, the Master's is on, so our time outdoors will be determined by tee off.

Thanks for the continued notes and cards and messages via Facebook. We love that even on the bad days we NEVER feel alone in all of this.

Keep praying that the HAI pump is doing its bizness and kickin' cancer booty, or liver as the case may be.

Taking the good with the bad

2010-04-06T19:18:00.000-04:00

Long day at the infusion center yesterday, with a lot accomplished.

Johnny is having a really hard time anticipating Chemo Monday’s. It has gotten to the point that by Sunday night, his head has taken over and he is vomiting at the mere thought of chemo the next day. By the time we arrive at the infusion center and have his port accessed, he is a sick mess. We have talked a lot about this and he said he thought his body was just really getting tired of chemo. I told him I thought his body was probably just fine, that it is his mind/head/heart that is tired of chemo.

Our discussion with the doctor initially centered around Johnny’s liver labs. They are not good. As a matter of fact, they are getting worse. We had talked about this before our appointment and had decided that we didn’t care what the labs were at this point, we wanted to start using the HAI pump. We told this to Dr. Ansari, and he agreed. We know Johnny has liver cancer; we know it is aggressive; we know that we need to get in there and do whatever we can to address this mess. We told Dr. House in Indy that we wanted to be as aggressive as possible in response to the cancer. Since the liver enzymes have failed to go down, we thought it was time to fill the pump anyway and see what happens. We didn’t really feel like there was any reason not to, and certainly no other real options at this point.

We also talked about Johnny’s issues with chemo anticipation. It has become a pretty serious issue. So much so that Sunday night I slipped Johnny some of my anti-anxiety medicine just so he could get some sleep. I asked him in the morning if he was able to sleep, and after he said yes, I confessed. I know how well it works for me, so I was very happy that it provided some relief for him, too. Johnny has started on yet another medicine to help with the mental issues that go along with this chemo/cancer crap. I am actually taking the same thing, so I know it will help him. Better living through chemistry, right?

Then our discussion turned to nausea control. It has been a difficult thing to manage, and so random. We have yet to determine a pattern to his good days/bad days. This was a good lesson for us, because it seems that if you ask enough questions, there is always a pretty good solution. There is a cream called HABR that the Mar-Main Pharmacy in South Bend makes (also available at Merrill Rx in Mishawaka). It contains Haldol, Ativan, Benadryl, and Reglan. Yumm-o. Good stuff if you are severely nauseated. It is applied to the back of the knee, wrist, or elbow. They recommend the back of the knee so the patient can’t smell the stuff, even though it isn’t too bad. No sense in adding to the nausea. They also said that instead of using the Ativan prn (which means “as needed”) he should basically be using it around the clock. Ativan is an anxiolytic (anti-anxiety) with the added bonus of helping with nausea. Two for the price of one!

Once he was hooked up and receiving fluids (yes, I asked for a least a liter and a half) they gave him his regular anti-nausea med (Aloxi). Once they started infusing the CPT-11, the Aloxi wasn’t enough and they added IV Ativan. Good stuff. The vomiting stopped and he was asleep in about 60 seconds, no kidding. He slept through the remainder of the chemo (more or less) and woke for the official Filling of the Pump. There was really nothing new with that, because he has had it emptied and filled the last three times with heparinized saline solution. We were so happy when the FUDR was pushed in to the pump knowing that there is something infusing each and every one of those @#$%^ !@# tumors with toxic chemicals. Take that! I visualize that Musonex little green monster guy commercials when I think about it. If only it were that simple.

Last thing on the agenda before heading out the door was his monthly Sandostatin shot in the booty. He hates needles so much, and this one is a doozy. Plus, it is like pushing maple syrup into his butt, because the liquid is so thick. Poor thing, it really does hurt. I checked out the butt-smokin’ hot booty myself this morning, and it has a little bruise. I kissed it and made it all better. (Ask Quinn - - - I totally grossed him out!)

With all the added meds to our arsenal, last night wasn’t too bad. He had restless feet (from the neuropathy) but once they settled down, he had a decent night. Today (without jinxing it) has been decent, too. He was up for a good portion of the mid-morning, but has been asleep since about 2 p.m. and will probably stay in bed for the night. I keep loading him up on the meds, hoping that it will keep the vomiting away.

Johnny is a strong guy and will keep fighting this nastiness as long as he needs to. It is so hard to have the “what if” conversations, but we know that it would be really irresponsible to not talk about potential outcomes. We are both intelligent enough to know that it is better to plan for the worst and hope for the best. With that in mind, we have had some very serious conversations lately. Sometimes he initiates the conversations, sometimes it is me. More often than not, we both end up crying. Keeping in mind, always and no matter what: we will never give up. Even though it is so hard to talk about some of the issues we are facing, we can usually come up with solutions (even if they might only be temporary) if we talk them out. That is my point here: talk. The worst thing would be for each of us to carry our burdens in silent, not including the other. I worry about him as much as he worries about me. Talking makes it real, but it also makes it seem so much more tolerable when you have shared it with the one person you love more than life itself.

Neither of us can see the future or predict the outcome to all of this, but I can tell you one thing: I will love him forever.

Pumpin' #4

2010-04-05T21:31:00.001-04:00

Short post due to exhaustion . . . will fill in the gaps tomorrow.

Here is the nutshell of today:

Lots of nausea/vomiting
Lots of IV Ativan
Lots of IV fluids
Lots of hours spend at the infusion center (9 1/2 to be exact!)
Lots of excitement as the Hepatic Artery Infusion pump was FILLED!

Bottom line: Cancer, your time is up. We are sending in the big guns and you should probably pack up and leave. Consider your eviction notice served.

Long post tomorrow to full of all the information your looking for!

Happy Easter

2010-04-04T20:28:00.000-04:00

Hope everyone found all their Easter eggs while the sun was shining today! We had a beautiful day with lots of family and lots of friends.

Tomorrow is back to chemo. The anticipation is so difficult for Johnny. Just thinking about it makes him physically ill. That is tough to watch. We are going to talk to Dr. Ansari about that tomorrow. I hate that the anticipation ruins what could be a decent day otherwise.

Hopefully (and the main focus of our prayers tonight) is that the alkaline phosphatase will come down and we will finally be able to use the HAI pump. His level last week was 321. It has to be 180 or lower to fill the pump. If it isn't going to come down to the 180 mark, then at least we would like to see progression in the right direction.

One of our friends, Susan, wrote a poem for Johnny and I'd like to share it with all of you. And to you, Sue: Thank you so much! :)

There is a quiet man named Toad who has a heart made of pure gold,
and his character stands out in every way.
He does love to be outside; in a tree stand he might hide.
But, now his story must be told . . .
A loving husband and a friend to his Pam he's always been,
and to his sons and examples that is rare.
In this town they call their home, they'll not find themselves alone,
for we know that they are the perfect pair.
Now that challenge comes his way, Toad shows each passing day
that there is no mountain he can't climb.
As wee see him fight the fight through a hell that's dark as night
we know that he'll pass the test of time.

Same Ol', Same 'Ol

2010-03-29T22:55:00.000-04:00

Really, nothing new to report.

Johnny has good days/bad days. Good hours/bad hours. It is just up and down with no real pattern.

Sometimes he eats and all is well. Sometimes he eats and it all makes a return appearance. We haven't been able to figure out any certain foods that cause him to be sick.

For the most part when Johnny feels good, he gets out of bed and gets moving. He even took a field trip to Bowne today to say hi to all of his co-workers and friends (thanks, Larry!). When he feels puny, he stays in bed and waits for the yucks to pass.

Hopefully the next week will be a good. Looks like the weather might be good, so I'll get him out on the deck for some high dose sun therapy.

Totally off subject here, but if your team has not made it to the final four in the NCAA tourney, could you do me a favor and cheer for Duke? I know, weird request, but if they win the tournament I have a chance to win 2nd place in our pool at work. Yeah! I have already planned on what I will buy with the winnings: A 3-piece bistro set for the deck off our bedroom. See, isn't that totally worth cheering for Duke?

Enjoy the sunshine this week!

Super Day -- Well, mostly

2010-03-23T20:24:00.000-04:00

I have to say I was really nervous about last night with Johnny being so sick at the infusion center. But, after only about 8 hours, he quit vomiting! He didn't sleep very well, but never had to get up because he was getting sick. I really thought today would bring a bit more yuck, but NOPE!

Johnny ate really well today and so far (fingers crossed) has kept everything down. He even walked outside for a little bit and went to the grocery store with me. Are you ready for this? He even made dinner tonight!

Wait . . . I spoke too soon. Literally, as I was typing the previous paragraph, he walked into the bathroom and . . . well, you know.

He came out smiling, and said it was the PopTart he just ate, and that he feels fine. We are still discovering what he can and can't eat after his gallbladder removal. We aren't sure if it is the dairy or the high sugar content that bothers him, or if it is the chemo doing it. Who knows.

Anyway, he did have a really good day so lets just go with that.

And now, back to the show . . . #3

2010-03-22T20:54:00.002-04:00

Chemo again . . . Gah! Why does the time go so fast when you really want it to slow down and vice versa? Another of the great mysteries of the universe.

First, I have to tell you about the amazing weekend we had at the Korner Kottage Bed and Breakfast in Sutton’s Bay, Michigan. We were the guests of Jim and Linda Munro, owners and former Niles residents. Staying at the Korner Kottage was like going to your favorite relatives’ house and relaxing for the whole weekend. The kind of relative that means it when they say they want you to come visit and relax. The kind of relative that will have breakfast ready for you when you wake up, and a gourmet breakfast at that -- with the most awesome coffee machine on the planet. The kind of relative that is there for you if you need anything at all (like winery suggestions) but will let you do your own thing and sleep all day if that is what you choose to do. The kind of relative that has the best dog in the world (shout out to Nestle Quik!) that is sweet and friendly, but not over-the-top. The kind of relative that has all the really cool little details in every single room, and heaven-scented bed linens. (We stayed in the Paris Room.) Yeah, it was just like that. Comfortable, warm, inviting, relaxing, amazing. And to top all that off, Sutton’s Bay is the sweetest little village. There are some great shops along the Main Street and a couple great restaurants, too. I can’t even tell you how many wineries there are in that area, but I know I counted at least 20 in the Leelanau Peninsula. We walked through town a couple times and ate at Gusto’s, an Italian restaurant within walking distance of the Kottage. (Think Pete’s Patio away from home) We also discovered a deli that had the absolute most spectacular smoked whitefish spread ever. Ever. Really.

If you have never had the pleasure of staying at a B&B, as we had not, put it on your MUST DO list. I think this may have just started a new hobby for us. It was so much more comfortable than any hotel we have ever stayed in and was so much more relaxing and enjoyable. The difference is in all the little details that a hotel just can’t provide. Really, if you are looking for a wonderful weekender for any occasion at all, call Linda and Jim. Seriously, call them. I’ll wait right here for you to get back to the blog.

Linda, we really missed seeing you, but Jim did an amazing job! We will definitely be back -- and sooner rather than later, I hope!

After our weekend away, it was really hard to think about starting up chemo again. Johnny had gained so much strength over the last week, that I didn’t want to see it drained away by the chemo, but we knew it had to be done and how important it really is.

His liver enzymes didn’t come down, but they didn’t go up, either. I think we have crested the summit and the labs will hopefully come down next time. They were 209, 298, 320 and today 321. I think we will start to see them come down, maybe not to where they need to be yet by next time but trending that direction. They have to be below 180 for them to fill the pump.

He did receive the systemic (port) chemo today and that was pretty rough. He was sick before we even left for home. He has been up and down since coming home, varying from sound asleep, vomiting, or singing old Alamo songs about Davy Crockett. I know, weird.

We had wonderful visits today at the infusion center. They have renamed the bed area that Johnny has been in the last three times as the Toad Lounge. My friend, Farid Jalinous (Dr. J), stopped in for a while, then Jeff Brawley and Tammy stopped in. Then a great surprise, Johnny’s chemo buddy from his first protocol, Carol, stopped in. She had her infusion with us in the Toad Lounge. It was so nice to see her and catch up with her; the last time we saw her was December 21st. I told Johnny just this morning that I had to email her because it had been a while, and I was thinking about her -- and there she was! Wonderful! Even my sister, Carla (HAPPY BIRTHDAY, BOOMER!), stopped in before we left. She works in that building for a pediatrician group.

So the day, although yucky for Johnny, went by very quickly. Ginger did manage to accomplish a good amount of crocheting, and I got some Kindling done. We asked for additional fluids again today, especially with him being sick so quickly. They were happy to give it to him. All of the nurses there are fabulous.

He is now in the tub and will go straight to bed when he is out. We have all of our “supplies” ready for the nighttime. Hopefully, his tummy will calm down and he will have it out of his system before going to sleep, rather than while he is trying to sleep. I hope, I hope, I hope.

Praying for a good night’s sleep, and liver enzymes that come down to an appropriate level. And for so much more.

HEY! I just check on some of the comments from previous posts: Dr. Yancey is that YOU that commented? Oh, my gosh. . . how are you? Are you eating properly? Is anyone providing you with late evening snacks? Are you taking care of all your minions? We were so happy to see that you were checking on Johnny. Incision is gorgeous! And yes, there were 53 staples, to be exact. Looks perfect! Hope you are being appreciated appropriately by all the people you are helping. . . we certainly appreciated everything you did for us. Take good care!

Temporary Interruption

2010-03-19T13:05:00.000-04:00

We now interrupt cancer for an entire weekend!

The Fighting Toad and the Mrs. will be together and ALONE for the entire weekend. Please don't come looking for us, we are hiding.

I'm so excited!

Maybe a little better?

2010-03-16T20:44:00.000-04:00

OK, before you all start hollering about how long it has been since I last posted, I just want you to know that I am trying to protect you all from the redundancy of day-to-day life here at Chemo Central.

When I say that each day consists of nausea, vomiting, diarrhea &/or constipation, sleeping, and a freezing Toad, I am not kidding. Just scramble up the order in which these events occur and you could have any given day, any given hour.

I will say that yesterday and today both have shown improvements. Johnny has been much more wakeful than he has been in quite a while. His color is a bit better -- still on the pale side, but pinking up.

Right now, I am wondering about his blood counts (especially the Hemoglobin and Hematocrit -- components of the Red Blood Cells). He has been super cold over the past few days and just can't warm up. When I got home from work yesterday, I was getting dinner on the table and seriously thought I was having a "Waking Hours Hot Flash". That would have been a new one to me. Most of my "flashes" have been of the nocturnal variety. Johnny was laying on the couch all snuggled up in sweats, a hoodie, and a fuzzy blanket.

"I am roasting to death!" I tell Johnny. "Did you turn up the heat, or something?"

"I might have," he admits from under the blanket.

Yeah, maybe. I looked at the thermostat and it was almost 80 degrees in the house. I am not kidding! And here I thought my peri-menopausal crap had kicked into overdrive.  What relief. And, I turned the thermostat back down to 68 degrees.

Progress is slow, but sure. I hate that it is already Tuesday of Week 2 and Week 1 looms dark on the next horizon.

The good news is we are getting away for the weekend -- ALONE! Our 22nd anniversary is on the 26th and we have been gifted a weekend at the Korner Kottage Bed and Breakfast in Sutton's Bay, Michigan.  We decided that this weekend would be the best since we are as far away from chemo as we can get. How lucky are we?!?! I have never been to a B&B before, and I am completely stoked to have Johnny all to myself for the whole weekend. Thanks so very much to Linda and Jim Munro for this incredibly special gift. It couldn't come at a more important time for us.

On a completely different note, please go to HERE and vote for the cute little redhead (#2565). He is my nephew, Griffin -- Carla's little guy. (This is a Cute Baby Contest that a radio station is putting on.) Please vote once a day until March 29th! I want him to win sooooo bad!!!   Thanks, I knew I could count on all my blog friends! By the way, Carla is NOT happy with the picture that they posted. They took the pictures at a Family Show at Century Center. I guess they took several pictures and posted the ONE that he isn't smiling in. No matter, he is still cute as a freakin' bug . . . so, VOTE!

Thanks for checking in on us. It really does mean a lot.

Not Quite Perfected

2010-03-11T19:21:00.000-05:00

What should I say about Round Two? -- (keep it clean, this is a family show) --

My hope was that we had learned enough from Round One that we could conquer Round Two (R2) straight out of the starting gates. Evidently, we didn't get everything right.

From the last post you know that R2 caused us to spend 8 1/2 hours at the infusion center. Even though we couldn't fill the HAI pump, I still felt pretty confident that the extra hydration they gave Johnny was going to go a long way to improving things this week. I also thought that the Sandostatin shot was going to be the blessing that Emend was with Protocol One (P1); it did start off that way, actually.

Tuesday and Wednesday were pretty similar to last round. Nausea and vomiting started off late Tuesday night and continued through Wednesday night. The Sandostatin shot kept the firerhea at bay, but also caused some slight constipation. Obviously we needed to give him a little something for the constipation, so I went really slowly with the Colace.

Fast forward to Thursday evening: The vomiting has stopped (for the most part) but the firerhea has started. We just can't seem to find a happy medium with the diarrhea/constipation. Talk about frustrating.

I will most likely take Johnny in tomorrow for IV hydration. He is starting to look a little green around the gills, and I don't want to put it off until Monday. Waiting til Monday last time was a really bad idea.

So, if I could just ask for a few more prayers, I would really appreciate anything you could send up on Johnny's behalf. This has been so much harder than we expected.

Long Day in the Land of Chemo #2

2010-03-09T21:50:00.001-05:00

I think Dr. Ansari jinxed us with the first protocol of chemo. He told Johnny he was "thriving" on it, but I'd now like him to eat those words.

Let me give you the run-down of yesterday in the infusion center. It was a very, very, very long day.

Johnny's appointment was at 8:45. We arrived and like every other time, he had his port accessed, labs drawn, and our visit with Dr. Ansari.

Dr. Ansari was happy to see Johnny feeling significantly better than the last time we were in there. Johnny's weight was steady, so no more weight loss was good. After discussing the seriousness of the diarrhea and vomiting from the first round, Dr. Ansari said that he would add a once a month injection called Sandostatin to combat the severe diarrhea. Hopefully this will be as effective as the Emend was from the first protocol.

Then off to the infusion room. Johnny was still feeling a little run-down and not himself, so he chose to lay in a room with a bed again. I actually like it back there, so I didn't mind at all. The only thing that bothers me is that he isn't being social in one of the only venues available to him during the week. Maybe next week he will feel like being out among the people.

Before they started the anti-nausea med (Aloxi) I asked the nurse if they could hang extra fluids. Normally when they run a piggyback med, they hang it with a 500 mL bag of fluids. I asked if we could go with a full liter, possibly more. I told them I was anticipating the dehydration that we went through before, and it made sense to me to get as much in to him as we could before it started coming out. The nurse thought it was a great idea, so they ended up giving him a total of 1.5 liters with the Aloxi, Decadron, and CPT-11.

We waited and waited for the liver function lab results. When they finally came back, boo hiss. His alkaline phosphatase was still too elevated. As a matter of fact, it has gone up. The SGOT/SGPT has basically remained the same, but within the range allowable for the HAI pump chemo to get started. We have no idea why the alk phos is going up, but it makes me mad. Really, really mad.

To be perfectly honest, it also made me scared and while Johnny lay in the bed receiving the remainder of the fluids, I started to cry. Fear and frustration are a terrible combination for me. Always means tears.

Johnny is always the voice of reason. He reminded me that the original plan was 6-8 weeks after the pump placement was when they would start the HAI chemo. So, technically we are only at 4 weeks post-op. I know, I get that. I just wanted it to start without any more issues. Maybe we shouldn't have even looked at the labs yet. . . I don't know.

I plan on calling Dr. House to find out if there is something we should be doing/not doing to get the alk phos down.

After the infusions were finished, we went through the emptying and re-filling of the HAI pump. Johnny was still nervous with the procedure, but it was done and over in a couple minutes. I can tell that it will continue to get easier and easier each time we go. Several people were in attendace for yesterday's performance, because they want to get as many people trained as possible. They, too, are anticipating seeing an increase in the number of HAI pumps with Dr. House being in such close proximity to South Bend.

Finally, with everything else complete (I still haven't figured out why it took allllllll daaaaaayyy looooonngg.) Johnny got the shot in his butt for the Sandostatin. We were out the door just after 5 p.m.

So, all of that was yesterday. Last night Johnny had a little vomiting but not too bad. He didn't sleep well, but didn't need to get out of bed much. All day today he has been quiet and has had the on-again/off-again tummy ache. No firerhea as of yet. Vomiting has started back up late this evening, so I am starting to get a little nervous for the remainder of the night. Praying hard that everything eases up and he will be able to get some sleep. . . .sigh . . .

Please pray for a decent night for Johnny and that he doesn't get dehydrated. Also pray that the liver enzymes cooperate with us and will be within an acceptable range for the next round. We have decided to not even check next Monday; we will just wait the two weeks until his next scheduled systemic infusion.

Thanks to Amberg's for a wonderful dinner last night!

What We've Learned

2010-03-04T20:14:00.000-05:00

Ok, that's it. I am never going to admit that Johnny had a good day again. Just when you think it is safe to go back in the water. . .

Last night was a doozy. Seems there is this little thing called "rebound constipation". Yeah.

Johnny's tummy started to feel tight again last night before bed, and he was just really uncomfortable. We talked about the last time he had had any action "down there" . . . and I don't mean in the Biblical sense. Potty action, you know? It was on Wicked Wednesday, an entire week ago.

In the meantime he had been significantly sick and dehydrated, but still thought that was a pretty long time to go without a poo. I gave him some of the Magic Elixir at about 11 p.m. and waited to see if anything would happen. He took a soak in the tub to try and relax, thinking that would help. He took his p.m. meds in the hope that it would help him get to sleep, and hopefully in the morning something would be "moving".

My poor Toad tossed and turned in the bed for the entire night. He was doing figure-8s like a championship ice skater. That would go on for about 30 minutes and he would get up and try to go again. Back to bed, figure-8s, back to the bathroom. Seriously, for the entire night. While he was trying to find a comfortable position, I would lay still as a board so that in case he got into a good spot, I wouldn't ruin it for him by changing my position. When he would fall asleep for a few minutes at a time, he would moan -- it was pitiful and my heart broke for him. I gave him some good old Sennokot around 2 and another batch of Magic Elixir at 3:30-ish. At almost 5 this morning he has some minimal "success" and we both felt that he had probably turned the corner.

It was really scary from about 2 to 5, though. I figured it was probably a bowel obstruction caused by surgical adhesions that had already started to form. Probably wrapped tightly around the catheter connecting the HAI pump to the liver, too. At one point I said, "Do I need to take you to the hospital?" He didn't think we had gotten to that point yet, but I was completely serious. He promised he would let me if he thought things weren't going to work out from the potty end -- so to speak. Again, this is where a little knowledge can go a long way towards driving you insane, especially when it is the middle of the night.

Happily, things started to "move", and how. I took the boys to school and when I came back, Johnny was comfortably sleeping in bed, exhausted. I joined him and we both ended up sleeping until almost noon! Obviously, he has been tired today, but overall much, much better than last night.

And just think, in 4 days we get to start this cycle all over again! I promise you, I have learned sooooo much in the last two weeks, and it is my solemn oath that I will do a better job with his next cycle. Here the plans according to what we have experienced with Round One:

Hydrate, hydrate, hydrate all weekend long prior to chemo. He won't argue the point with me this time, I'll bet.
Start anti-nausea, anti-emetics before arriving at chemo. (Emend the wonder drug is contra-indicated with this chemo protocol, dang it.)
Start CPT-11 Imodium protocol at first sign of "tight" feeling in his belly.
If he has significant vomiting &/or firerhea this time, I won't even hesitate to take him in for hydration first thing in the morning. I'm not playing the "wait and see" game this time!
As soon as vomiting/firerhea stops, wait a day and start Sennokot to avoid "rebound constipation".
Push fluids. Fluids are our friend.
Pray even harder.

The worst thing about this has been not knowing what to expect. Now that we have an idea, we both feel much better able to get a handle on things sooner rather than later. That is comforting.

What really makes Johnny feel good is the visits and phone calls. He is such a social butterfly that being basically trapped in these four walls is very difficult for him. Please continue to pop over for a chat or to ring him up on the phone. If he has to cut the visit short because he isn't feeling well, then that is what he will do, but please don't NOT come over because you don't think you should. He loves the company. (Thanks for the visits today, Jeff and Dave!)

We will just relax and hang out over the weekend, anticipating Round Two. I think the next round is ours.

Sunny Day

2010-03-03T18:46:00.000-05:00

When the sun shines, everything just feels so much better, don't you agree?

After receiving fluids, steroids, etc., on Monday, Johnny has had a couple of pretty good days. Yesterday he ventured to Wal-Mart with me again (DON'T EVEN GET ME STARTED!) but that was pretty much it for activity. Napped most of the day, otherwise.

Today he slept late but then got up for several hours, and even made his famous "Jake Steaks" for dinner. The sparkle was back in his eyes a bit and he was even quite the tease today, which tells me he is feeling much better. He is now sleeping on the couch, and in an hour or so will get up, grab something to drink and head to bed. Nights are pretty early around here, which is actually quite nice. I like a quiet house in the evening.

My greatest hope is that his liver is recovering and will be in good order for Monday (which gets here so fast!) and we will finally be able to put the HAI pump to work.

Since we are laying low today, not much to report. Just wanted to let you all know that he is doing so much better and we appreciate the prayers.

Much love to all.

Body Fluids

2010-03-01T20:21:00.000-05:00

It’s all about fluids. Bodily fluids.

If your body thinks you have too much, then it rids itself of all perceived overages through a variety of orifices.

When your body has made a terrible mistake and has rid itself of way too many fluids, it needs help in having them replenished.

We have run the full gamut.

Today was Johnny’s appointment to have his liver enzymes checked to see if it was time to have his bright, shiny new pump finally put to use. (It wasn’t: liver enzymes still elevated. Drats.) We weren’t actually schedule with an appointment with Dr. Ansari, but when his nurse saw Johnny walk in, she told Dr. Ansari that Johnny looked pretty bad and after the labs were drawn he sent for us.

Remember how he teased Johnny about “thriving” on chemo with the first protocol? He was openly concerned about Johnny and how awful he looked after the first round of CPT-11. When Dr. Ansari came in the exam room, Johnny was laying on the exam table. He has NEVER laid on the exam table. Keep in mind, he has only started one of his two protocols at this point. Makes me a little scared for when they do fill the pump. He said that regardless of what the liver enzymes showed, Johnny was too sick today to start the FUDR protocol through the pump. We were hoping to get both protocols on the same schedule, so it wasn’t all bad. If the enzymes come down by next Monday they will do both chemotherapies.

He rattled off a list of stuff for the nurse to do for Johnny, including hydration with at least two liters of normal saline, Decadron, and IV anti-emetics. Johnny was so pitiful, that he had to be put in one of the private rooms today. Usually he sits out in the main infusion room in the big leather recliners looking out on the city and chatting with all of his newly acquired friends. Today, he curled up on a bed covered in a couple blankets and looked downright dreadful. I sat on the couch in the room and really had a hard time not crying. He looked like a chemo patient.

They infused the first liter of fluids with the anti-emetics. The second liter was infused with the Decadron (steroid). At the end of the second liter, the nurse asked if he had gotten up yet to use the restroom. He hadn’t. He hadn’t even stirred. I woke him up and asked if he thought he could go to the bathroom. Slowly and deliberately he got up. He was like a drunken sailor trying to walk to the bathroom (about 10 feet away). I had to help steady him the whole time he was up. I helped him back to bed and the nurse came to see how he had done. Success, but still “concentrated” (for you medical folks out there).

She was afraid of giving him too much, but agreed that another ½ liter was probably in order. So, she hung yet another bag of fluids.

We were there from 9 a.m. until after 3 p.m. today. It was a long day, to say the least. Especially if you consider that he didn’t even get chemo! Finally, I asked Johnny if he thought he could make it to the car. He said that other than being a bit groggy and dizzy from laying down, he was feeling better. His stomach ache was gone, which was a huge relief.

Once we got home, the Decadron started to kick in and gave him a boost in his energy. He actually sat up on the couch for quite a little while and sat at the bar and ate dinner with us (albeit an abbreviated version of dinner).

He has been relatively conversational this evening, although I see him petering out as it passes 8:00.

We were really spoiled with the first go-round of chemo, to be sure. I think this is a more accurate representation of what chemo must really be like. I can tell you one thing for sure. . . I don’t like it.

Please pray for my Johnny to keep his fluids in tonight, and for his liver enzymes to start cooperating with us.

Let's Talk About Sleep

2010-02-27T20:14:00.000-05:00

Isn't it funny. . .

Since Evil Wednesday, Johnny has had approximately 240 minutes of wakefulness each day. That's right, do the math, about 4 hours. A day.

I check on him regularly to make sure he is ok, and then he just falls right back to sleep. I wake him for the next round of medicines and to drink as much as he possibly can while awake, and then he falls right back to sleep. I wake him to see if he wants a change of scenery and help him to the couch in the living room, and then he falls right back to sleep. I wake him because I am kissing the top of his gloriously bald head (which by the way, does NOT smell like a baby anymore, drats!), and then he falls right back to sleep.

While he sleeps, I'm totally mastering my Farmville skills (Level 41, Baby!) and putzing around the house. I've spend so much time on Facebook, they should be sending me a thank-you note pretty soon. Jake and I have worked on the Man Cave a bit each day. I've helped Quinn with the unfinished homework assignments that have him grounded until he can legally buy booze. I've actually organized the scary storage part of the basement, and I've acquired Kindle-Thumb.

SIDE NOTE: Seriously, you will see in the not-to-distant future that Kindle-Thumb will be an actual diagnosis with an ICD-9/CPT code and everything (that's medical jargon). If you sit and read an electronic reader for say, more than 2 hours at a stretch, the muscular part of the palm of your hand that provides function to your thumb becomes stiff and a little crampy. True story. I have to set down my Kindle at timed intervals now and do some thumb calisthenics just so I don't suffer a strain or a more serious bout of Kindle-Thumb. Oh, my gosh. I've just realized that I am so completely out of shape, that even my thumbs have given up on me. Sad. Very sad, indeed.

But, I digress . . .

Back to the Sleeping Toad.

I told him today that I so totally miss him. He is here, but he isn't. We haven't had a good conversation since Tuesday. We both feel the void. He has no clue what day it is because the days are flying by while he sleeps them away. I watch the seconds on the clock tick slowly away while I watch him sleep. That is hard on both of us.

Ironic that he is awake for 240 minutes, and that tends to be my nightly total of sleep. (Don't worry, I am more than willing to nap with him during the day, and I DO! -- ask my kids!) And, YES, I have some things from my doctor that help in that department, so I am fine. (I just know I am going to hear about admitting to 4 hours of sleep a night!)

If sleeping is what gets him through this nastiness, then sleep away my Toad Prince.

Sweet dreams to all of you, too.

To Linda M. -- Thank you, thank you, thank you. You made me smile and look forward to something special today.

So Maybe He's Not a Wimp

2010-02-25T21:14:00.001-05:00

Oh, sure. Now I just feel terrible for calling him a wimp.

Yesterday was probably the worst day Johnny Brawley has ever had. Ever.

When he woke up, he wasn’t feeling well, but just couldn’t figure out what was going to happen. Constipation vs. Firerhea. He had stomach pain up high and said his stomach felt “tight”.

Other than giving him anti-nausea meds, I didn’t know what else to do. I couldn’t give him Colace if he was going to end up with diarrhea. I couldn’t give him Imodium if he was going to end up constipated. Since this was our first time with this chemo, we just kinda had to wait and see.

That was probably a mistake.

When the diarrhea and vomiting started, it was like chasing down a runaway train. He couldn’t keep anything in, and even if he tried, medicine wasn’t going to stay in if we actually got it in. Things spiraled downhill pretty quickly.

Again, without being graphic, there were times that the potty was occupied, and he still needed the bucket. I was there to empty the bucket in the other bathroom, as quickly as possible, because he needed it almost non-stop for a while. He was so weak he could barely keep his head held up, and most of the time rested his head in a towel that he held in both hands. I tried to keep him cooled off with a cold washcloth, but I think that was more for me than him.

I finally called the MHO office (after hours) and the nurse on-call gave me a call right back. She told me to wait until he had gone 10 minutes or so without vomiting and to double up on some of his anti-nausea meds. I also started the CPT-11 Imodium protocol which basically means I have to give Imodium every two hours continuously until he has had no diarrhea for 12 hours. Let me just say, that is a lot of Imodium.

Sometime after midnight, he managed to get the anti-nausea/anti-emetic meds down and they stayed down. I think that was our turning point.

At one point I can remember thinking to myself that I was so happy he had put on 20 pounds while on the other chemo protocol, because that was already melting away before my eyes. His legs, arms, and booty look so thin already. I just prayed and prayed that it wouldn’t continue like this for the next chemo rounds. I could sense that Johnny was feeling beaten down from being so sick so soon. It was on his face, and in my heart.

As his wife, there are so many times that I feel so completely helpless. I can’t take it away, I can’t make it better, I can’t stop it from happening. I just have to concentrate on doing what I can do: keeping his cup filled, giving his meds on time, warming up his feet before bed, and telling him I love him.

No matter what I do to try to make him comfy, he always says, “Thank you.” Most of the time, that makes me cry. I usually say something like, “You don’t have to thank me.” And he always say, “Yes, I do.”

Man, I love him.

So, during the night last night, I woke him every couple hours for his Imodium pills. When he would take them, I would tell him to drink as much as he possibly could. I think he actually managed about 12 ounces through the night. I was really happy with that.

When he woke this morning (for more pills) he said he felt a lot better already. He basically stayed in bed until about 1:30, when I told him he really needed a shower. No, really. Bad. I envisioned those prison movies when they hose down the new detainees. That’s the kind of shower he needed.

We settled for one at our house. I put a step stool in the shower for him to sit on and he actually managed very nicely. He said that made a huge difference in how he felt. After he rested for a little bit, I gave him a delightful pedicure (DON’T GET ME STARTED ON NASTY FEET!) and then made him some soup for lunch. Ok, well, my dad made the soup, but I warmed it up to the exact right temperature. He ate a little and had a bit more to drink. I was satisfied and told him if he kept drinking throughout the day, I wouldn’t nag.

Basically, that was all he ate today, but he’s had almost 40 ounces of fluids. Probably not even close to re-hydrated, but we are still walking a fine line here.

He is already in bed for the night (8:30), but I will force fluids on him when I wake him for the Imodium and other meds he still has to take.

I’m hoping (and praying) that tomorrow will have a more normal rhythm to it, for his sake.

Staple Removal

2010-02-23T20:50:00.002-05:00

Ok, seriously. He's a wimp.

I really hate to say it, but lets just call it what it is, people. Fine, he's gone through a lot in the past 8 months, but PUH-LEASE!

I knew yesterday was going to be tough and that it wouldn't be easy to convince him that the time was right for the staples to come out (past due, if you really want my honest opinion). So, late in the afternoon after a stressful day at the infusion center (see yesterday's post) I gave him the warning that the staples were absolutely coming out tonight. I wouldn't bug him about when; I left that up to him. Whenever he was ready, he was to hop in a hot shower and scrub the incision area with some scrub brushes provided by the hospital. There were several small scab areas (yuck, I know I said 'scab') that needed to get cleaned off, and two large areas of scabbing that were hiding the staples underneath.

Finally, at about 10 p.m. he decided to take a shower. He wasn't rushing into it at all. He took a nice long shower and did a great job of scrubbing his staple zipper clean.

Then the excuses started. "Not yet, I'm cold."

"Let me just lay down for a couple minutes."

"I need something to drink."

"After the next set of ice dancers is done."

I am absolutely not kidding. Each and every one of those excuses came out of his mouth. Honest to blog.

When he was finally ready to let me start, I cleaned off the area with some sterile soap and was ready to start yanking - - - I mean, carefully removing the staples. Then he tells me, "Only do five, and then I need a break." Really? This is going to take all night. So I am poised and ready to take out the very first one and he says, "Hold on, I think I might have to throw up." ARE. YOU. KIDDING. ME.

Now let me stop right here and tell you: I was trying sooooooo hard to be patient, really I was. But it was going on 11 p.m. and I was getting tired and wanted to crawl in bed myself. It made me remember when the boys were little and they tried all the delay tactics so that they wouldn't have to go to bed. Not to mention that the only thing on the Olympics was the ice dancing finals, which was torture enough for one evening. Fine. I did it his way.

After over an hour of preparation, I finally took out the first staple. It came out like a hot knife slips through butter. Johnny was all tensed up, with the tail of his shirt in his mouth and grimmacing like you wouldn't believe. One down.

I took out another 4 staples and just like he asked, we took a break. I had to sit through an entire ice dancing performance before he was ready to go again. "Just do up to my belly button and then stop for another break." Uh-huh.

Five more staples out. Then I announce that the next few are going to be "doozies" because they are around the belly button and they have gone deep and are crusted over with scab. I know, yummy, right? "Wait, wait. I need a drink."

I needed a drink at this point, too, but it certainly wasn't 7-Up that I wanted.

We had to wait through two ice dancing couples before I could move on. "Ok, you can go now."

Now I have to admit, the belly button staples were tough to get out. It couldn't have been comfortable with me digging around, but they came out and Johnny didn't even cry.

But, you guessed it. Another break. At this point we have about 15 staples removed and about 40 to go. I told him that the next ones were a "piece of cake" and that I was going to go fast. I actually got another eight or nine out before I had to stop. Short break this time, and then I started in again. I went as fast as I could without drawing attention to the actual number of staples that were coming out. I really felt like he was focusing too much on the number of staples, rather than the ease with which they were being removed.

Finally when we were on the home stretch, I lied to him. I said, "Only 10 more to go, honey." He never looked down or even opened his eyes, so I knew I could get away with it. There were actually only 5 more. I counted down while he chewed on his shirt tail: 10, 9, 8, 7, 6, 5 . . . and when I said "DONE!" He was all surprised and confused. He said, "I thought you said ten!" "I lied."

Honestly, I worked up a sweat in the 75 minutes it took to take 50-something staples out.

Finally, I gave it a good once over with an anti-bacterial/anti-microbial scrub and then covered it lightly with some gauze, just so the little bit of ooze from the staples being removed wouldn't get on his jammies. Then I got him another drink, gave him his pills for the night and tucked him in bed.

"Call my mom and tell her they are out."

"Seriously, Johnny, it is midnight. She won't be up."

"Yes, she will. I told her I would call. She'll be up."

So I called Ginger and told her what a good boy he was and that she raised such a bwave widdle man.

The end.

Not Completely According to Plan #1

2010-02-22T20:37:00.006-05:00

Here we go again with another "Good News, Bad News" scenario.

Good News: Johnny did receive chemo today.

Bad News: Not through his newly acquired Hepatic Artery Infusion Pump.

If we put a positive twist on this, it really isn't all bad. When we got to the infusion center today, they drew labs first thing, as always. Good news: they accessed his port with no trouble whatsoever and they were able to draw labs from the port, so no extra pokes were necessary.

While we waited for the lab values, they hung some fluids to hydrate Johnny. Always a good thing.

Then the labs came back and they showed that the liver enzymes were elevated. This meant that we couldn't add the chemo agent to the pump today. It would be a little too much for the healing liver to handle. The elevation probably came from the fact that Dr. House had to root around in there when he took out one of the tumors for biopsy. Also, in reading about the pump placement and chemo procedures, it says that chemo should begin 6-8 weeks after pump placement to allow for proper healing. Obviously, due to the fact that Johnny's tumors are aggressive we wanted to get chemo going as soon as possible. He is only 2 weeks post-op, so it stands to reason that the enzymes would still be elevated. We will try again next Monday.

While we were there, he did receive the systemic infusion through his port. The initial infusion went in quite slow (to watch for reactions) and we were there for about 3 hours. I feel better knowing that at least we have something in there attacking the cancer.

Johnny was very nervous about the whole process today. I felt really bad for him. Keep in mind, the MHO office hasn't cared for a HAI pump patient for over 5 years. This was the first pump placed at IU Hospital. EVER. So there was a little apprehension that the staff would be able to handle filling the reservoir. I should add here that even though he couldn't have the pump filled with chemo agent, they still had to "flush" the reservoir so that it doesn't clot off.

It really didn't help that of the two nurses accessing the pump, one has done it before (albeit 5 years ago) and the other was learning. I had the most recent experience with it by watching Dr. House do the nuclear medicine test while we were in Indy.

They had everything set up and Johnny's belly prepped and draped and the "learning" nurse was holding the "How to Access the Codman Hepatic Artery Infusion Pump" instruction sheet. Seriously. The other nurse was scrubbed in and explaining things as she went along. She did have to reference the instruction sheet to figure out if there were any differences in the two needles supplied in the access kit. I had to explain the difference between the "bolus" needle and the "access" needle. Good thing I paid attention in Indy.

To Johnny, this was completely overwhelming and he felt like quite the guinea pig. At one point he said that he almost told them to hand me the needle and let me do it! Wow, that is huge for him. He usually doesn't like me to participate in the procedures that are being performed on him, much to my dismay.

From my perspective, which I later explained to Johnny, this in no way meant they weren't prepared for him. In the cath lab there are procedures that are performed so infrequently that it is easy to lose expertise with that one procedure. There are many times that we have to ask someone else to come in for extra help, or to reference packages and such. Once we get going, it is like the old "riding the bike" thing. You remember and move on.

In the end, the two girls accessed his pump with no problems whatsoever. As a matter of fact, they did it quicker than Dr. House did in Indianapolis. (Although Dr. House did draw a bullseye for them, so there wasn't really any fishing around.) they drained the remaining saline from the fill in Indy and then refilled it again with more flush. The procedure, although stressful, was not painful for Johnny at all.

Tonight Johnny is feeling the initial nausea from the new systemic chemo (agent called CPT-11). We have loaded him with the anti-emetics and anti-nausea meds and are hoping that the firerhea (my newly created word for fire and diarrhea) is kept at bay. We have supplies at the ready for that, too.

We are going to take out the staples tonight, too. That will have to be a blog entry all on its own, I have a feeling. :)

We now come to the point in tonight's blog entry that I start the prayer request thing. Please pray for his liver enzymes to come down so that we can use the pump next time. Also, for the nausea/vomiting/firerhea to be kept to a minimum and that he will be able to get up and around quickly.

You might send up a prayer that the staples come out easily tonight, too. We had a test run last night (he let me take out the lowest 7 staples that were right at his underwear line) and he acted like I was killing him. Then afterwards was all, "Oh, that wasn't really painful it just made me nervous." Such drama. Only 49 more to go!

Begin Again

2010-02-21T18:13:00.005-05:00

Not much to report from here. Just wanted to let everyone know that Johnny is getting around a little quicker with each passing day. He is feeling pretty good overall, and his energy level is definitely getting better.

Tomorrow at 9 a.m. he starts his chemo again. We have stocked up on all the recommended supplies and I feel we are as ready as we can be. I've worked this weekend on convincing him (nagging) to drink lots of fluid in anticipation of the expected side effect of diarrhea. Dehydration can come quickly and we really want to avoid that at all cost.

Staples are supposed to come out tomorrow. I'll probably take care of that after chemo. That is too much to put on him first thing in the morning.

If you happen to look at the clock at 9 a.m., just give a little shout out to the Good Man Upstairs. He'll be expecting your call.

Ready for chemo -- again

2010-02-18T22:13:00.003-05:00

Today was our first visit with Dr. Ansari since surgery. It is always so nice to see him, even if it was basically so he could check out Johnny’s belly zipper.

He reviewed the notes that Dr. House had sent him and everything was great. He had the results from the biopsies of everything they took out. The nodule that remained in the colon was completely free of cancer, just remnant tissue. Wheeeewww! The gallbladder did have stones, but nothing out of the ordinary. The lymph nodes around the liver (which was a little nagging worry in the back of my brain) were completely clear as well.

So, the liver remains the nasty culprit in this mess. Dr. Ansari told Johnny, “You are very strange. My chemo worked so well in your colon, but your liver didn’t like it.” We reviewed the chemotherapy agent for the HAI pump, which is called FUDR. It is in the same family of agents as the 5-FU that he came home with on the pump during his first round of chemo. FUDR has shown a 60-70% response rate in the liver when infused through the HAI pump. Keep in mind, this response rate is for all comers. Not just healthy 43-year-old butt-smokin’ hot, scar sportin’ hotties. It includes everyone. We are not so crazy as to think that Johnny’s odds are exponentially increased, but we do think his age and overall good health gives him the best possible hope for the best possible outcome.

He will also receive a systemic agent through his existing port (Dr. Ansari feels this is the icing on the cake) called CPT-11. I haven’t yet done as much research on this agent, but believe you me I will! The little I do know about it is that the major side effect is “significant and dehydrating diarrhea”. That just sounds like something to look forward to. We will leave it up to Johnny to decide which is worse to deal with, the gut-busting constipation from the first go-round, or the booty-burning diarrhea he has to look forward to with this new stuff. His little tushy just can’t get a break!

Chemo is scheduled to begin again on Monday, Feb 22nd. He will get the infusion pump reservoir filled and have a 2 hour infusion through his port. The schedule is the same as last time, every other Monday. Unfortunately, we have no idea how long chemo will take. Johnny will receive intermittent scans to see what the reaction of the liver has been. As long as the tumors continue to shrink, the chemo continues. If the tumors go away completely, then the pump stays in for a while to make sure nothing comes back and eventually will then be removed. If the tumors shrink but stop at a certain point and don't shrink any further, we head back to Indy for resection of the remaining tumors and discuss future options. We are praying for and believe that complete resolution of the tumors and "peppercorns" is a possibility and we look forward to the day that we get the "all clear".

We also found out that Johnny will not be able to sit in a hot tub, bath tub, or fly in an airplane while he is receiving chemo through the pump. Any dramatic changes in body temperature or pressure will dump the entire reservoir of chemo into his liver -- and we really don't want to piss the liver off any more than it already is. This might not be such hard news for the majority of people to handle, but I have to tell you - Johnny is the bath-taking-est person I have ever met. He takes AT LEAST one bath a day, sometimes two! He loves a good soak in the tub. We had a hot tub for 13 years, but it petered out 2 years ago and we hadn't yet replaced it. We had actually considered buying one this spring because we loved it so much. Now, it just seems cruel. I told Johnny that I will buy him the hot tub of his dreams when he is all better.

We spoke at length with two of the infusion nurses. They both have prior experience with filling the pumps, which helped increase my confidence level. I asked them if they had the pump rep coming, and they had already made the arrangements. I also said that I want the supplies ordered and over-nighted and Johnny’s name clearly labeled on them so they don’t get accidentally used for random procedures. I know I sound bossy, but they really didn’t seem too bothered by my list of demands. I actually watched Dr. House do the Nuclear Medicine procedure in Indy, and for all my medical friends out there you know what I mean when I say, “See one, do one, teach one.” I’m not afraid to push them out of the way and say, “Hand me that needle!” Johnny would probably never let me come to another appointment of any kind if I actually did that!

I should just be happy that I get to remove his staples. It is a little unnerving (to him) that I am so excited to take them out.

After the office visit, Johnny wanted to get his daily exercise by roaming around Bowne (where he works). It was so nice for him to see all of his friends. Johnny is such a social person (duh!), that it has been tough on him to not connect with his friends and co-workers on a daily basis. It made me so happy to see everyone’s response to him stopping by. I could tell that they were genuinely happy to see how well he is getting around and every single person he encountered hugged him. I can tell others appreciate the great guy that I get to call my own. It was nice. When we got back in the car after our visit, Johnny thanked me for taking him there. I could tell that it was important to him.

This evening we had several friends stop by for meal deliveries, chats, and puppy booty calls. Dave, Soleil is still crying and sniffing at the door looking for Oscar. Serious chemistry, don’t you think?

Dave Balog, thanks so much for the chicken soup. We swear by it at our house. Johnny had a little bowl before bed to settle his tummy. Just what the doctor ordered!

Thanks to Amy Gourlay, and Connie Davis for the food deliveries! Again, it is so comforting to have a decent meal without the stress that goes in to not only making the food, but the scary trips to Wal-Mart to buy the stuff!

We continue to be surrounded and upheld by our friends, family and community. We thank you all so much.

Wal-Mart After Dark

2010-02-17T17:11:00.004-05:00

There are three places on the planet no God-fearin’ person should visit after 8 p.m.: Duval Street in Key West, Bourbon Street in New Orleans, and Wal-Mart in Niles.

We knew after surgery that it would be super important to get Johnny up and moving as soon as possible. While he was at IU, he walked laps around the unit and did fantastic considering the zipper he has up the front of his torso. After coming home on Saturday, I told him he had the weekend to feel better and sleep, but once Monday came we were heading back to the YMCA.

We set our goal for the first time at the Y to once around the track (it is a 1/10th mile indoor track). I figured it would loosen him up a bit and get things moving again. We agreed we would stop whenever he was ready. In true Johnny fashion, he managed to walk four full laps before his calves started to burn. After the first lap, he complained that he was having burning and pain in his arms. I looked at him and laughed (‘cuz I’m super compassionate like that). He had his shoulders and arms all hunched up and wasn’t moving them at all while he walked. I said, “Dude, relax and move your arms. Shake them out a little.” He was just so concerned about moving his legs around that track that his arms completely forgot they could move independently. Once he shook them out, they were fine. When we were at the 3 ½ lap mark, an elderly gentleman (OK, seriously he was like 90!) lapped us. Again, I laughed and Johnny’s comment was, “He’s sprinting.” We saw a bunch of friends at the Y, which was nice. Thanks for the encouragement, everyone!

Tuesday I spent most of the day trying to deal with the insurance company, and fortunately I think everything has worked itself out, but it took the entire day. Because of that, we didn’t make our trip to the YMCA. I had a few things that I needed at good old Wal-Mart, and Johnny decided that would be his exercise for the day. It was about 8:00 pm, and believe me when I say I know where the pictures from the “People Of Wal-Mart” emails originate. OMG. It seems that the tooth-to-tattoo ratio in our Wal-Mart is approximately 1:15. And for some reason, the higher the T/T ratio the more important they think their conversations are, and the louder they speak. Why people drag their tired children to Wal-Mart at bedtime and expect them to behave and then SCREAM at them to “shut yo’ mouth” is just amazing to me. I could go on and on, but I think you get the picture. We made it back to the car safely, and Johnny mentioned that we might want to stick with the Y from now on.

Today, Johnny’s cousin -- also Johnny, aka Johnny Robert -- stopped by with his son, Dillon, for a visit. Dillon is a hoot and sat on my lap and played the “Opposite” game and the “Name Parts of Your Body” game. Then he told me he liked my boobs. It seems like the attention is usually on Johnny when we get visitors (as it should) so I was super psyched that Dillon paid attention to me, even if it was my frontal region. Come back any time, Dillon!

Overall, Johnny is still tired most of the time, although I see his energy level getting better each day. His incision area still looks fantastic and I can’t wait to get my hands on those staples!

We see Dr. Ansari tomorrow at 9:45, just for an update on how things went with the surgery and HAI pump placement. Hopefully, we have our ducks in a row for starting chemo at some point next week. I recommended that they ask the pump rep to stop in for a little refresher course on filling the reservoir, and wouldn’t you know -- they took me up on my suggestion. I’m hoping that he will be there for the first filling, but as long as they get an in-service, I’m good with that. I talked to one of the infusion nurses that was there when the last pump patient was seen about 10 years ago, and the patient is still with us. Talk about relief! That was the best news I’ve had in 7 months!

Thanks to everyone providing meals again to our family. Barb Garrard, Linda Arnold, Amy Rudlaff, Joann Hathcoat, Michelle Nichols, Pam Reed, and Tori Davies you guys are great! It is nice to know that my family is being fed great meals, even when I am too overwhelmed with everything else to concentrate on making a meal. Truly a blessing.

Please continue to pray. Our prayers are now turning towards success of the chemotherapy. We know that the chemo has a lot of work to do, but firmly believe that it can handle the task, especially when backed up by the prayers of our friends and family.

There's No Place Like Home

2010-02-14T20:18:00.003-05:00

Didn’t Dorothy from Kansas say it best: There’s no place like home.

Even after Dr. House told us not to even ask to go home before 7 days, Wonder Toad showed them that it could be done.

Most of our Niles friends know that a 15-year-old Freshman named Alex Wentz committed suicide. He was lovingly known as Big Mac to all of his Howard Township Baseball family. Big Mac was a great kid and unfortunately had issues that he couldn’t resolve and didn‘t have someone in his life that identified his troubled head/heart. Friday night we had a cry together over Big Mac and the unfairness of it all. Johnny’s emotions were very, very frail on Saturday morning.

On Saturday morning our favorite surgical resident, Dr. Kyle Yancey, stopped in to check on Johnny and said things were looking very good. Johnny told him a bit about the reason for his fragile emotional state and Dr. Yancey said he would talk to Dr. House about letting us go home either Saturday or Sunday. I really thought they would keep him until Sunday, but when Dr. House came in a little while later he gave us our walking papers.

I want to take a minute to talk about the quality of care we received at IU Hospital. It was impressive. From the registration process all the way through discharge we really never had any hold-ups and were surrounded by the greatest people. I mentioned earlier about the nurse that rounded through the surgical suites all day to give the waiting families updates on their loved ones. That was awesome and made the wait much more bearable.

The nursing staff on Johnny’s unit was AMAZING! OK, we had the one chatty nurse (Chatty Kat), but even she was nice. . . she just couldn’t keep her mouth shut or the light off! At least she was nice. We had a total of 6 other nurses during our stay: Stephanie, Colleen, Laura, Jennifer, Melissa, and Brooke.

They were all professional, personable, caring, and intelligent. I never even felt the need to question what was happening. And we all know that I have NO PROBLEM questioning something if it isn’t right. When Johnny finally got to his room Monday night, I was reviewing his drips and noticed that there wasn’t an antibiotic hanging. Ginger and I decided that as soon as the nurse came back in we would jump her - - - I mean, ask her about it. Wouldn’t you know that the next time she entered the room (about 2 minutes later) she was carrying the antibiotic with her. Good thing, too. We were ready for her.

We never, ever, ever had to wait for the call light. Seriously. NEVER.

The only time I had to put on my Pit Bull collar was on Friday night. It was 10 p.m. and Brooke came in to tell us that we had to move to another unit because they needed his bed for someone coming out of ICU. If you can just imagine, I was not at all interested in moving my sleeping Toad to another unit at 11 p.m. As I said earlier, Friday was emotional for Johnny anyway and I was not going to take “NO” for an answer.

Brooke was trying her best to tell me that it wasn’t possible to stay in the room, and I was trying my best to let her know that we had squatter’s rights. So, I did the only thing I felt I could do . . . I asked for the charge nurse. Bruce the charge nurse came in to let me know the reason why Johnny had to move. I told Bruce the reasons why Johnny wasn’t going to move.

Here was the scenario: There was an open room on a med/surg floor for a male patient. There was a male patient coming out of ICU that needed a room because ICU needed to put someone else in that bed. Johnny no longer needed to be monitored, so they wanted him on the med/surg floor, the ICU guy was coming to Johnny’s room and the newbie was going to ICU. I told Bruce that I saw another option: Move ICU guy to med/surg and leave my Johnny out of it. Bruce gave me a quizzical look and then called the charge nurse on med/surg. By golly, wouldn’t you know -- It Worked! I know what most of you are thinking, and you can even ask Johnny: I was really nice about the whole thing and never even had to raise my voice. I was more than willing to, but never actually had to. I thanked Bruce profusely and told him that was my idea of great customer service. I will be writing a letter to the Director of that unit to praise all of the people we encountered. It was a great experience overall.

The residents and med student that rounded on Johnny were the greatest bunch! Dr. Yancey led the team and showed great compassion and great leadership. He is a genuinely caring young man and will be the greatest surgeon when he is finished. I would love to know where he ends up; and I think he will be doing great work in the future. I wish I could remember the other names. I know the third year med student’s name started with a B, and he is from Cameroon, but I’ve drawn a blank and for that I am truly sorry. There were several times that he stopped by on his own because of his class schedule, and he would have to catch up on rounds without the rest of the team. He will also be a great physician and is a kind-hearted and gentle man. He told us that Dr. Yancey is his role model and we agreed that he was worthy of that title. Ginger and I would pack goody bags for them when they rounded at night and you would have thought we were providing them with a steak dinner! More than once they told us it had been their dinner for that night. These guys really work long, hard hours. It gives me a newfound respect for people who decide to become a physician.

We were so impressed with Dr. House as well. We didn’t know it going in (and it wouldn’t have mattered anyway) but Johnny was the first patient that Dr. House put the HAI pump in since he’s been at IU. He placed multitudes at Sloan-Kettering, but Johnny is his poster boy for IU. On Thursday when the Nuclear Medicine team didn’t want to try the infusion study out of fear of messing it up, Dr. House himself came down on Friday morning and did the study. Thankfully, it went BEAUTIFULLY and showed that the liver perfusion is exactly as it should be from the pump. That means the chemo will go to the liver and nowhere else.

We appreciated every visit from Dr. House. He stopped in at least once a day, and sometimes twice. He was always willing to listen to our fears and concerns and addressed them so that when he left we always felt confident again.

When they sprung us on Saturday morning, we were a little surprised. Ginger and I had everything packed and ready to go in short order and waited for Johnny to give us the thumbs-up. He wanted to make sure his tummy was settled enough before we hit the road. Our nurse, Jennifer, made sure we had everything we needed to make the trip, including some really nice pain meds. Thanks, Jennifer! He made the trip without any problems whatsoever. Slept most of the way, actually.

So that brings us back to Niles where Johnny and I have spent the last day trying to catch up on sleep and getting everything put back in order. We are getting there, slowly but surely.

And in case anyone was wondering about how Ginger and I would do for a week in a hospital room with Johnny: I wouldn’t and couldn’t have done it without her. She is an amazing woman whose mission in life is to make things better for the people around her. I love her very much and am so lucky to have a mother-in-law that I can say I very genuinely LOVE! Thanks a million times, Ginger! I love you.

Coming Home!

2010-02-13T10:20:00.002-05:00

Just a quick post to let you know:

We are coming home!

Hopefully we will be out of here by about noon. We are soooo happy!

Friday gets an A+

2010-02-12T21:45:00.005-05:00

Will you please forgive me if this is a short post tonight? The olympics opening ceremony is on, and I have to check out all the foreign dudes. It is a hobby of mine.

The Brief Version of the past 24 hours:

Johnny had a good nurse and a good night last night.

Went down early for the nuclear scan that was a HUMONGOUS success. Dr. House was pleased.

Had a lovely visit from Jeff and Berniece from Ohio. We love them so much and their visit was just what Johnny needed.

Foley catheter came out, and he was able to potty without any problems afterwards.

Did 4 laps around the unit at Mach 4.

Received a most excellent bathing experience from the Mrs.

Needed a two hour nap after the most excellent bathing experience. (I'm that good.)

Ate mashed potatoes and chicken noodle soup for dinner. Almost 6 whole bites of more-or-less solid food!

And last but not least -- DRUM ROLL, PLEASE! -- he went poo-poo in the big boy potty!

Every single goal accomplished today!

We will get an update tomorrow on when we should start thinking about heading home. I hope it is soon. I need to hug my boys. Funny how you miss them when your gone.

Thanks for the continued prayers. They are definitely working! Johnny's stength is increasing by the minute!

Night Nurses Take Note

2010-02-11T21:18:00.001-05:00

Night nurses should not be chatty. And they should have night-vision goggles.

Our nurse last night was very kind, but lacked confidence and had to check and double-check everything time and time again. She had the light on in Johnny’s room MOST of the night and every time something needed to be done, she would start and then go find someone to confirm that she was doing it right. All the while talking, talking, talking.

Needless to say, there was no sleeping through the night last night.

The anesthesiologist arrived first this morning (6:15) and took the epidural out. Not so bad, at first. Then our favorite Chief Surgical Resident, Dr. Yancey, arrived and checked Johnny’s incision and belly. Things all looked really good there. Dr. House came in a little later (7:45) and reminded us that Johnny would be having the nuclear scan to check the pump. He told us how pleased he was with Johnny’s progress and that things were going very well.

After Dr. House left the room, everything seemed to go backwards.

With the epidural out, Johnny’s pain level went through the roof and the PCA pump just wasn’t covering it. His electrolytes were a bit out of whack and when they started infusing the Potassium, it burned the be-jeebies out of his arm. We had to stop the infusion because he literally could not take the pain.

The trip to nuclear medicine was a failure, as well. The technologist wasn’t familiar with accessing the HAI pump and was very forthcoming and honest saying that she needed to call Dr. House because her 10 minute in-service didn’t give her enough confidence to tackle the initial access. I totally respect someone that knows their own limitations and isn’t willing to let their ego get in the way of someone else’s safety. So, we are rescheduled tomorrow at 7:30 when Dr. House can be present.

Once back in the room from that ordeal, Johnny was stressed out and not feeling well at all. He was pale and in pain and I hated every second of it. I couldn’t do anything to make him all better. Ginger and I sat in his dark room for the majority of the day, keeping things quiet so he could just sleep as much as possible.

Finally, at about 2 p.m. he started to come around a little. Toradol was added to his pain regimen and that made a big difference. He finally felt good enough to take a little walk around the unit and did great, walking the whole way on his own strength.

After his walk, he got washed up and sat in his chair for a little while. Instead of heading right back to bed, he chose to take another lap around the unit. I was so proud! Of course, then he was totally spent and got right back in bed.

The evening was so much better than the morning -- thank the Good Lord.

At 7 pm our favorite nurse, Laura, came in to say good-bye and to tell us that she wouldn’t be back until Saturday. We love Laura. She is just the right combination of all the skills and personality that make the perfect nurse. We most likely will be on another unit by Saturday, so that made us sad. We had talked to her earlier in the evening about our trouble during the night before, and before she left she told us that she had taken care of that.

Our new nurse came in just after 7 to introduce herself. This is what I said to her, “Nice to meet you, Melissa. Let me be perfectly honest with you. Last night was terrible. Our nurse talked the whole night and had the lights on more than they were off. Johnny got absolutely no sleep and we just can’t have that tonight. I want to be upfront with you and tell you this because I need it to be very quiet tonight and the lights need to stay off.”

She said, “Thank goodness because I’m not a talker and I do my best work in the dark.”

I like Melissa.

Tonight I headed back to the hotel a little earlier (no real sleep since Tuesday) and have snuggled in to bed. I’m watching Survivor (I hope my kids are, too -- it is our show) and will probably fall asleep in about 10 minutes.

Tomorrow starts early with a second attempt at checking the HAI pump.

By the way, during evening rounds we found out that Johnny is Dr. House’s VERY FIRST pump implant here in Indianapolis. He did hundreds at Memorial Sloan-Kettering, but Johnny is his poster boy! No wonder the nuclear med tech was so freaked out. I am arranging to have the pump rep present in South Bend for his first filling of chemo. I am not taking any chances that someone at MHO hasn’t filled a pump before. I know Dr. Ansari said he could handle it, but that doesn’t necessarily mean the staff can. I’m not naïve enough to think that it will be Dr. Ansari filling the pump every time. I think I will just grab the bull by the horns on this one and make the arrangements myself.

OK, I have to go to sleep now. Thanks for your continued prayers, as always.

Chicks Dig Scars

2010-02-10T20:52:00.002-05:00

I can’t believe that it is already Wednesday. For just sitting around all day staring at Johnny, the time seems to be going by quickly.

Johnny’s big adventure for the day was walking an entire lap around the unit. At first he started out by holding on to me and Laura, the nurse, but by half way around he felt steady enough to let go and fly on his own. Since he still has the epidural in, that was no small feat.

Once he got back to the room, he decided to sit up in the chair for an hour and while he did that I gave him a little bath and loaded him up with lotion. I tried to make it “enjoyable” -- if you know what I mean -- but for some reason Johnny really wasn’t that in to it. Something about that complete abdominal incision that was a total mood killer.

By the way, I counted his staples today. FIFTY-SIX! That’s right, he has 56 staples holding his belly shut and the cute thing is, they curved the incision around his belly button! The incision itself is about 12 inches long and he has another incision on the left where the pump was placed that is about 4 inches. Seriously, chicks dig guys with scars. I told him I’m going to parade him around the beach this summer and I’ll be like, “That’s right, I’m with the dude with the totally hot belly scars!”

He has made a hobby out of his inspirometer (the breathy thingy that keeps you from getting pneumonia) and is a champion at that. He showed off for the respiratory therapist today and she only stayed 30 seconds because she said he had it down pat.

The steady parade of doctors has been very entertaining. Dr. Yancy and his associates (a couple of 2nd-year surgical residents and a 4th-year med student) have stopped in twice a day. I really like Dr. Yancey. He reiterated how well the surgery went and said that the colon was fantastic. Then of course he said, “But you know that your liver is a mess.” And we do. Again he said that if the chemo will work on the big lesions, then the little ones (“innumerable”) will just go away as well. We aren’t supposed to concentrate on the number because if it will work for one it will work for them all. I like his way of thinking.

They stayed and chatted for several minutes tonight and Ginger offered them all chocolate. I think they missed lunch and possibly dinner because they wolfed it down. I’m thinking about making them all peanut butter and jelly sandwiches for tomorrow because they might be working too many hours to actually get any meals in. They really do put in a crazy amount of hours.

The anesthesiologist (NOT Dr. Hotty-With-a-Body) stopped in to check on the epidural and PCA pump. They upped his PCA to every 10 minutes instead of every 15 minutes yesterday, but today he hasn’t needed it nearly as often. I think the epidural was the greatest idea on the planet!

I have to give MAD PROPS to the nursing staff here. We have had the most amazing care. Stephanie, Colleen, Laura, and Kat have been his only nurses so far and I’d like to haul them all home and put them to work at SJRMC. Wow. Do you know that we have not waited on a call light, or any request for more than a minute . . . if that. Each one of these girls has been great and very caring and professional. The charge nurse has stopped in on each shift as well to make sure things are going OK. Also, an administrator (Director of Nursing) stopped in to say hi and to make sure we were being accommodated appropriately. In addition to all of those people, they have a person come in to evaluate you for sleep disorders as one of their Performance Improvement Initiatives. I was totally impressed by that. She told us that so many with sleep apnea go undiagnosed because medical professionals don’t ask the correct questions. Johnny was a “low risk” for sleep apnea. Good to know.

I guess you could say that I have been very impressed with quality of care we have received.

Johnny is sleeping pretty comfortably right now, and will basically be out for the night, except for when they come in to give meds and take vitals. They have been great about lumping everything together to minimize waking him.

Tonight is my turn to stay with Johnny and Ginger’s to stay at the hotel. Neither one of us ever want to go back to the hotel, but we both realize that there is no reason for us to both exhaust ourselves. Splitting the duties just makes sense, although I always feel like the loser when it is my turn to go to the hotel.

We are hoping for another great day tomorrow. He has a nuclear medicine test at some point which will check the function of the pump (Important Test!). They are also planning on taking out the epidural and possibly his Foley catheter. He realllllly wants the Foley out! Tomorrow he will possibly start soft solids, if his belly cooperates. Then after that the big goals are a fart and a poop! If he can get that accomplished, then we could be home by Sunday. Not sure yet, but we should know more about when we are coming home by Friday.

Thanks again to everyone keeping my family fed and cared for at home (THANKS, AMY!!! J). And to my Class of ‘85 Facebook Friends -- you guys have made my time here actually enjoyable! It has been so fun to get the packages. Johnny got his package today and everything in it was so awesome. It came in a really cool blue and gold (school colors!!) gift box/wrapping. There was a great big yellow cup in the package that said, Healing is Progress and on the other side, Believe. I love that! Johnny is wearing the blue fuzzy socks right now. Thanks again, friends.

Hope everyone stayed warm with all the snow! Keep the prayers coming!

The Whole Story

2010-02-09T18:40:00.006-05:00

OK, I have had a nap, Johnny is settled in bed (probably for the night) and I finally feel like I have the time to fill you all in on the details of yesterday.

We arrived at the hospital at 5:30 and completed the registration process in less than 10 minutes. We were in pre-op by 5:45 and finished with all the preparations by 6:30, which included shaving what was left of the hair on his cute little belly.

The anesthesiologist came in to talk about the options available to Johnny. Let me just stop right here for a minute and say that: OMG! The anesthesiologist looked like he had just walked in from a photo shoot for the “Men of Anesthesia Calendar”. He looked to be about 25, and hotter than a 2-dollar pistol. Ladies between the ages of 19 and 25, his name is Ryan Miller. Holy Wah!

But I digress . . .

The options for anesthesia included an epidural for long-term pain management which sounded like a really great option. He said that for surgeries of this magnitude he likes to have the epidural in because it makes the first couple of days post-op so much more manageable. In addition to the epidural, he also has a Morphine PCA pump (the little button that he can push when he needs it).

Next, the senior surgical resident came in, Dr. Kyle Yancey. Nice guy. He is going to do well in medicine. One of the best bedside manners EVER! He asked Johnny what his understanding of the procedure was and then filled in any of the blanks that Johnny needed filled in. He was very thorough in his explanation without speaking down to us.

Dr. House then came in to complete the process and gave us the risks and benefits speech. We felt very confident again speaking with him and his confidence of the procedure and its outcome possibilities was comforting.

At 7:30 on the dot (No, I’m serious -- ON THE DOT!) the surgical tech came in and took Johnny back to surgery. I kissed him and managed not to cry (in front of him :o}) and then went to stake our claim on some real estate in the waiting room.

IU hospital has this really cool position . . . they have an RN whose job it is to round through each surgical suite and then come to the waiting room and report to each family. She does this every 60 - 90 minutes. It was wonderful, and made the time pass a bit more quickly, I think.

At 8:30 she came out and told us that they had made the initial incision and had started on the colon part of the surgery. At 10:00-ish, she reported that things were going smoothly, Johnny was stable and comfortable and they were working towards the gall bladder and lymph nodes. Sometime after 12 or 12:30 she reported that they had started work on the liver, removing some of the tumors for biopsy and evaluation. By 2:00 the report was that they had placed the Hepatic Artery Infusion (HAI) pump and would begin closing in 30 minutes or so. The 3:30 report was that they were closing and should be done shortly. At 4 they took us to the consultation room and Dr. House came in to give us the break down of the operation.

Here is the break down by part:

Colon: The removal of the section went great. He said that the tattooing made his job easy and the lesion easy to identify. He could feel a small nodule left in the mucosa of the bowel (approximately the size of an M&M) and it was probably the remnant of the primary tumor. Removed a few lymph nodes for study, but said that they looked “clean” and doesn’t expect to have any negative feedback from that. The end-to-end connection went together nicely and he doesn’t expect there to be any trouble from that. He will not be able to eat until Thursday at the earliest, but did drink quite a bit of water today. He enjoyed that a lot.

Gall bladder: Came out without a hitch. Nothing exciting to say about that.

Lymph nodes around the liver: Removed just to make sure nothing is traveling to other exciting destinations.

Liver: Ok, well here is where things take a little turn off “Every Thing is Perfect” Road. The tumors have continued to grow even since his CT scan here in January. There are about 10 tumors that range in size from 1 inch to golfball-size. In addition to these 10, there are “innumerable” lesions the size of peppercorns littered throughout the entire liver. According to Dr. House, this does not change our plan. In his words, “This is the right treatment at the right time.” He is still confident and still stands by his 60-70% response rate with this treatment. He would like to start chemo within 3 weeks of us getting home to start combating these obviously aggressive tumors. The news was overwhelming, but I have to say not altogether unexpected. I just had a feeling that these lesions were pissed off and were going to try to do a lot more damage in the little time they had left before we got to them.

The plan remains the same. The hope is that the infusion pump and the new chemo along with the systemic chemo will work its magic and knock out the lesions in the liver. Keeping in mind, they consider Johnny a “responder”. Since the chemo worked so well on the colon, we have every reason to believe that the correct chemo for the liver and through the pump will work equally as well. It just has to.

Ginger happened to ask Dr. House if he could even guess as to how long the cancer had been growing. He said that his best guess, with the obvious aggressiveness of the liver lesions and the size of the colon mass, was approximately one year before his initial diagnosis (July).

Johnny was in recovery for almost 4 hours, not because he was having trouble, but just like most hospitals, they were waiting on a room for him and then they had to wait on a nurse to arrive to take care of him. The girls in recovery were apologetic, but when I told them I knew the deal and that I understood, they let me spend another 5 minutes or so with Johnny. See, it pays to be nice!

Incidentally, his primary nurse in recovery, Liz, reminded me soooo much of my little friend, Jenny McKimmey! HI, SPUNK!! She was tiny and spunky and had glasses and moved and talked just like Jen. Silly as it may seem, it was comforting!

At about 8:30 or so last night they got him into his room (Room 5842) and once he was settled, I forced Ginger to go back to the hotel to get a good night’s sleep. I stayed with Johnny and took little naps through the night when he did. They provided us with a relatively comfortable pull out bed and I pulled it right up beside Johnny. I put the side rail of his bed down and we could hold hands all night long. He had trouble getting comfortable, and each time he wanted to change position required removing all of the sheets and blankets, monitoring the multitude of wires, tubes and catheters and finally getting settled. That usually lasted about 20 minutes and we would repeat the process all over again. Around 4 a.m. he slept for almost an hour and a half straight, and then the resident’s and other staff started in for the day.

He was able to sit up in a chair twice today, the first time was for 60 minutes and the second time was 90 minutes. Colleen, his nurse, was super impressed with him for even trying 90 minutes the second time.

So, here we are at 9 p.m. on Tuesday and he is gearing up for the second night. Tonight Ginger will send me back to the hotel to sleep and she will serve as night watchman for our Johnny. In the morning we will perform the changing of the guard and we will start the process all over again. It is nice to have Ginger here to share this with. There is no one else that would be able to do this with me (and for Johnny) on the entire earth!

Lots of you want to come visit, but I’m not sure when that will be feasible. Before planning your visit, please call. I would love to have you all stop by, but not at the expense of Johnny’s recovery. And I know each one of you understand.

Now for a couple shout outs:

To Mom and Dad: Thanks for being here for Johnny’s surgery. It was so comforting to have you here. I also want you to know that I appreciate all you do to make things easier on the boys. I love you so much.

To my sisters (and brothers-in-law): Thanks for making this easy on me by being my boys' other mothers. I know I can count on all of you to make this tough time easier on the boys. I couldn't do this without you, and I mean that from the very bottom of my heart. Love you Angie, Alan, Carla, Rob, and of course, Griffin!

To Aunt Barb: Thanks so much for the snacks, fruit, and beverages that you sent down with us. It so totally got us through the day yesterday and today as well. Lots of good stuff! Also, thanks for the meal for the boys and Carla, Robert and Griffin yesterday. They loved it, and Johnny and I appreciate it more than you could possibly know. Love from all of us!

Sonya: Love, love, love the puppy chow and everything else you sent down. The book has lots of lovely inspiration that I have found incredibly comforting. “Don’t fear tomorrow, God is already there.” I love you.

Linda (my other mother): Thanks for providing dinner for 1557 Harrah Road tonight. I know I can always count on you to be there for my family, for absolutely everything. I love you.

And to my FB Class of ‘85 Friends: You guys knocked my socks off! It was such a happy surprise to get a message from the front desk at the hotel saying I had a package. They brought it right up to me and the roses are absolutely gorgeous! I will be using the lovely bath products tonight when I go back to the hotel. Then, my kids call me screaming something about six pizzas from Chicago in dry ice. . . can we make bomb out of the dry ice, huh, Mom, huh?!?!?! They are so excited about the pizzas and are saving them for Friday night when they will watch the Winter Olympic Opening Ceremony. Sounds like they are planning a party and will be able to show off with their Authentic Chicago Pizza. I am just absolutely overwhelmed by you guys! Again I say, Facebook is AWESOME! Love to each one of you!

No Whammies

2010-02-08T17:46:00.003-05:00

The battery is about to run out on my laptop, so here is the nutshell version (I will give all the details after I retrieve my power cord from the hotel).

According to Dr. House:

He found NO SURPRISES. Which in our world is always a good thing.

The colon surgery went very smoothly.

The gall bladder removal went off without a hitch.

The Hepatic Artery Infusion (HAI) pump placement also went smoothly, and they tested to see if it was infusing properly -- and it was.

The liver has some tumors that are quite stubborn, but we will talk about them when I get the power cord.

My computer just told me it is going to shut off in 2 minutes due to lack of power, so I will post this now and get back to you all later.

Thanks for the prayers, we know there were tons of them today.

12 hours and counting . . .

2010-02-07T19:29:00.002-05:00

The alarm is set for 4:30, and we will be in registration by 5:30 tomorrow morning. I think we are ready. Well . . . ready for it to be over with!

We are in the hotel (University Place Hotel) directly across from the hospital. There is a walkway from the hotel directly in to the hospital which is open 24 hours. We like that. When we got here I told the gentleman at the front desk that we were here for "medical purposes" and would really appreciate being in a quiet room. We are on the 8th floor, and I don't think there is anyone else on this floor at all. Totally quiet!

The rooms and very spacious and have plenty of niceties. I feel bad that we are watching the Super Bowl and Johnny can't eat anything. Takes the fun out of the festivities altogether! We have a truckload of snacks in the room, too, which is kinda cruel. We were well supplied with snacks for our stay to be sure. Sonya, Barb, and Angie -- thanks for all the goodies! We will enjoy them when Johnny isn't here!

Mom and Dad, Ginger, and me and Johnny are all watching the game (OK, well, I am listening and perk up when the commercials come on) and will probably not get a whole lot of sleep tonight. We'll have the rest of the week to catch up.

I will update tomorrow as soon as we hear something after surgery. I do have a small request, if you will indulge me yet again. Will you please set your alarm (clock, cell phone, iPhone, pager, whatever) for 7:30 tomorrow morning. I would love it if we could all pray together and just inundate God with our prayers. I think he already knows how special Johnny is to all of us, but lets just give him a little reminder. I will be praying, and I hope you will join me, Ginger, and my mom and dad.

So, until tomorrow after surgery the only thing I can ask for is prayer and more prayer! That's all we need at this point.

We expect the surgery to take up to 4 hours, so I hope to post by noon or 1 o'clock. Believe me, I will do it as soon as I possibly can.

Love to everyone.

One Week and Counting!

2010-02-01T21:16:00.006-05:00

One week from today I will be writing to you from Johnny's luxurious accomodations at the Indiana University Hospital in Indianapolis.

By this time next week, Johnny should be settled in his room post-op and Ginger and I will be fighting over who gets to fluff his pillow next. It is my greatest prayer that I will be reporting all good stuff from the surgery, and I'll be praying like the dickens all week that it goes perfectly. I wouldn't mind if you all joined me in that prayer, as well.

Many of you have left messages asking what you can do to help. Well, first and foremost, please pray. That, if nothing else, if priceless. Secondly, if you look to the right column of the blog, you will notice that Lori Brawley has again offered to be our meal coordinator. This was an ENORMOUS help during the first weeks of Johnny's diagnosis and we figured that eventually we might need your help with this again. My biggest thing is to make the week we are gone as easy as possible on the kids and my sisters (who will be taking over primary Mom/Dad duties). Carla and Rob (and Griffin!) will be staying here so that the boys can sleep in their own beds and have their schedules remain as normal as possible. Meals for them is a main concern for me. Thanks to those of you who have already contacted Lori. It really means a lot to all of us!

Johnny is still dealing with some remnant side effects from the first chemo protocol. His hands are still numb (for which he takes Neurontin) and his blood pressure is still high-ish (140s over 90s). We are still working on getting rid of these side effects before he starts the next protocol. Looks like the main effect of the next round is diarrhea (I know, yuck) and stomach ulcers. We will start attacking the new side effects straight out of the gates with the next round.

So, I guess we just bide our time until next Monday. Our list of questions will have answers and our minds will (hopefully) be at ease for a little while. Broken record coming . . . please pray.

And The Winner Is . . .

2010-01-28T20:38:00.008-05:00

Johnny would like to thank everyone for their submissions in

The Fighting Toad Asstastic Booty Tattoo Contest!

There were 18 entries and we have the Winner!

~~~ DRUM ROLL, PLEASE ~~~

Third Place goes to Johnny -- Toad himself. (I know he shouldn't get an entry, but he was just so tickled with himself when he thought of it that I didn't have the heart to tell him he couldn't enter his own contest.) His submission was the Bio Hazard Symbol.

Second Place goes to Alan (my brother-in-law). His idea was a Gerbil.
Um, yeah.

and . . . Winner! Winner! Chicken Dinner! goes to

DAVE SCHIELE!

The winning submission is of a Toad on a Stool (toilet!). Get it? Toadstool!!! Love it, Dave!!

Dave is the lucky winner of a Fighting Toad t-shirt! Congratulations, Dave!

All silliness aside, you may be wondering how the actual tattooing procedure went today. It was a very simple procedure and Johnny handled it without any issues at all. He was gone from his room for only approximately 20 minutes. The rest of the time he just slept off the sedation and then took me out for a fantastic breakfast. When we got home, we both took a long nap and have basically just stayed indoors the rest of the day.

We are anxious to get to Indy and accomplish the next phase. We had a nice long talk today at breakfast about our hopes and fears and all the emotions that come along with cancer, chemo, and the procedures required to fix you when you are broken. I am so lucky that Johnny is a talker. If I wonder what he is thinking, I ask and he tells. Same in reverse. (It may surprise you to know that I consider myself a "talker", too!)

I'd like to let you all in on a little secret. I do believe that one of the keys to the happiness of our relationship is our ability to talk about EVERYTHING. You should try it -- if you haven't already. You just might like it.

On a very sad note:

Today the Lord brought Jason Arnold home to be with Him. Jason was an original. He was kind, funny, goofy, a good husband/father/friend, and saying he will be missed terribly is an understatement to the Nth degree. So many of you knew Jason and his family and know what a presence he had, no matter where he was.

Jason was helping out at his church on Saturday and fell off a ladder. He took the impact of the fall with his head and suffered severe brain swelling as a result. His injuries were not recoverable.

Please, please, please pray for Jason's wife, Karen, and their two children, Dylan and Alexis. I also ask that you pray for the rest of their family and the close friends that will mourn his loss for a long time to come. This includes my brother-in-law, Alan. He and Jason are life-long friends and this loss is overwhelming.

All Set

2010-01-26T20:31:00.005-05:00

It seems that all our ducks are in a row.

We have the colon tattoo scheduled for Thursday. Many, many suggestions have been entered in the Toad's Booty Tattoo Contest! Keep them coming . . . entries will be accepted until 7:30 am Thursday morning!

Our hotel reservations are made for the week in Indy. We will be staying at the University Place Hotel and Conference Center. It is directly across the street from the hospital and there is a covered walkway to and from the hotel. It wasn't our cheapest option, but it is the closest. I don't want to be more than a couple minutes away in case Johnny needs me for anything. The other (cheaper) option got terrible reviews (Thanks for your input, April!!!) and sounds scary and noisy. I figured that Ginger and I will eventually take shifts with Johnny, and I want both of us to feel comfortable coming and going no matter what time it is. When we have the opportunity to get good rest, the hotel needs to be close, safe, and comfortable.

Johnny's surgery is scheduled. I have have a very complete list of things I must take with us including a reclining lawn chair. (I've had a warning about the hard, straight-back chairs in the patient rooms -- thanks again, April!!!) I have a plethera of electronic devices to keep me entertained. I am such a HUGE fan of technology! My laptop, iPod, cell phone, Nintendo DS, and my brand new KINDLE should do the trick in passing the time. I am still taking suggestions on must haves for the hospital stay for all three of us (Johnny, Ginger, and me). Also, I really need some great reading suggestions to load onto my Kindle. So if you have read something awesome, please share!

My sisters and parents along with a great assortment of other family members and friends are helping us with the kids while we are gone. We have had many offers of helping during the time we are gone, and we greatly appreciate it. Some of you have asked if you can help with meals again. The answer is Yes, please. I would really appreciate the help for Carla and Robert and my mom and dad while they stay here with the boys in our absence. Just give us a call if you want to pick a day of the week to help out. We expect to be gone for a week. Thanks, friends. We have known since Day One that we could (and have!) count on you. Thanks for being part of our lives.

The last thing to do is pack and head to Indy. I just wish we were packing for a tropical vacation instead of a surgery for Johnny. I know that getting this taken care of means LOTS of tropical vacations in our future, so it will be worth it when we are all done. He is soooooo taking me on a tropical vacation when this is all done.

Stay tuned for the winning tattoo to be posted after Johnny's booty tattooing on Thursday. Remember the winner will receive a fantastic Fighting Toad t-shirt! Get your entries in! :O)

The Date is Set!

2010-01-21T20:26:00.002-05:00

Johnny's surgery is set for Monday, February 8th.

{{{ Collective Exhale }}}

We will arrive at the hospital at 5:30 am on that day and surgery is schedule for 7:30 am. I am relieved that it is the first surgery of the day. Being in the medical field, I know if you aren't first there is NO guarantee of what time your procedure will actually be performed. I also made sure that Dr. House IS NOT on call the night before. He should be well rested and fresh after the weekend and ready to perform his best work on my Johnny.

Dr. O'dea's office will be calling to schedule the sigmoid tattoo.

I have decided that until Johnny goes in for the tattoo, I am going to hold a contest!

What do you think should be tattooed inside Johnny's colon?

The winner will receive a Fighting Toad t-shirt!!! That's right, this isn't any fly-by-night operation. If I'm putting on a contest, I'm going to give out a prize!!

You can submit your entries by comments here on the blog, by message on Facebook, or by email (toad4mimi@aol.com). Enter as many times as you like!

Johnny will have final say on who wins, and of course, I will post it here on the blog.

Good luck!

Visit with Dr. Ansari

2010-01-20T18:27:00.002-05:00

At 2:00 today we had a little sit-down with Dr. A. I am still working 0ut the details of my "I heart Rafat" tattoo.

Basically, he reviewed the details of the plan presented to us by Dr. House yesterday over the phone. He filled in the blanks on the chemotherapy regimen. He also told us that in the past he dealt with these HAI pumps a lot. Unfortunately, when the pumps came out there wasn't really a chemo agent available that made the pumps worth the effort. He was happy to report that now there are a few promising drugs on the market specifically for metastatic liver disease from the colon.

Because of these new drugs, he anticipates seeing a resurgence in the use of the HAI pumps. I'm glad it is available, because I have read a lot about them and they seem like just what the doctor ordered (pun intended).

The only thing that was a surprise was the amount of chemotherapy. We thought it would be once a month, but actually it is every two weeks. He will receive a pump fill and systemic chemo at each visit. I tried to get a duration of chemo out of Dr. Ansari, and all he would say was, "We will do scans and they will tell us." OK, well, that's clear as mud. What I have read from my online research is that chemo is usually 4-12 months. Most people have it for 8-12 months. I'm hopeful that we will be on the shorter end of that timeframe, but lets not kid ourselves . . . there is a mess in his liver that needs to be cleared up. I don't care how long it takes, I just want it gone!

We are waiting for a call from Dr. House's office (AGAIN!) but really don't expect to hear anything until Friday. We would like to get the surgery scheduled as soon as possible. Obviously. We do have to wait until at least after February 1st because of the previous chemo. The Avastin has to be out of his system for 6 weeks, otherwise the colon will have a hard time healing after the operation. We are also waiting for an appointment to be schedule with Dr. O'dea for the tattoo.

WHAT? I haven't mentioned Johnny's latest tattoo? Oh this is my favorite part of this whole stinkin' ordeal. When we saw Dr. House in Indy, he told us that Johnny would require a tattoo so that he will be able to identify the lesion from the outside of the colon. Since the ulcer is so small, he won't be able to feel it from the outside during surgery and it needs to be marked somehow. The tattoo will bleed through the mucosa of the colon and he will be able to see the ink on the outside.

So Dr. O'dea will go in to Johnny's cute little booty and tattoo the INSIDE of his pooper. We are thinking about a heart with a ribbon through it that says, "MOM". That was my idea.

It really does feel good to have a plan in effect. I will be content when we have a date for the surgery. And as soon as we have that date, believe me, I will post it for all of you.

Johnny's blood pressure still isn't coming down . . . we have added an additional BP med to Johnny's regimen and hope to have that under control before he is bombarded with more chemo. Although, the Avastin was what caused the high BP, so with that no longer in the picture it just may be an issue of a little more time.

I do have another prayer request, if you all have the time:

Jake has been plagued with migraines for the past couple months. He was started on Inderal (a blood pressure medicine, commonly used for migraine treatment in children) two weeks ago. It still isn't working, and he is missing a significant amount of school because of these near-daily migraines. I feel so bad for him. I am a migraine sufferer myself, and I can't imagine having the number of them that he has had. I called his doctor today, and we are starting on another medication. Hopefully, this will start working for him.

To add insult to injury, his leopard gecko died today. Rest in Peace, Edmodius. We really loved that little bumpy gecko.

Quinn seems to be doing OK. Thank goodness for that.

* UPDATE *

2010-01-19T20:29:00.004-05:00

*** UPDATE: ***

Dr. House called tonight. Yee Haw!

He and Dr. Ansari finally made contact today -- sometime after Dr. Ansari's office called and scheduled our appointment for tomorrow.

They put their heads together and determined the best plan of action for Johnny. Here is what they came up with:

We are definitely going with the Hepatic Artery Infusion (HAI) Pump (Option 1). It will be placed during the surgery when Dr. House removes the ulcer left in the colon (and the gallbladder).
The best news of all is that the pump will be managed by Dr. Ansari, himself!!!!! He has had experience with this pump in the past and feels confident that he will be able to manage it right here in South Bend! Yea!! Although a trip to New York sounds exciting at first, I knew that it would become a chore.
Johnny will receive chemo through the HAI pump and his existing port. This means that he will be receiving another full protocol of systemic chemotherapy as well. This isn't something we were counting on, but if it is what will take care of every little bit of the cancer in his liver, then we are more than willing to do it. I feel so bad for Johnny just knowing how difficult the last few sessions were for him. I'm already praying for this chemo protocol to go easy on him.
At set intervals, Johnny will get re-scanned to determine the response of his liver to the chemo. We expect him to be on the HAI pump for 4-8 months; however, it could go as long as 12 months.
We are looking for complete response by his liver, you know -- no more tumors. If tumors remain after the HAI pump has done all it can, then we will consider resection of the remaining tumors at that time. The expected response rate of the HAI pump is 60-70% on its own. Dr. House said that he is confident that we will be able to "clean up" the entire liver. I think that is his way of saying "complete remission".

We were looking for a plan and now feel like we have one again. That is a good feeling. The few questions that we have will be answered by Dr. Ansari tomorrow. Of course, I will update again once we have talked to him.

Wanted: A Plan

2010-01-19T17:49:00.005-05:00

After leaving several very sternly worded messages yesterday on four different voice mail boxes, I finally talked to a human being today. A couple human beings, as a matter of fact.

I called Dr. Ansari's office today and told them our plight. I also added that I was not interested in leaving another message on another voicemail, so could she PLEASE NOT TRANSFER ME TO ANOTHER VOICEMAIL AND JUST GET A PERSON ON THE PHONE THAT CAN DIRECTLY ANSWER MY QUESTIONS THANK YOU VERY MUCH. And she did.

My question was simple: Have Dr. House and Dr. Ansari had an opportunity to discuss the surgical options presented to us last Tuesday?

The answer, also simple: No.

My response: Unacceptable.

Then I called Dr. House's office in Indianapolis where I spoke with a very delightful young lady named Jessica. She was very sweet and answered every single question. When I told her we had been waiting six days (!!! SIX DAYS !!!) for information, she asked if she could put me on hold and she would get some answers for us right then.

It seemed that Dr. House and Dr. Ansari were playing phone tag on Wednesday and Thursday, and then Dr. Ansari left town on Friday. She assured me that they would be making contact today. She said that she was told by Dr. House to TENTATIVELY schedule Johnny for surgery on February 15th, but didn't have a description of the surgery, she was just "holding a spot" on the schedule. She also added that it was very out of character for Dr. House to not follow through with phone calls. Hmm. I don't know about that, but I hope it is the truth and this is just a fluky situation. I will not be happy if this is the set pattern for all of our interactions with him. From our initial meeting with him, he seemed like a decent, upstanding kinda guy -- not the kind that would say he was going to call and then just not do it.

This afternoon, Dr. Ansari's office called and asked that we come in tomorrow to speak directly with him. He had not yet spoken to Dr. House (at 1 p.m.) but would before our meeting tomorrow and we would come up with a plan at that time.

So, I guess the bottom line is we still don't know what we are doing for sure, but it looks like at least there is a tentative date set. Hopefully, tomorrow more questions will be answered than asked and we will leave Dr. Ansari's office with a plan.

That is exactly what we need . . . A plan.

No News is . . . well, no news.

2010-01-17T21:58:00.004-05:00

I thought I better log on and blog for everyone that is waiting to hear which option we are going with . . .

Well, we still don't know.

Dr. House was supposed to call on either Thursday or Friday, and that never happened. Obviously there are a million reasons why that call never came, but I have to tell you it doesn't make it any easier to handle.

Johnny's theory is that Dr. House and Dr. Ansari never made contact, which could definitely be the case. Who knows.

I called Dr. Ansari's office on Friday to see if they knew anything, and they couldn't say for sure whether or not both physician's spoke. Dr. Ansari was out of the office (and on a plane!) so the office staff didn't know what to tell me. I just hope that Dr. Ansari isn't gone for like 4 weeks or something crazy like that!

I can guarantee you that I will be in contact with Dr. House's office tomorrow and I will know something by the end of the day tomorrow. I WILL KNOW SOMETHING BY THE END OF THE DAY TOMORROW.

Fortunately, I work with Dr. Ansari's brother and will be on his tail tomorrow to find out how long Rafat will be out of town.

In other news . . .

Did anyone go to the Hunter Ice Festival in downtown Niles this weekend? I have to say that our little town really had an excellent turnout for the event. I haven't seen that many people walking around town in a very long time. It was so nice to see people enjoying themselves.

Even I enjoyed myself at the wine tasting tent for a little while on Saturday night. I was on call, so I couldn't taste all the great wines, but it was nice to be out socializing.

Filling in the Blanks

2010-01-13T12:12:00.006-05:00

Scarlett O'hara said, "Tomorrow is another day." She was right.

As you may have guessed from last night's post, the news we received in Indianapolis yesterday wasn't exactly what we wanted to hear. I'll give you the longer version of that visit today, as promised.

Our trip to Indy was completely uneventful (thank you, God!) and we made it to the hospital without any issues (thank you, TomTom!). I guess I am now officially spoiled by my new hospital, because I was totally underwhelmed by the waiting room and exam rooms. The last update either one received was circa 1979; however, the rest of the hospital was very nice, I should add. Am I focusing on the wrong thing here?

Every single person we encountered was very kind and very professional. When the medical assistant was finished taking Johnny's history she told us that she just knew we would really like Dr. House. She was so right. He is a young, energetic, confident man who is a great communicator and looks you straight in the eye when he speaks to you. I like that in a person, even more so in the guy who is going to help my Toad.

He starts in by doing a physical evaluation of Johnny and tells us that he has studied the MRI that was performed here. He says, "The liver has significantly more involvement than what the PET scans demonstrate." There are multiple malignancies still growing in the liver and the process for ridding Johnny's liver of all the cancer will not be as easy as just cutting them out or ablating (burning) them. We were so upset when we thought there was a possibility of 6 lesions, so I asked Dr. House about the actual number that he saw. "More than 20?" I asked. "More like 12, maybe more," was his response. The problem, he explained, is that if there are 12 or 20, then why not 100? Microscopically, there is no way to tell what has yet to produce a lesion. There is no single section of Johnny's liver that isn't involved.

Minimally we are looking at an extensive operation with additional chemotherapy directed straight in to the hepatic artery. Potentially we could be looking at two very extensive operations with removal of the entire right lobe of Johnny's liver (the biggest part). All of this is conditional on the response of the lesions in the left pole of the liver; we need the left side cleared for anything to really work. The good news, he tells us, is that he has been involved with several patients with whom this process has been successful. Additionally, Johnny is young and otherwise healthy. His liver function tests are STILL normal -- Crazy, isn't it?

Fortunately, Dr. House has two options available to us. Two options going in makes us much more comfortable with trying either one of them. Both hold anywhere from 70-80% response rates. According to Johnny's math, that gives us a 140-160% chance! I love his math skills!

Let me break down the options for you:

OPTION 1:

Surgery to remove the remaining ulcer in the colon.
Clear the left side of the liver of as many lesions as possible (resection).
Remove the gallbladder (This will die from the chemo, so best to remove it up front.)
Insert a hockey puck-sized reservoir directly into the hepatic artery for infusion of the liver with intensive chemotherapy. Four months worth of additional chemo to the liver with additional systemic (through his existing port) chemo.

Pros and Cons of OPTION 1:

Less involved option from the surgical standpoint.
Least amount of native liver removed.
New procedure that may require travel to New York once a month to have the reservoir filled.

OPTION 2:

Removal of the remaining ulcer in the colon.
Removal of the gallbladder.
Removal of the left-sided tumors in preparation of the "future liver". This is the term Dr. House gave the left side because should the right lobe be removed, the left side will eventually regrow (Yes, the liver regenerates itself or this procedure would not be possible.) into the functioning liver.
Embolization (cutting off the blood supply) to the portal vein to the right side of the liver.
Second surgery, approximately 8 weeks later, to completely resect the right lobe.
Additional chemotherapy.

Pros and Cons of OPTION 2:

Very extensive and involved 2-phase surgical process.
Loss of 2/3 of the native liver.
Chemotherapy is not infused directly into the liver.

Option 1 is our first choice. But, as I mentioned above it is a new procedure and very few oncologists are actually trained in the management of the implanted infusion pump. Dr. House is calling Dr. Ansari to discuss the possibility of having it managed here. If this isn't something that Dr. Ansari feels comfortable with, then we will look at other options which may include having the pump placed at the time of surgery, and going to New York once a month for 4-12 months to have the reservoir filled.

We could tell that this was the option that Dr. House was the most interested in, but of course there are roadblocks -- like getting to New York once a month. We told him that we have the most incredible support system at home and that nothing was impossible for us to do. Once we said that we are completely capable of getting there, his excitement in this option increased. I will drive Johnny to the end of the Earth once a month if it means I get to keep him. It is an outpatient procedure, so it would be a quick turnaround trip. Drive in, fill the tank, drive home. We could manage that in a weekend, easily.

Dr. House did an intensive fellowship at Sloan-Kettering involving this procedure and worked with the "father" of the technique. He said that getting in wouldn't be a problem, as a matter of fact he said he could get us in same day if need be. Seriously, he oozed confidence on this procedure. Very reassuring.

Starting with Option 1 leaves us with Option 2 open should the pump not take care of all of the lesions throughout the rest of the liver. Remember the two "BIG" lesions we were so worried about? Those are the "easy" ones according to Dr. House. "Cherry picking" is what he called it. Dang, I spent a lot of energy worrying about those two things, I could have spent my worry much more efficiently had I known!

It was just so much to absorb last night. Both Johnny and I had our brief meltdowns, but pulled it back together with the reassurance of Ginger in the backseat. (Have I ever mentioned how much I love my MIL?) This is not going to be easy. We know that. We also know that we have a HUGE support system who pray for us daily. You seriously don't know how comforting that is for our whole family.

So, the fight continues. We will never, ever give up. Please continue to pray for all of us, our entire families, and of course our medical professionals. We need you all now, more than ever.

Oh, one more thing: I have started a list for when we pack for the surgery. I am looking for suggestions of things I just have to take with us, for either Johnny, me, or Ginger. You know, things like our own tissues, chapstick, lotion, decks of cards. If you have a suggestion, please let me know. I want to be prepared!

Love, love, love to you all.

In a Nutshell

2010-01-12T22:20:00.002-05:00

I know so many of you are waiting for this post, but I have to make it short tonight. I will fill in all of the details tomorrow when I have had more time to process everything we talked over with the surgeon.

So, in a nutshell:

We LOVED Dr. House.

Biopsies from the colonoscopy showed that the malignancy is entirely gone (from the colon).

Johnny's liver is significantly more involved than we thought, throughout the entire liver.

We are going to be very, very aggressive with both surgery and additional chemotherapy.

We have two options on our plates.

He will NOT need a colostomy.

I may get to finally see New York, after all.

Please pray -- a lot.

I promise that I'll fill in the blanks tomorrow. Please know that we are OK. We will still beat this. It just is going to be a much longer and involved process than we originally thought. In the ups and downs department, today was a down -- with options.

Can I Get a WOOT WOOT!

2010-01-06T21:09:00.009-05:00

I love Rafat Ansari.

I am seriously contemplating having that prominently tattooed on my body.

Talking with him makes me feel like things are going to be just fine. I love that about him. Obviously things went very well with Johnny's doctor appointment today, or I wouldn't even consider an "I heart Rafat" tattoo.

Our first concern was the PET scan. Dr. Ansari explained that having three different radiologist reading each scan was the problem. Imagine three people standing in front of a Picasso painting. Each will see something and explain the painting completely different than the other. Same deal here. He feels that the lesions were all on the last scan, but that they appear to be more like scars from healed lesions so they weren't mentioned last time. This time the radiologist felt like it was comment-worthy, thus six lesions versus two lesions.

The MRI report was more accurate with lesion measurements and locations and goes along with what was reported on the previous MRIs. Dr. Ansari felt that this was a much more accurate description of what is actually going on in Johnny's liver.

Dr. Ansari was really pleased with the results from the colonoscopy as well. Even though there is only a small ulcer left, he said that without a doubt it has to come out. We figured as much and it actually makes us feel better to know that it is going to be removed. We still don't know what this means in relation to a temporary/permanent colostomy. I think it drastically improves our chances for avoiding a colostomy altogether.

As far as the lesions in the liver and how they will be handled is up to the surgeon in Indianapolis. Dr. Ansari believes that he will remove the biggest two lesions and possibly some of the other ones that appear to be scars. At the very least he will take tissue samples from the small lesions that will be checked by a pathologist while Johnny is still in surgery. Minimally, they will do radiofrequency ablation (basically burn them) on the small scar-like lesions just to make sure they don't decide to grow up to be big lesions.

Now we move on to the next step which is our visit to Indy next Tuesday. Hopefully, Dr. House will be as great as Dr. Ansari and when we leave his office we will be completely confident with the plan. I already feel pretty good about it, to tell you the truth.

Johnny and I talked a lot about the surgery. He just wants to hear Dr. House say that it is an operation that he can perform. He still feels like it is up in the air whether or not Dr. House will accept the challenge. I'm relatively confident that he is going to rub his hands together while salivating over the opportunity to get at Johnny's liver. I am also concerned about the operation itself and all the things that can go on during a surgery (this is another one of those situation where a little knowledge goes a long way). Johnny is more concerned about the recovery. Dr. Ansari said that it will be about 2-3 months before Johnny will be up and around on his own. I know that open abdominal surgeries are a tough recovery, but I think Johnny being young and in relatively good shape is to his advantage. Again, this is where that butt-smokin' hot thing with healing comes in to play.

Until next Tuesday I will be praying my socks off that Dr. House not only feels like this surgery is do-able, but is anxious to accept the challenge and can get the surgery scheduled as soon as possible. We are hoping within a week of the office visit that we will be able to get on the surgery schedule. I will definitely make sure that it is his first surgery of the day, on a day when Dr. House hasn't been on call the night before, that he hasn't had a recent fight with his wife, and that he has a nutritionally complete hot breakfast. I'll even provide the breakfast.

I'll just need you guys to continue providing the prayers.

Happy New Year

2010-01-04T18:34:00.003-05:00

This is my first post of 2010! And with it comes good news and well, maybe a little not so good news, too.

Since the last time I wrote, Johnny has had a PET/CT scan, an MRI, and a colonoscopy. Seriously, this dude knows how to party!

OK, so lets get the "not-so-good" news out of the way. The MRI results showed worsening of the liver. On the last scan there were two lesions. This scan showed a total of six lesions. What does this mean? We really don't know yet. It could just be that the lesions were "immature" and didn't enhance on the previous scans. I look at it like when you plant seeds -- they are in the ground and have to eventually bloom. Perhaps the cancer cells were there on the previous scan and just hadn't "bloomed" yet. I plan on asking Dr. Ansari about this theory on Wednesday.

Also, the lymph nodes continued to be clear. This tells me that there wasn't any more traveling to regions unknown. This also increases my confidence that the liver issues will be handled with surgery.

Now the really good news. Johnny's colonoscopy showed DRAMATIC improvement. On the previous study (at diagnosis) the tumor had almost completely obstructed the colon, and the tumor itself was approximately 6 inches long. On today's study, Dr. O'dea was jubilant when he came in to give me the results. When you compare the previous pictures with the current pictures it is amazing! The remaining lesion is only about 1/3 of an inch wide and one inch long. Dr. O'dea said that now it basically appears to be an ulcer that looks benign. However, since we know that is where the center of the primary cancer was located, it would make sense to have it removed regardless of the results from the tissue samples (biopsy).

So, where do we stand with things now? Well, we see Dr. Ansari on Wednesday and he will (hopefully) answer the millions of questions that I have come up with since the re-staging process began. We will meet Dr. House in Indianapolis on Tuesday, January 12th and finalize our plan for surgery. Again, I have a million questions that I will be asking in Indianapolis, too.

As you might just imagine, after the news about the liver I had a moment of temporary implosion. I am still terribly worried about it, but Johnny has a very unique way of talking through things with me that can get me refocused and calmed down. How pitiful that he has to do that when he is the one going through so much -- but we are a good team like that. I am so thankful that his attitude and outlook have been positive since he was diagnosed. He is an amazing guy.

~~~~

This past weekend we went to Boyne Highlands in Petoskey, Michigan for a little getaway. Jim and Molly, Dan and Aida, all our kids and a two other Niles families (Hi, McKeel's and Stephensons!) went to snowboard and tube. How FUN! It was just the weekend we were looking for. Fun in the snow, hot tub and sauna and big beautiful rooms with fireplaces! It was wonderful but entirely too short.

Unfortunately on the way home from Petoskey, we came upon an accident that had just happened and I got out to see if I could help. Without getting graphic, let me just say that it was the worst trauma scene I have ever experienced. The dad (Brad - 37 years old) died at the scene and I stayed with the wife until help arrived and they could be extracted from the SUV. Their two small children (18 months and approximately 3) had to be removed through the rear window. The children and wife were basically uninjured, but the husband probably died from severe head trauma. As we waited for help, the wife (Julie) spoke very calmly and told me that she was a medical professional (physical therapist, as was her husband) and she knew that his injuries weren't recoverable. My heart broke as I watched her say goodbye to him. I was struck with how fleeting life really is. There are no guarantees, are there? She had no idea when she woke up on Sunday that it would be his last day. I prayed for them the entire rest of the way home and through most of the night.

I also thanked God for the many blessings I have received in my life. When you lay awake at night and just start thinking through what you have been given, it is surprising what you can come up with! I ran the gamut from my daisy flowered dress in Kindergarten, to my first puppy, to my friend Ruthy who used to play Squad 51 with me, along with about a million other random thoughts. Of course all of the important stuff made my list, too.

I just feel overwhelmingly thankful right now.

This is going to be my New Year's Resolution -- to be thankful every single day for the important AND random. The big and the small. The obvious and the obscure.

It is going to be a great year.

Post Christmas Laziness

2009-12-26T16:31:00.003-05:00

We made it through the holidays! Did you?

This was probably one of the most low key Christmases we have ever had, and you know what? I kinda liked it! Obviously Johnny was feeling good enough to participate, but still tired very easily. Whenever he was ready to head home, that's what we did.

There were a few things that we had to miss out on, but we know that our friends and family understand that this year is just a little bit "different" for us. We are very confident that next year we will be able to fully participate in all of the craziness that the holidays offer.

Today was gloriously lazy. We slept in so late, I'm embarrassed to say what time we finally started to move. Quinn is snowboarding at Swiss Valley with friends and Jake has his best friend, Dylan, over to stay the night. Johnny is making jambalaya for dinner and I am just putzing on the computer.

Chemo is becoming a distant memory already . . .

Now that Johnny has completed this ordeal, we have all of the tests scheduled for "re-staging" his cancer. Here is the upcoming schedule of events:

Monday, December 28th: PET/CT scan
Tuesday, December 29th: MRI scan
Monday, January 4th: Colonoscopy
Wednesday, January 6th: Office visit with Dr. Ansari to review scans/colonoscopy
Tuesday, January 12th: Meet Dr. House at IU Med Center to plan and schedule surgery.

I'm excited to hear how well the chemo has worked, but also so very hesitant to get over confident. I would love to hear that everything is gone, or at least so insignificant that surgery will be a piece of cake. I am scared to death to find out that any of the cancer has traveled or become stubborn and has not reduced any from the previous set of scans.

I'll be so relieved again when we have the surgery plan. Again, I feel like we are in a state of limbo. When Johnny was diagnosed I felt this way to a much greater degree while we waited for our plan of attack and chemo schedule. Once the surgery is scheduled, I'll feel better. When the surgery is OVER and I have him back home to heal, I'll feel even better yet!

That's where we stand for now. Please continue to pray for Johnny's body to heal and for his lab values to recover before he has surgery. Also, we could still use some prayers for his blood pressure. That darn blood pressure!

Don't worry, if I get any word at all on the scans before our appointment with Dr. Ansari I'll let everyone know. Have I ever been able to keep this kind of stuff to myself?!!?

Not a creature was stirring . . .

2009-12-22T17:06:00.002-05:00

especially Toad!

It is Chemo Tuesday and staying true to his modus operandi, Johnny is sound asleep. He woke a few minutes ago to have a snack and to tell me that he is feeling "pretty good". Makes me happy when he says that!

Yesterday we went and had our little chat with Dr. Ansari like we do every other Monday. He is very happy with the CEA level, which is holding steady at 3.4. To Dr. Ansari, this is a "normal" level. Although normal doesn't mean Johnny is cancer-free it does mean that the chemo has done as much as it could possibly do. Now the only thing left in order to properly kick cancer's booty is to surgically remove any little bits that may be left over.

Dr. Ansari had previously talked to us about a surgeon at IU Med Center named Mary Maluccio. However, after talking with her and finding out that her specialty has primarily moved in the direction of liver transplants, he has decided that Dr. House is the best match for us. I have actually heard other physicians speak of Dr. House and that makes me feel pretty good. I swear if he walks into the exam room with a cane and a limp, we are high-tailing it out of there! I really can't stand that show AT ALL! Although, the outcomes are usually pretty good, so I should be encouraged by that -- right?

Johnny talked to Dr. Ansari about all of his remnant effects from the chemo. His feet are BAD, not in a terribly painful way, but numb and super cold all the time. His hands seem to have improved since he started taking the Neurontin. He is having occassional nosebleeds, but these have never been unstoppable, just annoying. Another thing we have been noticing is his loss of body hair. Weird. He hasn't lost any of the hair from his head (Insert your own bald joke here) but his back hair is almost completely gone (and the heaven's parted while the angels sang) with the exception of that cute little chia pet that lives above his butt. I think that is cute, so I hope it doesn't fall out. His legs look like he is suffering from mange. One whole side of his leg is completely smooth as a baby's butt, but then he has a horse's mane running down his shin. Totally bizarre hair patterns on his legs. And his mustache has only about 36 hairs left to it. He told me last night that he is shaving it off. NO!!! Most of you know that Johnny has only been mustache free TWICE since I have known him. Once for a Halloween costume (Mr. Clean -- which incidentally was the first time he ever shaved his head and then never grew it out again!) and the other time was because he lost a bet to his minor league baseball team. I don't like it when he doesn't have a mustache. Not. one. bit. I hope it will eventually grow back in. I agree with Johnny, it does look a little sparse!

His blood pressure continues to be high, but since this is the last session we are just sticking with the 10 mg of Amlodipine (Norvasc) and watching to see if it comes down and stays down without the chemo on board.

When they accessed his port yesterday the darn thing was really being stupid. It wouldn't allow them to draw from it, so to speed things up Johnny had to have labs drawn from a vein. That isn't the worst thing, but the port was designed to eliminate the need for additional sticks. When they attempted hooking up the chemo, it still wasn't working. They ended up accessing the port a second time with a different needle and that seemed to do the trick. After being there for almost two hours he was finally infusing for the 12th and FINAL time!!

Even though chemo is just the last thing on the planet anyone would ever want to do, I have to say there is an element that we are going to miss. We have made some dear friends with whom we sit and pass the time. May finished her chemo in November (Hi, May!!) and we are keeping in touch via the blog and Facebook. She had colon cancer, too. Another dear friend that we will miss is Carol. Carol has breast cancer and is a joy to talk with. Her protocol for chemo is quite different and has a longer time between sessions, but will also have to go longer until she has completed her entire gig. (Hi, Carol!! I hope you found the blog easily!!) Carol told us she isn't really in to technology, but likes to keep in touch via email so that is what we are going to do!

I will also miss spending an entire day with Johnny every other week. I know I still have some quality/quantity time coming up with his surgery, but I never have enough time with him.

The rest of the time at the infusion center yesterday was pretty uneventful (thankfully!). Once we got home, Johnny headed to bed and I tried to get things organized for Christmas. I still haven't wrapped anything, mostly because I just despise wrapping. Yuck. Tonight my plan is to sit in front of the television (something I never do) and wrap away until the wee hours of the night. I have to get as much as possible done tonight because I'm on call tomorrow (Wednesday) and Thursday is already Christmas Eve! As Charlie Brown would say: Aaarrrrrrgggghhh!

I'm looking forward to Christmas this year like crazy. Funny how a little perspective check like cancer can make the reason for the celebration of Christmas seem so much more important than the gifts. I like that.

Off now to wrap the presents while my Toad Prince sleeps in heavenly peace.

Last Day of Chemo!

2009-12-21T22:37:00.002-05:00

This will be a short post tonight, but I promise a longer more detailed post tomorrow when I can hopefully find a little more time.

Chemo #12 went relatively well. The port had to try and show us that it was the boss today by being really finicky . . . but Johnny prevailed and chemo went on as scheduled.

Johnny's body is just very tired and needs to rest this week so that Christmas can be as normal as possible. He is as comfortable as he can be at this point with the pump still attached and looks forward to Wednesday when he considers chemo to be over for good.

I'll update tomorrow with all of our upcoming appointments and test schedule. He is going to be a busy boy over the next couple weeks!!

Much love to everyone that is keeping up with the blog even though I've been so lame with it lately!

I PROMISE TOMORROW I'LL POST WITH GUSTO!!

We are still here!

2009-12-16T21:31:00.003-05:00

Please don't forget about us!!!

I know I have been absolutely terrible about updating Johnny's blog lately . . . but you know, right now BUSY is an understatement.

Let's recap: It is Christmastime. That in itself makes all of us Crazy Busy! Then we have all the various school parties, programs, concerts, etc. Anyone with kids knows how this just zaps your time! (Side Note: Why do I ALWAYS wait until the last moment to iron the outfits the kids need for the appropriate performance? Every. Single. Time.) Then on top of all the Holiday Preparations it just so happens that the hospital I have worked in for 18 years decided to pack up and move. No small undertaking. Add to that being on call, and it just about takes every last second of my time.

The good news is: The Christmas cards are in the mail (except the ones with address changes :O] ) and the Christmas presents have been purchased with only a couple exceptions. Nothing is wrapped, though. That is for this weekend. The hospital has successfully moved across town to Mishawaka. If you haven't seen it, it is worth the trip over there. GORGEOUS! And tonight was the last program of the season (Quinn's band concert). Only a couple things left to do, and I will officially be ready for Christmas.

Which brings me to Johnny . . . the whole reason we meet here on a relatively regular basis, right?

He is just so ready for this all to be finished . . . he is physically exhausted. His body is starting to harbor true hatred for all the chemical toxins that have been pumped into it. The bottoms of his feet have completely peeled off numerous times, as have the skin on his hands. He complains of pain (a neurological effect that should go away with time) in his hands and feet on a daily basis. The cold intolerance persists. Nose bleeds are a new and annoying visitor. We know that things could be so much worse for Johnny, and we are thankful that his truly bad days have been kept to a minimum. Just one more to get through. Thank you, God.

My prayers persist and I hope you are still with us through all of this. Please forgive me for the infrequent updates over the last couple weeks. I promise, when we are settled in our new department and Christmas is over, the updates will become more regular and consistent. We appreciate knowing you are out there praying for us on a daily basis. Keep it up, will you?

Number Eleven

2009-12-07T19:55:00.005-05:00

When Johnny had his very first chemotherapy cycle I thought there was no way we were going to make it all the way through twelve. Do you remember the monster battles and sewer screaming? Me, too.

We have made it through Number Eleven, and even though the pump is still attached we can see the light at the end of the tunnel. Man, does that feel good.

Today in our meeting with Dr. Ansari we talked about Johnny's blood pressure a little more. It is being stubborn and doesn't want to come down and stay down. It has come down for a day or two, but then heads back up to the 160/100 range. Not acceptable at all. We have doubled his dosage for the second time and hope that with the last session on the horizon, it is all we will have to do. Dr. Ansari has assured us that after chemo is over, this problem will resolve with time.

Johnny's feet have become the biggest source of frustration. They are completely numb on the bottom and burn when they get cold (which happens if he even walks on the hardwood floors!). They have also started to peel and darken, just like his hands have been doing. Again, we are assured this will go away, if not completely then mostly. He was started on Neurontin to help with the pain associated with all of this.

A couple times over the last two weeks he has sprung a nosebleed. Nothing that scared either one of us, but worth mentioning to the doctor, nonetheless. He wasn't too concerned.

His lab values have remained strong. His liver function labs have been elevated, but that is expected what with cancer in the liver and all the nasty chemicals we have been sending that way to invade the tumors. Today his platelet count was the lowest it has been at 101, but again not too concerning. Nobody even blinked today when they got the results. The really, really good news with is labs is that his CEA level has gone down yet again! Today it was 3.4! That is nearly unbelievable. Johnny's nurse today said, "I just can't imagine that it can go any lower, but you have proven me wrong before!"

We finally have the name of the surgeon, too. Her name is Mary Maluccio. Johnny was thrilled that the surgeon is a woman. His theory is that women still have to try so much harder to become a surgeon in a male dominated field, so she must be EXCELLENT! We will get to meet her after the first of the year and make that determination on our own.

If you don't mind me asking again, I'd love it if you would all continue with the prayers. I know you are busy with Christmas shopping, baking, decorating and all that but just throw up a "Hey, You!" on our behalf every now and then. Thanks.

Mr. Jett

2009-12-02T19:30:00.021-05:00

Be not forgetful to entertain strangers;

for thereby some have entertained angels unawares.

Hebrews 13:2

Mr. Jett is my angel. I don't even know his first name, or where he lives but I believe he is a genuine angel.

Have you ever driven past someone holding up a sign that says "Will Work For Food." It seems lately there are a lot more than ever before. I often wonder what the story is behind the person holding the sign. Family man with hungry kids at home, down on his luck because he has lost a job that he held for 15 years? Single mom that just can't make ends meet since her husband walked out leaving her alone with three kids? Oh, I can make up some really great stories in my head about these folks. Sometimes, I am ashamed to say, I think that maybe they are just lazy and not interested in finding a real job. When I think it through, though, it can't be easy to stand out on a corner for hours in the hopes of finding a couple people that may stop and help out with some cash or groceries.

On Redfield Road where Gumwood does the little jog, there is a white haired gentleman that holds his sign: Will Work For Food. God Bless You.

He usually doesn't show up until the end of the month. In my imagination it is because he has made his meager Social Security hold out as long as possible, and by the 25th or so of each month there is just nothing left. I've never bothered to ask him what the story is because it wouldn't change why I stop.

I had seen him at that location a couple times before and had never stopped. For some reason, I couldn't get him out of my head. I fantasized in my head that he was an angel and was watching to see how the world treated him. Maybe he was reporting back to the Big Guy himself. I decided if I ever saw him again, I would stop.

Several months passed and I kept wondering if he would no longer come to "his" spot. And then on a cold day, I made the left turn off Gumwood on to Redfield and there he was. He was standing there holding his sign and wearing an old winter coat and yard gloves. I'm not sure why, but my heart actually pounded in my chest.

I drove past him, making the right turn back on to Gumwood. What should I do? Instantly I thought that I should go buy him some groceries. I turned around and went to the Pay and Pack It on 933 (This was before the Martin's at Heritage Square was open) and bought $20 worth of groceries.

I took the groceries back to him and handed the bags out the window. He said, "God Bless You!" and I thought, "A-HA! You are here on a mission from God!" It was settled. He was my Angel on Redfield Road, and I vowed that I would ALWAYS take the time to stop what I was doing when I saw him and provide him with something. No matter what, if I see him standing there I automatically stop what I had set out to do and change my path to provide for him.

Believe me, there have been several times that I wanted to pretend like he wasn't there or to take another route entirely thinking that he probably WOULD be there and I just didn't have the time to stop. Not allowed.

I have had the kids with me on a number of occasions, as well. It has been a great lesson for them, as well as for myself. We have had great conversations about how people end up in that situation, how we can help, how we wish other people would not judge and just help out, too. We have also talked about how blessed we have been and that we should show our appreciation to God by helping out some of his less fortunate souls here on Earth. They know that I consider him "My Angel" and have adopted him as their own as well.

Once when I stopped, I decided I would ask his name. I rolled down my window to hand him the groceries, and said, "Hi, my name is Pam and I just wanted to bring you a few groceries. I thought maybe you could use them." He said, "Oh, I remember you. You have stopped before. My name is Jett, just like the airplane. Jay-Ee-Tee-Tee, Jett. I remember your car."

I was so happy that he actually recognized my car and knew that I had stopped before. I felt that maybe I scored some extra points upstairs since he recognized me -- silly, I know. He went on to tell me that he was alone now, his wife had been in a nursing home for a couple years and he just couldn't make it to the end of the month without a little help anymore.

That's all I know about him. I have no idea if he is crazy or pulling a fast one, and to tell you the truth: I don't care. My God and Father knows what is in my heart and that is all that matters.

Since Christmastime is fast approaching, it is a good time to reflect on how fortunate we are and to possibly help those around us. Everyone has a story, and everyone is dealing with something. Until you have walked two moons in someone else's moccasins, it isn't fair to judge them. Every unfortunate person you encounter may not be an angel you are entertaining, but hey -- You never know!

Chemo Brain

2009-11-29T16:58:00.002-05:00

One of the most annoying thing about chemotherapy for us to deal with is what we lovingly refer to as "Chemo Brain." It is the foggy state that Johnny resides in from the time chemo starts until the end of chemo week. Actually, it lasts a little longer than that, but I don't want to make Johnny feel bad.

How can I describe chemo brain . . . .

Some of you may have talked to Johnny on the phone during this time, only to have him suddenly change subjects or abruptly say good-bye and hang up. Chemo brain.

You may have called or stopped by and talked at great length with him about very important matters, such as someone shooting a giant buck and the next day he can't remember who shot the big buck. Chemo brain.

Maybe you are married to him and you keep reminding and reminding him to NOT LEAVE THE HOUSE without calling you at work to let you know what is going on. Then, when he is reminded that he has DONE IT AGAIN!!! he is surprised with the severity of your anger. Chemo brain.

Oh, so many examples.

Here is an actual conversation that just took place yesterday:

Johnny: (After watching Diners, Drive-Ins, and Dives) That Guy Harvey gets to eat at some amazing places.

Me: Honey, it is Guy Fieri.

Johnny: Oh, yeah. Guy Harvey is the dude that says, "And now you know the rest of the story."

Me: Ummm. No, babe, that is Paul Harvey.

Johnny: I must be thinking of the baseball player. . .

Me: Seriously? That's Steve Garvey.

Johnny: Then who the heck is Guy Harvey?

Chemo Brain. Actually, Guy Harvey is a real person. He is an artist that paints mostly fishing murals and he has a line of shirts that Johnny likes in the Florida Keys. He also has a wonderful restaurant in Key West. So, he wasn't entirely off base with having the name in his brain.

Hunting season (gun) is over tomorrow, and it hasn't been very productive for this Brawley household. We still have the rest of archery season and shortly muzzle loader season.

Hope everyone had a great Thanksgiving! Lots and lots to be thankful for!!

Number Ten

2009-11-23T23:10:00.003-05:00

Just when we are getting this chemo business down pat, we are running out of sessions. Don't get me wrong, I am happy to be close to the end of this business, but there are a bunch of really cool people we have crossed paths with on this journey. (MISSED YOU TODAY, MAY!!!)

Number one concern for this cycle was Johnny's blood pressure. Dr. Ansari doubled his blood pressure medicine, so hopefully we will see this improve quickly. I'm taking his BP daily now, and am getting anxious to see results. Today's pressure in the office was approximately 170/126. Yuck. He slept most of the time at chemo, and he attributes it to his blood pressure. When the heart is working that hard to pump, it stands to reason that you'll tire easily.

Second concern for this visit with Dr. Ansari was Johnny's weight gain. Since July 8th he has gained a total of 16 pounds. Dr. Ansari was relentless in his teasing today and even told the new nurse practitioner, Brandi, to stay away from Johnny or he might eat her! Most people have such a hard time with chemo that weight gain usually isn't even a consideration. We all know that Johnny isn't "most people". To quote Dr. Ansari, "You are thriving on chemo."

His feet and hands really bother him the most of anything. His hands are so sensitive and are peeling layers and layers of skin daily. The pads of his fingertips are like baby skin -- so soft! The skin peels so quickly that there really isn't even a fingerprint on the tips of his index fingers. The neuropathy is moving to his feet as well. They feel "swollen" even though they aren't and have started to turn the dark color that his hands are. He says that there is a lot of burning, too. I gave him a long foot rub tonight when I tucked him in and used warm foot lotion (one of my favorites!) from Lush. He said they felt better after that which really made me happy. It is so hard to find something that I can do to help him feel better. Even something little like a foot rub makes me feel like I have helped out a little.

Dr. Ansari also said today that we will be going to Indianapolis for surgery. IU Med Center has a surgical oncology program that is currently ranked second in the country. It is second to Johns Hopkins in Baltimore (one of the early considerations for surgery). The doctors responsible for heading this program had their training at Johns Hopkins and Memorial Sloan-Kettering in New York. It is quickly becoming the "go to" spot for this region of the country. We are completely confident with this and are looking forward to completing some more details in the upcoming weeks. With the next step in the plan on the horizon it is really easy to get excited about being in COMPLETE REMISSION very soon.

Additional good news today came from Johnny's CEA level. At last report is was 3.7, and today it was 3.6. It continues to show its demise, and I love it.

Please continue to pray for Johnny and our family. I really want his blood pressure to come down this week, so that is my frontline prayer.

And remember in this season of Thanksgiving to count your blessings each and every day. Life is good, people. Life is good. And love. Love is really good.

Apologies!

2009-11-22T20:14:00.002-05:00

I promised if Johnny shot anything, I would update the blog. As you have probably noticed, there have been no updates since November 13th. The reason for this is simple: no deer.

In addition to Johnny being gone MOST of the time since his last chemo session, I have been very busy at work with our new hospital just about ready to open. Believe me when I say, there is a lot that goes into training when you open a brand new, state-of-the-art hospital!

So, I apologize profusely to those of you whom I've disappointed with my lack of blogging. Tomorrow is chemo and as always, I will update to let you all know how Johnny is doing this week.

I'm on my own this time (no Crazy MIL - the family is in the U.P. for Thanksgiving) so I will be off on Monday and Tuesday to take care of Johnny. We are super sad that we can't go to Thanksgiving in the U.P. this year, but the chemo schedule just got in the way. There is always next year . . .

Looking forward to completing #10 tomorrow. Double digits and only TWO more after tomorrow is done. Last cycle is schedule for December 21st -- Just in time for Christmas!

Opening Day is Upon Us

2009-11-13T20:29:00.004-05:00

Oh, yeah, Hunting Season. I almost forgot about you. Well, come on . . . Johnny's been waiting for you.

With everything that has been going on in our lives since summer (yeah, we have been a little preoccupied) hunting season's approach went almost unnoticed by me. But, here it is just 36 hours or so before Opening Day. Don't you think this should be an official State Holiday? I know I do. Johnny has been in near panic mode this week to get prepared for Sunday.

Monday's chemo went pretty well, so he was confident that this weekend would not be a problem to get out to the woods and do what he does best (well . . . ). But then came Tuesday. It was a rough one. Remember the post where I discussed the Magic Elixir? It came down to that on Tuesday. Poor Johnny. He was in a cold sweat and just about as miserable as I have seen him throughout this whole mess. After the Magic Elixir kicked in, he felt better but questioned if he was going to feel fine by this weekend.

The very next day he was out in the woods with his cousin tracking a deer. So, evidently all is well. Yesterday and today both he was out putting up treestands and getting some prime hunting locations ready for the Big Day. Of course, he had a lot of help doing all of this manual labor, but he felt good getting out there and getting it all done. I am happy that he was up to it.

When Opening Day dawns bright and early, Johnny will be where he has been every November 15th since he can remember - in the woods. I will be at home (where I always stay on November 15th, for safety reasons) and will field the 1 million phone calls that will come in. The conversations go something like this:

Caller: Toad there?
Me: No, he's not in yet.
Caller: Anybody get anything?
Me: I'm not sure. I'll have Johnny call you when he gets in or calls.
Caller: I'm headed to Pooh's, have him stop by.
Me: He will be there.

I will have this conversation over and over and over until the end of muzzle loader season. No kidding.

All kidding aside, I couldn't be happier that Johnny will be able to hunt this year. It is a big relief to him, too. Last week when he shot a 6-point with his bow, he was overcome with emotion and I know Sunday will be no different for him. He will be with his dad, brothers and multiple friends over the course of the weekend, and nothing makes him happier!

I know my prayers have included a little, "Hey, how 'bout a nice big 12-point crossing Johnny's path on Sunday." That would just be the icing on the cake.

I promise I will post something if Toad gets the big buck this weekend. As with every single Opening Day, there will be stories to tell. If any of them are "PG" rated, I'll pass them along.

On the prayer request front: Johnny's blood pressure is remaining high. It is chemo-induced, but bothersome nonetheless. We have been tracking it lately, and will contact his primary care physician on Monday for some help in getting it lowered. It should be a short-term thing since he only has three cycles to go but I worry, you know?

May: Hope you are basking in the glow of chemo completion. We will miss you on chemo Mondays!

Heidi: Still looking for you on Facebook!!! Call if you need help - I can walk you through it!! Miss you.

Number Nine

2009-11-09T21:42:00.002-05:00

Nine and counting. . .

It feels better and better each time we leave the infusion center after a treatment. Johnny did well today during his chemo, with very minimal nausea. On the way home we even stopped by to check out a good deal on a "new" Suburban (New is a relative term -- it is a 2000! Still newer than what Johnny currently drives!) and then attended Jake's parent-teacher conference.

OK, can I sidetrack for a moment here on the parent-teacher conferences?

Anyone that knows me, knows that I am near dictatorial when it comes to school. We have the "Zero Electronics" policy Monday through Thursday. . . that's right: nothing with a screen, charger, battery or plug during the school week. I firmly believe that books are a great substitute to Xbox and addictinggames.com. I think our family definitely communicates more and plays more family games as a result (especially during the winter months).

But, when the school year started I was deep in the quagmire of Johnny's chemo schedule and really hadn't focused on the kids academics. Again, no Mother of the Year award headed my direction. When I realized about a week ago that the end of the first marking period was upon us, I discovered that I had no idea where the kids were with things. I hate that feeling.

Both of the boys did very well, with no thanks to me. Jake had straight A's and Quinn had all A's and two B's. Seriously, this was completely on their own, as the Dictator had other things going on in her head.

I thanked both of the boys tonight for staying on top of things with school in the absence of basically both of their parents since school has started. I am so proud of them. I also explained that since we know things with Johnny are going so well, I will be able to step it up as the Great Dictator for the remainder of the school year. Surprisingly, this wasn't met with the response that I thought it deserved!

Back to Johnny -- Johnny has a couple areas of "hyperpigmentation", one on his hand and the other on his head due to the chemo. Nothing serious at all, but is has been noted nonetheless. His blood pressure continues to run high while we are in the office, but at the end of his chemo session, it comes down nicely. I need to check it over the course of the next week to make sure that it comes down and stays down. High BP is also a side affect of the chemo.

We talked about the need for chemo after surgery and Dr. Ansari thinks that if the margins are "clean" then he won't need any more chemotherapy. This part rests in the skilled hands of the surgeon (who has yet to be named).

Johnny is now asleep, and I am heading to bed soon. I go to bed happy tonight knowing that chemo #9 is over for Johnny (ONLY THREE TO GO!) and my boys are actually capable of getting good grades without me constantly on their backs. This is the stuff of which good dreams are made.

Prayers, as always, are deeply appreciated.

What Cancer Can't Do

2009-11-03T21:35:00.004-05:00

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.
It cannot lesson the power of the resurrection.

(Poem borrowed from a poster in the infusion center at Hematology/Oncology. Sorry, I don't know the author.)

Vince, may you rest comfortably in the arms of the angels. Your smile and beautiful blue eyes will be remembered by everyone who ever had the pleasure of meeting you.

Coincidences and Blessings

2009-11-02T19:00:00.005-05:00

Ever since this whole thing with Johnny started, I've wondered "Why?". Ok, not in that "Oh, poor me . . . poor Johnny . . . poor us" kind of way, but just an overall curiosity. Was there something that could have been done to prevent it from happening or is it just what it is? I believe in a certain element of Karma, but not as a means of retribution per se.

I have done enough examination of our circumstances to see some very obvious coincidences.

Coincidence #1:

New Year's Resolutions are fun for me. I make them and by the first of March they are usually completely forgotten, just like everyone else. I tend to not make the whole "Get in shape and lose weight" resolution, because that is just too depressing. I like to go for the more obscure stuff. For example, about three years ago my resolution was to write and send 50 snail mail letters that weren't birthday cards. I had to choose random people, you know not just my family and Johnny's family. Random. Mission NOT accomplished for 2006. However, I have had the opportunity to write to well over 100 people so far this year in an expression of deep gratitude for what has been provided to our family since Johnny's diagnosis. Meals, gifts, bottles of wine, meaningful visits -- all from a varitable random assortment of the people in our lives. Maybe I can count this as delayed resolution fulfillment.

Coincidence #2:

Since the boys were fresh from the womb, Johnny has been the primary parent. I mean that in a really good way. Most kids spend all of their time with mom and not nearly enough with their dad. People know that my job has always been the more time consuming and the one with the more rigid schedule. I punch a timeclock, Johnny never has. He has always been the one to get the boys up in the morning, get them breakfast and ready for the day. Whether it was off to daycare when they were little, or now as big kids getting off to school, Johnny was the one that handled it and did it well. To be perfectly honest, I always felt that I was missing out on that part of my kids "growing up." But since Johnny handled it so well, I also felt the blessing that I could count on him for anything that had to do with raising the boys. On the occasion that I would take over morning duties, I sensed that it wasn't the natural flow for the boys -- almost like I was disrupting the way things worked.

When we knew that Johnny's cancer treatments were going to cause issues with getting the boys up and off to school in the morning, I talked with my boss at work about the possibility of coming in to work at a constant time, and much later than I normally did. Fortunately, it was possible and I have become the primary parent for the very first time.

It has been an opportunity for me that I didn't realize I had been missing out on. I get the boys up for school every day and make sure they have a nice breakfast (This morning: Hot biscuits fresh from the oven and sausage gravy -- YUMMO!). We also use the time on the ride to school to talk and have had some meaningful conversations. I can tell you that Johnny usually takes the 10 extra minutes of sleep route, rather than fixing the scrumptious breakfasts, but hey - I'm not trying to tell him how to do the job!

I don't know if the kids realize how much this has meant to me, but it doesn't matter. The rewards I have received from the bonus time with the boys has been serendipitous.

Coincidence #3:

Until July 8, 2009, no one in this house took prescription medication. I think it was in February or March when a friend at work was looking over some receipts to submit for the before tax funds that come out to pay for medical expenses (What is that called?). She asked me if I had any money taken out for medical expenses and I said, "We don't have anything. None of us take any medications at all." Woo Hoo. You should see the drug stockpile we've got going on now. Johnny has a total of 8 medications that he takes, and I have 3. Seriously, I'm saving all of the pill bottles and will do something very creative with them when this is all over!

Coincidence #4:

Let me get really honest here for a minute. I have been very well taken care of since June 19, 1984. That was the first day that I kissed Johnny Brawley in Quetico National Park, Ontario, Canada. We were on a backpacking and canoe trip (I know you have heard this story before!) and that is when we got together. A few days into the trip I ended up with Strep throat and was very sick. I was laying on a sun-warmed rock to try and absorb the heat while everyone else was eating. Johnny brought me some spaghetti and Kool-aid and told me that I needed to eat and drink something. Yeah, three days in to the relationship and he is already my prince charming. I have been well cared for every day since then. (With very few exceptions.) I have never really had the opportunity/necessity to care for him like he cares for me. He requires so little.

Until now.

I have really taken this newly-acquired job seriously. He deserves it and I really want to do a good job for him. I have a complete ritual that I perform on the Sundays before chemotherapy, just so that he is comfortable for the next three or four days that he will be spending in the bedroom/bathroom. Clean sheets, clean blankets, clean pillows, clean (SANITIZED!) bathroom, clean favorite pajamas, pills all counted out for the upcoming week, remote control placed in close proximity on his bedside table. Whatever I can do to make the chemo week tolerable, I will do. He would do all this and more for me, and I know it.

There is nothing about Johnny's cancer that makes me happy. I hate that he has gone through even one single minute of nausea and discomfort because of all this. What I have discovered is that there are blessings to be found in all circumstances. I have had the blessing of reconnecting with literally hundreds of friends and family over the course of the last 4 months. I have had the blessing of discovering the mom that I knew I could be. I have had the blessing of discovering my ability to handle situations that I had no idea I could handle. And I have had the blessing of showing the man that I love that I meant every word of "in sickness and in health."

And I thank God every single night for all of my blessings.

2/3 Done

2009-10-26T20:14:00.003-04:00

Today was the 8th installment in the 12-part series know as "Toad's Chemo".

To begin with, Johnny was very tired this morning from staying up so late to watch the Yankees win. (SIDE NOTE: Many people don't know this, but Johnny is a big Yankees fan!) I head off to chemo with a sleepy Toad.

Our update with Dr. Ansari held no new information. Things look good from the physician perspective and Johnny and Dr. A spent more time talking about hunting than cancer. I think that is good! Johnny still doesn't like the fact that he is so cold intolerant these days. This, too, shall pass, we were told.

Accessing the port and lab draws were relatively uneventful. Hooking up the chemo made Johnny pretty "urpy" today from the smell of the alcohol wipes they use. We will try to remember to cover his nose with a nice smelling cloth next time. It was the closest he has been to getting sick during chemo.

Then, he slept the rest of the time.

OK, well he did wake up for lunch that Sonya brought us from Panera . . . YUM! Sonya, it was so nice to finally get to spend time with you! Lunch was great, but the time with you was even better. Love you.

Usually when we get home, Johnny is up until early evening - like 6-ish. Today he kept his eyes closed for the whole ride home (and I took the scenic route along Riverside Avenue to look at the pretty colors, too). When we got home he headed straight to bed with a little tummy ache and body aches. He attributes the body aches to moving tree stands yesterday, but was willling to take some medicine to help knock out the pain. He also took some additional nausea meds.

I really hope that this is just a fluke and he will continue with the normal trend he has established with chemo. Who knows. One thing we have figured out is that anything can happen, even when you think you have it figured out. Hopefully he will have a restful night and just sleep through the bad part.

On the bright side -- he smells baby-fresh again! You can't beat that!

There are some other side effects that he has been experiencing. I've talked about the cold intolerance before, and that continues like gang-busters. I even bought him this neoprene head cover with a little nose/beak cover thingy so that only his eyes are exposed. It looks like something a deep sea diver would wear. When he has been out in the cold recently, he feels little nerves in his face, especially his nose. His hands get cold easier, too.

Another thing that has happened is the skin on the palms of his hands has darkened considerably, along with the fortune-teller lines. They are really dark. I'll bet if he actually went to a fortune teller, she would freak out from the color of the lines! It might be fun to do, actually.

Nothing really earth shattering, but interesting nonetheless.

I'm just ready to be done with all of this chemo crap, get on with the surgery and start the final healing process. Hopefully by his birthday next summer we will have the "all clear". I can tell you when that happens, we are going to have one heck of a party! Seriously.

OK, now on a totally different subject matter altogether: Have you ever heard of FarmVille on Facebook? Jake needed a new "neighbor" so he asked me to start a farm on this little game on FB. Before you start making fun of me (I'm already a level 7 after only 2 days!) you need to know that there are a boatload of people playing this. I am talking grown, professional adults. Not just kids! I am completely addicted and was upset today because Hematology/Oncology's Wi-Fi didn't work so I couldn't harvest my soybeans. I know! I was telling Sonya about it and one of the hem/onc nurses came over and said, "Are you talking about FarmVille?" She is a level 26! All the really cool kids are playing it. So, if you get on FB and start a farm, please send me a gift. I promise I will send you something in return. Visit my farm, and you will notice I have a plan to surround it with fruit trees.

And I don't want any messages sent to me telling me that I have lost my mind. I won't answer you anyway because I will be busy farming! Have to go now, my strawberries need to be harvested and the cow milked.

Thursday at the Brawley's

2009-10-22T19:54:00.002-04:00

My, how fast the "good" weeks fly by!

Soccer season and football season are both coming to a close and our schedule will finally calm down for a while. Johnny's last football game was tonight (a scrimmage and pizza party to follow) and I know it is bitter-sweet for him. He has really enjoyed being involved with the boys, even in his limited capacity. He has greatly enjoyed and appreciated working with Jim Craig. Jim is an amazing coach, and it is really reflected in the 7th grade record this year. I think the 7th graders are well-prepared and will go in to 8th grade football with a lot of newly acquired confidence because of Coach Craig. Thanks again, Jim.

Jake had a soccer game tonight in the rain. Where and when did I sign up for this? I actually missed most of the first half of the game because I fell asleep in my car! This is the second time that it has happened, too. See, what happens is: Jake has to be at the field 30 minutes prior to game time to warm up. I just sit in the car (when the weather is yucky) and wait til game time. Then I truck on out to the field with my chair, blanket, and umbrella to enjoy a rousing match-up. This evening I was cozy in my little Jetta with the seat warmers toasting my buns to golden brown perfection (Oh! Perfection? I wish!) when suddenly I awoke with a start to discover that it was 6:15! The game was supposed to start at 6:00, but due to the weather they started 10 minutes early. I missed 25 minutes of a 30 minute half. My dad was at the game and was just about to come back to my car to wake me up. He was at the game last Saturday when I fell asleep, but I actually woke up when the game started, not half way through. I better not do that again, or I'll end up missing the entire game. Geez.

We are keeping close tabs on the whole H1N1 flu. I am really paranoid about Johnny getting sick. He is actually not even considered immune compromised right now because his lab values are all in the "normal" range. But even with normal labs, I don't want him subjected to anything that could affect him in a bad way. Know what I mean?

I know several people that are down with all manner of the flu, including H1N1. Just take care of yourselves out there. If you are sick, stay home and rest, drink lots of fluids, and take two aspirin and call me in the morning. Well, maybe not me per se, but you get what I'm talking about. Grant and Bryanna report that it is sweeping through Central Michigan University now. That would be awful to be away from home and really sick.

Looking forward to a basically quiet weekend. I am on call (boo!) but there is only a soccer game and a birthday party on our to-do list.

Please continue your prayers. We certainly know they work and don't want anyone to quit on us just yet.

If you don't mind me asking. . . a friend of mine from all the way back to elementary school (Marci) just found out that her sister has lung/brain cancer. I don't know any of the details, but I do know that this is a family who has just had their world rocked and could use all the prayers we can muster for them. When I found out, I got that really sick and sad feeling all over again remembering those first few days after diagnosis. It is more overwhelming than most can imagine.

Marci, please know that there are lots of people out there praying for you. People that might not even know you or Tracey; but prayers are strong and they work. Please call if there is anything I can help you with or if you have questions about doctors, etc. Praying for you all.

I really like Normal

2009-10-18T18:57:00.002-04:00

This whole week was spent riding the wave of the good news we received from Johnny's scans. It is much easier to think about 5 more cycles ahead of us when we know the shiz is working!

I don't have to tell you that the fish fry was this past Friday, because practically every person I know was there! We set records for dinners served at a Brawley fish fry! According to MIL Ginger, 350 people is a good turn out for one of their frys. We had a whopping 860 dinners served! And yes, we ran out of fish. The fish held out until about 7:30, but not too many people had to be turned away.

I don't have the complete list of names for all of the raffle prize winners, but I will work on getting that so that I can post them here.

After the fish fry Johnny and I went to the Riverfront Cafe and met up with a very eclectic group of friends from high school. I think there were about 14 of us in all, and it was so much fun to catch up with these guys. We finally got home at about 11:30 after a VERY long day.

Saturday night was spent spooking a bunch of teenagers at a hayride/Halloween party at the Montgomery's. (Thanks for having us, Jeff and Kellie!!!) Johnny had a rough time with the cold again, and we only lasted about 2 1/2 hours. His face and hands get really numb, even if it isn't all that cold. Just part of the neurologic effects of the chemo.

So, we got home Saturday night at about 11:00. I couldn't even wait for up for Quinn to get home (thanks, Rudlaffs!) before I fell asleep. Can you even believe that I slept for 12 straight hours?!!? Crazy! I haven't done that in a very long time. You would think that I accomplished great things with all that sleep, but nope. Hardly did a thing all day!

Johnny and Quinn are out hunting. Quinn has a monster buck coming in to his stand every night at about 7:25, so he is still out in the woods. Johnny is attempting to hunt (he doesn't know if the cold will make him crazy or not) and is in Dowagiac at his least property.

Like most hunting nights, Jake and I are holding down the fort waiting for the great hunters to return. I have a pot of potato soup on the stove to warm them up when they come in. Hopefully, they will both have their bucks and we will start to fill the freezer.

Pretty darn normal around here tonight. Oh man, do I like normal.

It Is All Good

2009-10-12T20:55:00.004-04:00

For those of you who participated in the golf outing and didn't look inside your bag of goodies, I still wanted to express my gratitude. It was an amazing event and we were just beside ourselves with the turnout. I hope everyone had as much fun as Johnny and I did!

This is the "thank you" note that was included in the bag and it pertains to everyone involved:

Dear Friends,

To begin by only saying thank you just doesn’t seem like enough.

Our world came to a screeching halt on July 8, 2009. We had never experienced anything so devastating in our 21 years of marriage. We felt scared, hopeless, and lost. We had no idea what the future would hold. One thing we knew for certain from the minute we received Johnny’s diagnosis: We were not alone.

Immediately after the dreaded diagnosis, our friends were there to provide for us. Food, comfort, Kleenex, wine, friends to laugh with, and shoulders to cry on have yet to be in short supply.

Johnny’s philosophy has always been, “Surround Yourself with Good People.” This summer and fall have driven home the power of his philosophy. Good people have provided for us in so many ways. To be on the receiving end of a fundraiser is a humbling and overwhelming experience. One of our dearest friends told us, “Allow people the blessing of helping.” The blessings have been all ours, to be sure.

The magnitude of this fundraiser and others that are planned have provided us with comfort in the knowledge that no matter what, we are cared for. I will be able to stay with Johnny whenever necessary without worrying about how everything will be taken care of financially. The comfort this provides cannot be described.

To Larry Larson, Brian Tumbleson, Jeff Altergott: Heartfelt thanks in abundance. You guys are amazing. You will forever be held close to our hearts. Huge thanks also to Dave Schiele, Jeff and Maria Brawley for rounding up so many sponsors and raffle prizes. To our Express-1 family, your support has allowed Johnny to keep his “good” weeks normal and has made the “bad” weeks tolerable. To Stevie and Lori Wells, thanks for everything you have done to make this day possible. To all the volunteers, prize donors, hole sponsors, golfers, friends, family and Toad fans, I wish I could create a word that means, “The Biggest Thanks Ever,” but since it is really all we have -- Thank You.

This journey could have been lonely and long without you. Thanks for sticking by us.

From the heart of our bottoms (where this all got started) and the bottom of our hearts, we thank you.

Most sincerely,

Johnny “Toad” and Pam
Quinn and Jake

And now for today's news:

Today was Cycle #7. We started like every other treatment with a visit to Dr. Ansari's office. He gave us the results of the PET/CT scans that were performed last Thursday. Are you ready for this?

Drum roll, please . . . . .

LIVER:

First scan - Multiple lesions in the liver, largest lesion straddles both lobes and is 3.5 X 3.0 cm in diameter. Consistent with metastatic disease.

This scan - Only TWO lesions remain in the liver, all others have RESOLVED! The largest lesion measures 1.8 x 1.5 cm in diameter. Markedly improved.

LYMPH NODES:

First scan - Multiple lymph nodes involved in the para-aortic area. Consistent with metastatic lymphadenopathy.

This scan - Metastatic disease to the left para-aortic lymph nodes has RESOLVED!

COLON:

First scan - Primary adenocarcinoma of the rectosigmoid junction identified. This tumor measured approximately 15 cm. with considerable circumferential wall thickening.

This scan - Marked improvement in the size of the primary tumor. Abnormal wall thickening shows marked improvement.

For those of you who are still scratching your head and going, "Huh?" What that all means is Johnny's cancer is running away with it's tail tucked between its legs. EVERYTHING is better. No, it isn't completely gone, but we didn't expect it to be. He still has 5 more cycles after today, and with what has happened already I don't think it is crazy to think that we will see additional improvement before surgery.

Surgery is still on. As of right now we don't know where or with whom, but for the very first time he actually mentioned that it could be possible to have surgery right here in South Bend. I voiced my concern that we are still dealing with the liver and we still don't have a liver specialist in South Bend. I want it done right, not for convenience. Dr. Ansari said that he agreed and that once we are finished with round 12 of chemo, he will order an additional set of scans to include an MRI. When he has the results of those scans we will sit down and figure out our best options. He said that he will choose for us what he would choose for himself. He also assured me that whatever we decide, we will all be happy with the decision. I liked that, and left his office content.

Oh, but wait. . . there is still more good news! After our visit with Dr. Ansari we went back to the infusion center where they had to draw labs and access his port. (Port access has gone very well the last 3 times, thankyouverymuch!) They always bring us a copy of the labs, because, yeah I am "one of those" wives! Anywho, when Mary brought us the the last page of labs, she was all smiles and wanted to play a guessing game for his CEA level. (Reminder: here are his previous CEA levels starting on July 10th -- 60.4, 34.1, 13.8,and 7.9) Can YOU guess? Here is a hint: Cut it in half again! Today's CEA level was 3.7. THREE POINT FRICKIN' SEVEN!!! According to the lab sheet, normal is 3.1. (I know, Ansari kept telling us FIVE, but evidently he didn't think it would drop so low!!)

Dr. Ansari used the term Partial Remission today. Partial is good; total is better. Total is our goal.

We are OVERJOYED to think that all the crap Johnny has had to deal with since July 8th has been worth it. It is a much different feeling to have them running in the toxic chemicals when you know they are working! He is very upbeat and you can see the relief written all over his face. I feel like I am breathing again for the first time in a very long time.

Please don't forget to pray for him just because things are going well. We know better than to assume everything is going to be just fine with no possibility of bumps in the road. There is still a long way to go, but we are confident that slow and steady will win this race.

I've posted late tonight, and now I am super tired. I need to go give Johnny a good sniffing and then fall off to sleep myself. Thanks for your continued support and interest in the blog. It is my therapy and a good stress outlet for me; and as most of you know I am quite open in sharing personal details of our daily life. I'm just so thankful that I have a captive audience! What will we talk about when Johnny is all better? Hmmmmm. . .

Praying tonight for Megan McKeel. Sheryl and Rick, if you need anything you know where we are!

Oh, and Check This Out! Thanks again, Jessica!

Oh, one more thing: Read Mitch Albom's newest book, Have a Little Faith. It is amazing.

Wait, wait, one more thing: Fish Fry this Friday, October 16th from noon until 8 pm at the Eagles Lodge by the Riverfront Cafe and Ampitheatre. Seriously, I have never seen so much fish and cole slaw in my life. Come eat it or the Brawley's are going to have to eat fish for a month of Sundays!

Mesenteric Adenitis and Wicked Good Slippers

2009-10-07T21:32:00.004-04:00

When you come to the end of your rope, you simply tie a knot and hang on, right?

This morning, Quinn woke with an excruciating stomach ache right in the middle of his belly. His cheeks were red, but he didn't feel feverish (thermometer is broke, currently on Wal-Mart list). He said, "Mom, my stomach is killing me." I asked him if he was going to make it to school, to which he replied tearfully, "I can't."

Let me say that Quinn isn't a faker. He never tries to get out of going to school and if he tells me that he is in too much pain or too sick to go, then he really is. (Jake is a completely different story!!!) He said that he wanted to go to Grandma Gerry's house, so Johnny took him there on his way to work. I took Jake to school and headed to work myself.

After a couple hours at work, I called my mom's to check on Quinn. He said that his stomach still hurt bad, but the pain had moved from his belly button to three inches to the right. Alarm bells rang out . . . classic symptoms of appendicitis. I asked him if he felt the pain was bad enough to go to the doctor's office, to which he replied, "Yes." Crap-o-la.

Johnny picked him up and brought him to the doctor's office. I was swamped at work and didn't want to leave since I have had so much time off for Johnny, and this week with my own sinus infection. I left it in Johnny's hands, since he is definitely the more sane of the two of us these days. When I didn't hear back from him after 45 minutes, I thought it was the whole, "No news is good news" scenario.

I called his cell phone.

"Everything OK?" I asked.

Pause. "Well, the doctor thinks it is his appendix. Pam? Pam? Are you OK?"

I basically imploded right there in the control room at work. (Thanks, Boobie, for holding me up!) I could only think of them cutting open my baby and all the terrible things that people in the medical field can come up with when the shit hits their own fan.

Not. One. More. Thing. I. Can't. Handle. One. More. Thing.

So I caught up with them as Quinn was getting ready for his CT. He drank the yucky stuff and we waited. After an hour and a half (!!) they took him back and did his scan. Quinn even managed to make it without passing out from the IV and blood draw, which is HUGE for him. He has had several bad, bad, bad experiences with IVs and labs. Poor baby. So we were finished and waited while they called in the report to the doctor.

They sent us out only with the knowledge that it wasn't his appendix, THANK GOD. Dr. Sisk (not our normal pediatrician -- we are Dan Brier fans!) finally did call us around 8:30 this evening and told us that the lymph nodes in his abdomen are very inflamed, probably from a virus. She called it Mesenteric Adenitis. She said that he will probably have a pretty bad tummy ache for a couple days, and it should resolve by the weekend. My sister, Angie, actually had this a couple times and said that it is terribly painful. He just needs to "lay low". He is very relieved, too, I can tell.

So, it is now almost 10 p.m. and I am finally able to think (relatively) straight.

Earlier I took Jake to soccer practice and had to run a couple errands, one of which included a stop at Wal-Mart. (No, I didn't get a thermometer. I left the list at home!) I am afraid to admit that in my fragile mental state, I went to Wal-Mart in my slippers. I just know I am going to end up as one of those pictures in the "People of Wal-Mart" emails that circulate around. I hope they blur out my face.

OK, but in my slipper's defense, they are really practically shoes. They are the Wicked Good Scuffs from L.L. Bean. Seriously good slippers.

My previous pair lasted for 15 years, I had them longer than both of my kids! I got them for Christmas one year and dubbed them the best darn slippers EVER! But like all good things, their time came to an end and I finally had to toss them. They were completely ripped out and had holes through the bottom sole; they could no longer stand repairs. I told Johnny that it was the only thing I wanted for my birthday . . . Wicked Good Scuffs from L.L. Bean. And that is exactly what I got.

I wonder, though. Will these last for 15 years? They are certainly well built and comfy. If I have these for 15 years, I may actually have GRAND KIDS by the time they give out. My boys will both be done with college. Johnny and I will be retired and living part time in the Bahamas. Griffin will be driving a car and in high school. Grant and Bryanna, Andrew, Josh and Zack will be contributing to 401Ks, and will probably be parents themselves. The rest of the nieces and nephews will be well into their secondary educations. John and Ginger and my Mom and Dad will be older, and enjoying their growing families immensely. Hopefully, all of us will be happy and healthy.

I had no idea that these slippers came with so many hopes and dreams built into them. Maybe that is why I love them so much!

AND! To Jim Craig and the 7th grade football team that annihilated Penn's Discovery Middle School team: YOU GUYS ROCK! The future of Niles Football is looking really good! Congratulations, and thanks again, Jim. You know for what.

Brush with Greatness

2009-10-06T20:51:00.007-04:00

OK, Seriously . . . did you see the Vikings/Packers game? Holy Wah! Jared Allen and Brett Favre were ON FIRE!

Do you remember when Muhammad and Lonnie Ali gifted us with tickets to see Elton John and Billy Joel at Wrigley Field? If not, go here.

Well, there was this Man Mountain in front of us with his friends, just singing and dancing along with Elton and Billy and completely enjoying himself. The friends were having fun, too. Anyway, Johnny, Molly, Jim and I were talking about this guy on the way home saying, "OK, who was that guy? We knew he had to be a professional athlete, but unfortunately we couldn't think of who is was immediately.

About a day later, Jimmy calls and tells me to look up "Jared Allen" on Google. Oh, my gosh! That was the Man Mountain that was in front of us at the concert!!! No wonder he looked familiar. Molly took the picture above at the concert, because we just knew we knew him.

I just wish that we would have had him sign our ticket stubs, or my boobs, or something tangible while he was right there in front of us! Dang, that was a missed opportunity . . .

I just thought I would deviate from the world of cancer for a few minutes and tell you of this brush with greatness. :O)

And, Jared, if you are reading this: You are invited to hunt and/or fish with us at our cabin in the Upper Penninsula anytime you want. Oh, and keep the mullet . . . it's hot.

GOLF OUTING IS FULL!

2009-10-06T13:23:00.002-04:00

Remember when I told you all to get your golf registrations in early? Well, I wasn't just whistling Dixie! As of 12:30 today we have confirmed 60 teams for The Fighting Toad Golf Outing!

If by some chance you thought you should wait to sign up, please give Larry Larson a call (and ONLY Larry Larson, he is the only person with the Master List -- 269-695-4966). We are trying to come up with arrangements that will allow as many extra teams as possible to play. If all else fails, we will start a waiting list.

Can I just say -- WOW!

If you'd like to stop out for a great party and not golf, we will be at Hampshire Country Club, 29592 Pokagon Hwy, Dowagiac from early until late afternoon. Plenty of raffle prizes and good food and beer. We'd love to see you there!

Let the Good Week Begin

2009-10-05T20:17:00.001-04:00

Again, we start the new week -- the “good” week. We have to get a lot accomplished during the good week, to make up for the lost hours/days of the “bad” week.

This week is no exception. There is definitely a lot to get done. We are in the final stages of planning the golf outing, and it is coming together very nicely. At this writing, there are 58 teams signed up. If you are still interested, please give Larry Larson a call. We want you all to be there, if not just for the golf, then for the raffle prizes! Because -- and I am not kidding you folks -- there are some flippin’ amazing prizes! I can’t even begin to list them all, so I won’t even try. Just come out to Hampshire Country Club on Saturday and check them all out, buy your raffle tickets and WIN!

Thursday morning at 8:30 Johnny will have his PET/CT scans. We are looking forward to this, and hopefully the good news that it will provide. I have to say, there is a little part of me that is nervous that there is something else lurking around inside that cute Toad body.

We will see Dr. Ansari again next Monday and he will give us the results and the game plan. We assume that the game plan is to continue chemo for another 6 cycles and then plan surgery. Believe me, if there are any changes to the plan we will let you know.

Not much else to report for now, so I will leave you all with happy thoughts of normal PET scans and CTs. Wouldn’t that be nice? I know it is what I am praying for tonight.

Awake and Cold

2009-10-01T21:02:00.004-04:00

Evidently it takes until Thursday to wake up when they give you the 5-FU Mega Dose. Johnny slept like a log from Monday night, all the way through Tuesday and well into Wednesday. He did wake up momentarily to ride with me to take Jake to soccer practice, and then had to come home and take a nap. Exhausting! Seriously, he was awake maybe 45 minutes before he had to head back to bed.

But, the good news is it is now Thursday, and he has been up for the majority of the day. He did take about a 2-hour nap during the mid part of the day, but has been (relatively) productive!

Remember he has that cold sensitivity thing, right? Tonight Jake had a soccer game in the rain which made it feel like 32 degrees, even though it was 52. Johnny arrived in shorts and a sweatshirt (even though I told him that he was going to freeze). He never even made it to the bleachers. "I have to go home and get more clothes." Hmmm. Go figure. When he made it back to the game, he was in full hunting gear, including stocking cap. I'm just glad he didn't wear anything that was hunter's orange! He made it through the game but was a frozen Popsicle by the time we got back to the car. It seems that it isn't only cold drinks and taking things from the freezer that affects the sensitivity. Just being in the cold air does the same thing . . . only to his entire body! He said that if he touched the tip of his nose, he could feel a nerve sensation that wrapped around his nose, through his cheek and up to his forehead. He traced the path with his finger. Hunting season doesn't seem too promising, does it?

Just before Jake's game we had a meeting with the dynamos that are putting together The Fighting Toad Golf Outing. Wow, these guys are good! It is very well planned and thought through right down to the volunteers for each specific event. I'm telling you, these guys could consider Golf Outing Organization as a new career path! Brian and Larry let us know that there are approximately 48 teams signed up (we can only accept 12 more teams! Hurry!). We have an amazing list of Hole Sponsors (can still accept more of these, too) and a list of prizes that is completely overwhelming.

There are two raffles in conjunction with the Golf Outing and the Brawley Family Fish Fry. The first is for a multitude of prizes that will be drawn at the Golf Outing itself. These tickets are $1 each/6 for $5 / or 25 for $20. The prizes for this raffle are quite varied and include things such as sporting events tickets, hunting and fishing gear, oil changes, restaurant certificates, hair and salon products and services, sports memorabilia, golf packages, and soooooo much more. These tickets are available in advance and will be by random drawing at the golf outing. Please contact me, Johnny, Larry Larson (contact info on golf registration form), or any member of the Brawley/DeCraene family.

The second raffle is for six specific prizes that you can specifically designate your ticket to go towards. These tickets are $5 each or 6 for $20. The prizes available for this raffle are:

Seven Day Ohio Bow Hunt

Muhammad Ali Signed Memorabilia

Seven Piece Pampered Chef Cooking Set

Lake Michigan Fishing Charter for Four

Lake Erie Fishing Charter for Four

Three Day Spring Ohio Turkey Hunt

These tickets are also available in advance and will be by specified drawing. When purchasing a ticket, you fill out your name and phone number and circle the number that corresponds to the prize you would like to win. (Example: I want to win the Pampered Chef set, so I will circle the number 3 on the stub.) These prizes will be drawn at the Brawley Family Fish Fry. Tickets will be available for this raffle at the Golf Outing as well.

OK, so those are the raffles in a nutshell. In addition to that (I KNOW! It is crazy!!!) There will be a couple silent auctions at the fish fry. One is for a one week cabin rental in God's Country, aka John and Ginger's Up North Homestead. (Dates for this are negotiable and by availability) This would be great for snowmobilers, ice fishing, a quiet getaway without kids. The other silent auction is for a Remington 300 mag rifle. No explanations necessary with that one! These silent auction items (and possibly a couple more) will be auctioned off at the Brawley Family Fish Fry, so make sure to come early and bid often.

Side note: When you pronounce the word OFTEN, do you say OFFEN or OF-TEN. Is your "T" silent or enunciated? Just wondering . . . I say the "T".

Well, the Toad is already in bed and I need to head there myself. Today was a busy day, and there is a busy weekend heading this way. Not to mention all the preparations for the BIG GOLF OUTING on the 10th!

Lastly, if you are considering volunteering for the Brawley Family Fish Fry, please contact Crazy MIL (Ginger) at 269-683-9001. She will assign a time and a task for you.

Lets recap: Tired and cold Toad, Golf Outing approaching, raffle tickets available, Fish fry volunteers contact Ginger. Oh, and Never.Quit.Praying!!!

Tuesday again

2009-09-29T20:07:00.003-04:00

For not knowing what to expect from the increased dose of 5-FU, I think Johnny has managed quite nicely, thank you very much.

He was pretty nauseated last night and was quite restless until about 2 a.m. I think all the bedtime meds finally kicked in and he then got some peaceful sleep. The 5-FU pump grinding away all night drove me nuts . . . I swear they gave us the loudest one they have!

The remainder of the day Johnny has spent in bed, smelling like a baby and sleeping away. I definitely think he is sleepier this time than before. Fortunately, he hasn't needed extra medicine for nausea so that is a plus.

Basically today in a nutshell goes something like this: wake up, take the boys to school, come home, smell Johnny, do some laundry, give Johnny drugs, more laundry, clean, smell Johnny . . . blah, blah, blah. It is really boring when Johnny is sleeping, but I'll take boring knowing that he is doing OK.

OK, so I know this has been the most boring post ever but I am happy that there isn't much to report. I will be going to bed very early tonight and am considering ear plugs so I don't hear the pump.

Please say your prayers tonight and include us. We believe in MIRACLES of all shapes and sizes and we know that prayers can make that happen.

Happy Birthday, Angel Ava. We know you are the sweetest of all of the littlest angels in heaven. I know you are well loved in heaven and on earth you are always in our hearts.

Birthday Wishes

2009-09-28T17:01:00.002-04:00

Thanks to everyone for sending me the great birthday wishes. It is great to be 42 -- again!

There are so many things that I would normally ask for on my birthday, you know the normal stuff like a robin's egg blue box from Tiffany's or a day at the spa or (another) trip to someplace warm and tropical. . . but that was before.

It is amazing how "things" just don't mean as much anymore (WAIT! If you have already sent the Tiffany box, I'll accept it!). This morning my first thought wasn't that it was my birthday. It was about Johnny's cancer and his increased dosage for chemo today. My next thought was what to do with Jake since he needed to stay home from school with a tummy bug. My next thought was getting Quinn to school on time and with a nice warm breakfast in his belly. It wasn't until I was drying my hair that I thought, "Oh, wait. . . it's the 28th, isn't it?" Just another day, really.

I did sent up a little prayer to God this morning when I realized that it was my b-day and asked that if I could be so bold, I would like to know that things are going to be OK. I wasn't really asking for a thunderbolt or an alien spacecraft to spell it out in the sky, just maybe something subtle, you know. I kept an eye peeled and my ears perked for the "sign".

When we got to Dr. Ansari's he walked in the exam room looking dapper as always and the first words out of his mouth were, "The CEA is down to 7.9." SEVEN POINT NINE. Boo-Yah! I took that as my sign. Thanks, God. That was every birthday present for the rest of my life wrapped up in one sentence. I'll take it as fair trade.

Dr. Ansari was impressed with the number and reminded us that "normal" is five. Five, as in two-point-nine less than where we stand right now.

The decision was made to boost the chemo dose anyway, since the lab values indicated that it was safe to do so. I said it before, and I'll say it again: Cancer doesn't know who it is dealing with! You cannot mess with the Fighting Toad! I will say, though, that Johnny's isn't feeling well right now, and with this increased dosage I anticipate a rough night for him. Please pray for this to not be the case, but we will tackle what ever this nasty 5-FU hands us.

While over the course of the last six chemo cycles, we have met some of the nicest people. Chemo Mondays are dreaded (even by Johnny, he admitted yesterday) but seeing the Monday "regulars" makes the time spent in the lounger go by quickly. Two ladies, May and Carol, have become quick friends and we enjoy chatting the time away with them. There are others we have met and continue to pray for as well. It is a special community in that infusion center. People share fears and concerns, hopes and helpful hints. A very unique bond forms, and forms quickly. I know it has changed us, as I'm sure it has the others that spend hours infusing away.

So, for the rest of my birthday I will be thankful for the gift of a low CEA level for my Johnny. I also look forward to turning 43 and celebrating life without cancer with the love of my life and the boys. Now that is a gift that will keep on giving!

Holy Wah! Escanaba was GREAT, eh!

2009-09-26T18:57:00.004-04:00

For those of you able to attend the Escanaba in Da Moonlight performance on Thursday night: Thank you! For those unable to attend, I have to tell you, you missed an incredible night filled with fantastic entertainment. I hate to admit, but I wasn't quite expecting the quality of performance that was presented. By intermission my cheeks hurt from laughing so hard. It felt so good to be able to laugh out loud next to Johnny and surrounded by so many of our friends. They even challenged Johnny to chug some of their leftover "Mooseball Milkshake" after the performance. You'll have to ask Johnny about the "protein chunks" some time.

And to Stephanie Stowe Salisbury: Thanks from the heart of our bottoms and the bottoms of our hearts. This was just exactly what we needed at just the right time. You and all of the actors/actress created something special on stage that we will not soon forget. "Holy Wah!"

Next in line for The Fighting Toad event calendar is the golf outing, Saturday, October 10th. I may start sounding like a broken record here, but WOW are there a lot of prizes. Seriously, even if you don't golf you should come out to Hampshire Country Club just for the raffle. I'm not sure of the total, but I know for sure there are 6 or 7 prizes with values over $500!

And if you do golf you really need to get your registration sent in soon (or at least call to reserve your spot). As of Thursday there were already 45 teams signed up (!) and we have been told that the course only has enough golf carts to accommodate 60 teams. So, quick like a bunny, send in your registration.

I would love to post a list of all the prizes being offered, but I don't want to ruin the surprise. I guess you'll just have to join us that day to find out! It is still not too late to offer your volunteer services. Please call Larry Larson or email him (see info on the registration form) if you are interested in helping on October 10th.

The Brawley Family Fish Fry is also fast approaching. I have had so many friends from out of town call to let us know they will be joining us. I can't tell you how excited that makes me!

The BFFF will be at the Eagle's Lodge in downtown Niles (across from the Riverfront Cafe) from 12 noon on Friday, October 16th, until 8 pm. We had to extend the hours due to expected high numbers of people. Evidently, Johnny Brawley knows a lot of people around here that like to eat fish! We are looking for volunteers for this event as well. If you are willing to help out, please call my wonderful crazy MIL, Ginger, and she will assign you a task and a time. Please reach her by calling 269-683-9001. There will be additional prizes raffled off at this event as well.

I'm going to need a vacation when all of these events are finished! We are really being kept busy by all of this stuff! But it is a happy kind of busy, so we really don't mind.

Monday is a big day. Johnny is a bit anxious about what the new dose of chemo will do to him and how his body will respond. I just hope the Emend will still hold the nausea/vomiting in check for him. Just in case it doesn't, I've been reading up on some other options (meds) for nausea control. There are several tricks still left for us to try, and I am not afraid to call the office and ask for more help if Johnny needs it.

I am just happy that after treatment on Monday we will be half way through with chemo and should start to look for surgeons (I would think, anyway). I think it is kinda crappy that my birthday (WOOT!) has to be spent worrying about Johnny's new chemo dose, but I just feel like this will entitle me to a nice warm tropical birthday celebration next year when Johnny has officially kicked the booty of this nastiness we call cancer.

Side note about my birthday: On Monday I will be 42. Funny thing is, I thought I was going to be 43. At some point during this past year, I started saying that I was 42 and evidently I believed myself enough to confuse the be-jeebies out of me when my birthday started approaching. I said something about being 43 not too long ago to Johnny, and he said, "I'm 43, you have to be 42." Hey, he's right! What a pleasant surprise, I get to be 42 all over again!

I hope that because I haven't been preaching about prayer that nobody has been taking a break from it. If you have, that's OK but please start up again. I want Monday to be as smooth as possible for Johnny and I would love it if the nausea and vomiting don't become an issue with the new dosage.

Thanks for keeping our whole family in your prayers. We don't take it lightly, believe me. Prayer is some powerful stuff, people, and we want to put it to good use on Johnny. Pray along with me, will you?

Some Thoughts on HOPE

2009-09-23T21:10:00.002-04:00

Hope has the power to fill our lives with happiness.
Hope sustains us through despair.
We learn to cultivate hope the same way we learn to walk: one step at a time.
Hope teaches that there is reason to rejoice even when all seems dark around us.
There is never anything false about hope.

Busy, busy, busy

2009-09-22T21:39:00.007-04:00

There you go, Uncle Ricky . . . pictures of Quinn's bear just like I promised! :O}

It is crazy how busy a family can be once school starts up, isn't it? Today was a divide and conquer kind of day.

My mom and dad picked the boys up from school, brought them home so that Jake could get his soccer uniform and gear, gave them a snack and then took Quinn to the Jr. High. Johnny's 7th grade football team had a game at Ring Lardner (which they won!) so Quinn and Johnny stayed in town. Then, they took Jake to Dowagiac for his soccer game. In the mean time, I finished up at work (thanks, Dennis for doing the late case! and my bestie, Laurie Lou for covering call for a while!) and drove to Dowagiac to catch up with Jake and the rest of the spectators. Of course, once I got to the stands to watch the game it started raining. Yuck. (Thanks Mom and Dad for all of your help!)

We all finally made it home around 8 p.m. where chaos ensued until snacks were eaten (again), homework finished up, showers taken, teeth brushed, etc and the boys finally got to bed around 9:15. Pretty good for all they had to accomplish.

While they were running helter skelter around the house, I was putting the finishing touches on the raffle tickets for the many, many prizes being offered at the golf outing and fish fry. Seriously, people -- you cannot believe all the prizes. We really know a lot of great people!

Just to whet your appetite here are just some of the prizes: a 7-day Ohio bow hunt, a Lake Michigan charter for four, a Lake Erie charter for four, a 3-day spring Ohio turkey hunt, a cooler full of fresh-frozen seafood from Florida, oil changes, hair cuts, sports memorabilia, golf packages, sporting events tickets, restaurant certificates . . . and the list really goes on and on.

Our excitement is increasing by the day for the golf outing and fish fry. And! It isn't to late for you to join us on Thursday night for the Escanaba in Da Moonlight production. That is sure to be a great time, too! Please contact me if you are still interested in tickets.

So, are you wondering how the Toad is actually doing? Last week chemo was pretty rough on him, and it took him much longer to recover than what he is used to. We know that Monday, Tuesday, and Wednesday of chemo week are rough, and that is where we want it to end. The reality of it is that as his body weakens from the chemo, the recovery will get harder. And it is. Although he tries really hard to get up and go, I can see it in his eyes when he is tired. He gets pale, too, when his body has had enough and needs rest. For instance, our family went to the high school football game last Friday night. Johnny had already had a long day with work and 7th grade football practice. By the middle of the third quarter, he leaned over and told me, "Whenever you're ready." What that really meant was, "I'm ready." When we got home, I didn't like how pale he looked. He took some Compazine and Ativan and headed to bed. I try not to harp on him about doing too much because Dr. Ansari has told Johnny to push as much as he wants. His body really does tell him when he needs to stop. I try to allow that to happen and follow his lead on what he can and can't do. It is so hard, though. I want to protect him from everything: tiredness, nausea, obnoxious people -- and I just can't all the time.

We anxiously await our next session with Dr. Ansari. We will find out the results of the labs which will determine if the amount of chemo is going to increase. We will also be arranging the next set of scans. I think the plan is for another MRI and another PET scan, not sure about a CT. I'm anxious in both a good and bad way for that to happen. With the diagnosis of cancer, I think you are always waiting for something bad to happen, even when nothing has gone wrong. Johnny is as anxious as I am with all of this. He was even thinking about calling the office to find out the results of the labs, but then we decided that we wouldn't know what positive or negative would mean for us, so we decided to let it go until we are parked in front of Dr. Ansari.

It is interesting to experience the life we lead on a daily basis with the ever present cancer chorus playing in the background. It never leaves us, not even for a minute. I have to tell you, truly, it is getting old.

Just Another Normal Day

2009-09-19T20:25:00.004-04:00

We have come to the end of another chemo week and it feels good. This was kind of a tough week for Johnny. On Wednesday he had to go in for the additional blood test and that really whooped him. He came home from that and pretty much slept the rest of the day. When he woke up on Thursday, he did feel much better, but still looked tired to me.

He pushed himself to get up and go on Friday and managed to work for a couple hours, attend football practice and then go to the high school football game that night. I know, I know, he should rest more. . . but the doctor told him to do what he can AND to actually push himself. So, even though I keep saying "rest" he keeps saying, "I don't have to." Fine.

Today was just pretty much one of those "normal" days. It started early with soccer pictures and a soccer game in Edwardsburg for Jake (which they won and Jake had a goal!!) then we split into two teams: one to go set up tree stands and hunting spots and the other to go shopping for jeans and shoes for Jake. No, I didn't go set up the tree stands -- Johnny always picks that one. Incidentally, Jake and I went to Kohl's where we found 5 pair of jeans for him in about 20 minutes. That has to be a new land speed record for blue jeans shopping. Then we headed to Dick's Sporting Goods where we sought out the latest and greatest in Under Armor shoes. Incidentally, why do shoes have to cost so much more just because he now wears adult size? That just makes me angry. BUT! I discovered today that a boy's size 6 1/2 is exactly my size so I got the latest and greatest in Under Armor shoes for boys, too. And ha ha, my shoes were $20 less than Jake's!

Johnny and Quinn worked hard out at Cal Jordan's farm to set up some additional spots for hunting. Johnny's life-long friend (and Cal's son) Jimmy and his son Tyler are coming up for the youth hunting season next weekend and Quinn is serious about getting Tyler a great spot for his first big hunt. They have set out field cameras and scoped out the area very well so that Tyler can be successful for this hunt. I think Quinn and Johnny are just as excited for Tyler to get one as he and Jimmy are. We are really looking forward to seeing them this weekend!

Of course, the activities of the day have worn out the toad (and the Mrs.!) and he is already off to bed for the evening. I am heading there soon myself.

Hope everyone enjoyed this gorgeous day as much as we did!

Wednesday at the Brawley's

2009-09-16T20:44:00.002-04:00

Still quiet on the Brawley Front. Although Johnny wouldn't describe this round as "awful", it hasn't been the best, either. Yesterday was actually better than today, so we don't know if Wednesday will now start being the yucky day or if this is just a fluke.

Johnny had to go in to the infusion center today to have a special lab drawn while he was still on the 5-FU pump so that Dr. Ansari can determine whether or not he will increase the dosage at his next cycle. The trip in the car was a doozy for Johnny. He felt pretty good until they had to leave and once they got moving in the car, it just didn't agree with him. I happen to think it was probably MIL's driving, but who knows. . . Since then he has been pretty much wiped out for the remainder of the day. Still sleeping right now, and will for the rest of the night.

Even though he was queasy, he still managed to eat all three meals today and drink some fluids. Getting fluids down is always the hardest part for Johnny since he can't have anything cold. Imagine that, if you will. You are thirsty -- really thirsty -- and you absolutely cannot have anything cold to drink. It isn't fun because NOTHING satisfies a thirst warm, believe it or not. He is still sticking to warm lemon-lime Gatorade and warm red Kool-aid, and the occasional warm glass of water. He doesn't like the taste of coffee during chemo week (salty) and I even tried tea last night to no avail. Any suggestions on something we should try lukewarm that may satisfy his thirst? We are open to suggestions!

I think he is sick of me sniffing at him because, yeah, still smells like baby. I love that!

Ginger was here all day yesterday and today, and I so appreciate her. (Don't tell me I sound like a broken record; everyone should sing the praises of their mother-in-law!!!) Today was a loooong day for her. She arrived at 7:00 when I leave to take the boys to school and go to work, and stayed until after Jake's soccer game (about 7:30) so that I could be there for him. She worked a 12-hour day and got diddly-squat for pay!

I am starting to freak out a little about the Escanaba tickets, if you want to know the truth. Well, even if you don't want to know the truth. We still have MANY seats left. I would love to get an email from everyone reading this tonight to tell me that they need tickets . . . is that possible? I know that it is tough to get away on a school night, especially with sports and such. If you can work it into your schedule, though, we would so love to see all of our friends and family there. So, as a reminder the production is by the Elkhart Civic Theatre at the Bristol Opera House (just past Elkhart) on Thursday, September 24th. Doors open at 7, play starts at 7:30. Minimum donations are $10 each. If you would like tickets, please call me at home (269-683-0604) or email me (toad4mimi@aol.com) and let me know how many tickets you would like and the amount you would like to donate. It is really that simple.

Well, I am just about out of gas for the night. The boys are in their rooms, probably asleep because they are totally quiet. I still need to run to the store for milk for the morning and then I am coming home and going to bed myself. I wish the weekend started on Thursday!

Hope you are all taking care of yourselves and washing your hands frequently. Remember to sneeze/cough into your elbow, rather than your hands and at any signs of the flu -- STAY HOME! Seriously, people, give yourself and everyone around you a break and isolate yourself for a day or two if you are sick. You are doing everyone a favor, believe me. The Swine Flu is just the flu, but it does require you to take care of yourself. And please, if you have the sniffles wait for a while before you grace our home with your presence. We love you and love your visits, but I need to protect Johnny first and myself and the boys second. I may have to start screening all visitors at the door! Don't make me do it!

Thank you for all the continued notes, cards and calls. Most of all thanks for the prayers. I know they are working. Everytime Dr. Ansari reports on alab value, I can tell that the power of prayer is really at work.

State of the Toad

2009-09-14T20:48:00.006-04:00

The fifth cycle is complete (well, except for the annoying little pump thing still attached). This morning we arrived at the infusion center with me saying my standard prayer for the port to please please please please please please work and what do you know . . . it worked. First time, too. No triple flushing, no special elixirs to clear it all out, no problems at all. I was relieved straight out of the gates. So was Johnny, and it showed in his blood pressure. Usually he is quite nervous about the port thing and his blood pressure shows it by being as high as the 180s. Today, with a cooperating port, his BP was a normal 118/70. Perfect.

We talked to Dr. Ansari about the State of the Toad. Things are looking good from his perspective. He really likes that the CEA is 13.8 and thinks that means the chemo is working well. We asked if it would at all be possible to do only 6 cycles before considering surgery. His reply: "Why would we do that? The chemo is working. Let's let it do its job." So, no such luck getting out of an additional 6 cycles. Actually, instead of getting out of them it looks like we will be kicking it up a notch -- BAM! Johnny goes in on Wednesday to have a special blood test drawn to see what his 5-FU levels are. Depending on the outcome of that, the dosage may possibly (probably) be increased at his next cycle. That may mean more nausea and/or vomiting with the increased dosage, but we really don't know that yet. Pray that it doesn't.

One of the questions that we've had for a while is: How long will we have to wait after the 12th cycle to have surgery. Obviously, we need time for Johnny's body and his blood counts to recover after 24 weeks of chemotherapy before we go cutting things out of him. According to Dr. Ansari, it will be 3-4 week's wait. That will give us time to meet and decide on a surgeon and make all of our travel arrangements. There will be a lot of logistics involved, so I am glad we will have the time off chemo to take care of everything.

Good news to report on his lab values for today! His platelet count actually went up. It was 116 last time and today it was a whopping 124. I think this may have been part of Dr. Ansari's decision to up the dosage, although I don't know it for sure. All of the other relative labs are still in the normal range, which makes me really happy!

While at the infusion center, we ran into an old friend from high school. Really, it isn't the place that you want to run in to old friends. I haven't seen Vince since probably high school, even though he lives locally. He was diagnosed two years ago with lung cancer and has been fighting a really hard battle ever since. The cancer had already spread to the bone by the time they found it, and has now found it's way to his brain. He and his lovely wife, Denise, and their three children are currently building a home here in Niles and hope to be moved in within the next month. He is a walking miracle, and I would like you to help us pray to God to allow him to continue to be that miracle. Like Johnny, his outlook is amazing and so positive. He was one of the only other guys in high school that would hunt/fish as much as Johnny and has had many hunting adventures in his life. . . many of which Johnny envies!

Incidentally, Vince went to the doctor to establish care with a new physician (much like Johnny) and told him of a "sissy cough" (Vince's term) that he had had for a while. He never expected it to be anything. Again, this is a good lesson for all of us. If you have something on your mind pertaining to your health, please don't hesitate to go to the doctor. What is the point of waiting? Seriously, there are two possible outcomes when you go to the doctor. It is either NOTHING, at which point you thank your lucky stars and leave with peace of mind. Or, it is SOMETHING, at which point you thank your lucky starts that you have found it and can now start dealing with it in an appropriate manner. Waiting gets you nothing at all. Sometimes waiting gets you something even worse than nothing at all.

Tonight I am going to bed thankful that we have found Johnny's cancer and are dealing with it appropriately. I hate that he has to go through all of this to get healthy again, but it is so worth it. As long as he can stay strong, I will stay strong with him.

I also go to bed praying for our friend, Vince, and his family; and for strength for our friend Matt, and his family; and for a whole host of new friends that we have met on this trip that we had no intentions of taking. But, since we are taking it, we may as well enjoy renewing old friendships, maintaining current friendships, and embracing the new friendships as they come along.

It is all about the friendships, people. And as James Taylor would say: Just shower the people you love with love, show them the way that you feel. Things are gonna work out fine if you only will. Shower the people you love with love, show them the way you feel. Things are gonna be much better if you only will.

Oh, great. Now I am going to go to bed with that song in my head, too. I probably won't be alone. :O)

Pride in Parenthood

2009-09-10T21:39:00.003-04:00

The Brawley Boys had quite the eventful day today!

Quinn and Johnny, as you know, are in the U.P. bear hunting at John and Ginger's place. I just received The Call . . . Quinn shot a very nice 200 pound black bear! This is his second bear and the biggest of the two. Johnny reports that the shot was perfect and the bear went approximately 10 yards after being shot. I asked Quinn if Johnny cried when he shot the bear (as he is known to do) and he said, "I was pretty proud of him, Mom, he held it together . . . mostly." I know the feeling!

Not to brag or anything (well, OK, to brag) Quinn is an amazing shot. Very rarely do we have to spend any amount of time tracking when he shoots something. I'm really proud of him for that. And I'm glad that he is a confident hunter at such a young age. Johnny has taken Quinn into the woods hunting since Quinn was 3 years old. No kidding. Quinn has always been that "old soul" kind of kid. Even at 3 he could sit still in a hunting blind, eating his Lunchable and drinking his juice box while waiting for a big buck to come in. He has hunted deer, bear, goose, turkey, dove, rabbit . . . you name it! I can totally see him being a DNR officer or something like that when he graduates college.

Jake had a pretty spectacular day today as well. He is playing on two soccer teams right now. One is "just for fun" with his friends in the Edwardsburg fall soccer league. The other team is the middle school team (6th - 8th grades) and they had their season opener tonight. Niles came out strong and beat the Brandywine team 6-2. Jake played a good amount and showed some very nice ball handling ability. He even had an assist for one of our goals. I was really proud of him for that. He was a bit nervous about playing with the "older" kids, but mixed in with them very well. It was a great game to watch and was so much more competitive than what we are used to seeing in the Optimist and Edwardsburg recreational leagues. I'm looking forward to the next game already!

Don't you just love days when you feel overwhelming pride for your kids? Me, too.

I hope you enjoyed your family today.

Finding Normal

2009-09-09T20:47:00.009-04:00

Forgive me, Friends, for I have not written. It has been 6 days since my last post. (I'm not even catholic!)

Everytime I go camping I absolutely love it, but come home so UTTERLY exhausted that I always think I won't do it next year. Horse Hockey, we love it too much. I can't seem to shake the sleepiness of it, though, and it is already Wednesday. I think I need a couple more days off to recover. . .

Johnny managed to go to the campground (Twin Mills) with us on Thursday. I knew he wasn't feeling great yet, but he sucked it up and went anyway. He attempted to help set up camp, but really I prefer him to NOT help. I'm a little control-freakish in that way. I want to set up camp my way and in my time. In all actuality I never let him help set up -- just ask anyone who has ever camped next to us. So, it was all good. . . he rested and I set up camp.

I think he was surprised at his lack of energy until well into the weekend. I have to remind him that he is lowering his blood count with every round of chemo, and it is bound to take longer to recover each time.

We had the most amazing weekend camping with our friends. There were about 20 families from Niles that went to Twin Mills. Before we went, I sent out a message via Facebook to the people that I knew were going and mentioned that we should put together a Niles potluck on Saturday. So, those people told other's that were going, and so on, and so on. . . For the potuluck on Saturday evening, there were three picnic tables heavily laden with food, and 120 people! It was an amazing site. I was really quite proud of our little community gathering and hope that it becomes an annual part of our Labor Day Camping Weekend.

Johnny and Quinn left bright and early this morning to go bear hunting in the U.P. Yes, Quinn went to his first day of school and is now missing three days. There are learning experiences in many places other than the classroom, no? Tomorrow (Thursday) is opening day, and fingers are crossed that a very big (yet non-aggressive toward humans) bear comes in for Quinner to shoot. They have been baiting several places and all of the baits have been hit hard and often, so we know there are plenty of bears up there. I would just like it if one came home to fill our freezer! My dad and another friend, Herb, drove Johnny and Quinn up to the cabin. I know Johnny wasn't up to the drive, so it was really nice that Dad and Herb took them up. I just talked to Johnny a few minutes ago and he said that he basically laid around today after checking the baits. I can tell the drive wore him out.

I would like to thank everyone for providing meals since Johnny's diagnosis. To tell you the truth, we still have leftovers in the freezer and have had full bellies during times when we couldn't even think about preparing our own meals. The time has come, though, to get back to business as usual with our lives -- as much as we can, anyway. I have asked Lori Brawley to not schedule anymore meals for the time being. I may need to ask for help again after Johnny's surgery or if things start to get bad at any point during Johnny's chemo treatments. As I said in one of my earliest posts, the power is back on and we will turn to our friends (our generator) when the time is again right. I can't even figure out the proper words to use to convey our appreciation to all of you (and there have been A LOT of you!). I haven't told the kids yet, and I can guarantee you they aren't going to be happy! I may be calling some of you for recipes. . . new favorites have been discovered! Again, thank you, thank you, thank you. We love you all sincerely.

There are only two weeks left until the Escanaba in Da Moonlight production, and there are still plenty of tickets remaining. Please contact me soon if you are interested in attending. Send me an email (toad4mimi@aol.com) or a message via Facebook.

Golf Outing plans are coming together very nicely. Over 25 teams have already registered, but there is still plenty of room. Get your registration filled out soon!

Thanks for sticking with us on this journey. Our friends are truly what will get us through all of this. We certainly couldn't do it alone.

Mid-Range

2009-09-02T19:38:00.003-04:00

Just like the last few cycles, Tuesday was Sleep-All-Day Day. His nausea remains under control (for the most part), so we are happy about that. He did say that this wasn't as good of a cycle as last time, but still much better than the first one. Mid-range, I'd say.

Wednesday is Remove-the-Pump Day, which is such emancipation for Johnny. He sleeps so fitfully with that thing attached, as do I. It has a little grinding sound every time it gives a morsel of medicine, which is every 45 seconds or so. It isn't loud, but you can definitely hear it. On Monday nights when Johnny is asleep, I use it as my sheep to count to try and fall asleep. Sometimes it works, but more often than not it doesn't.

He has remained pretty sleepy today, too. He has been up long enough to eat, rest on the couch for a bit and then usually heads back to bed within 30 minutes or so. We both know that the best thing for him is rest, so who cares if he has slept for 40 of the last 48 hours!

OK, how is this for a really weird side effect: You know how absolutely fabulous brand new babies smell? That "new baby" smell that just cannot be duplicated . . . not even Johnson & Johnson can bottle it, it is so good. When Johnny has his chemo treatment, he smells like a new baby. I thought it the first couple cycles, but kept it to myself. This time, I asked my mom and my sister to give him a good sniff. Seriously, he smells so good. I keep sniffing his head. Normally I don't think his bald head smells particularly inviting, but during chemo week I keep sniffing him. Especially when he is asleep and I can nuzzle right into that little spot where the neck meets the shoulder. Mmmmm - mmmm! I'd like to invite you all to give him a good sniff next time you are around him. Well, lets just make that during chemo week because the rest of the time, he just smells like regular old Johnny (which can be good/can be bad!).

We are leaving tomorrow to go camping (depending, of course, on Johnny) and will be home early Monday. We look forward to this camping trip for the whole summer! We only camp one weekend a year, and we certainly make it worth our while. It is such a great way to say good-bye to summer and hello to fall. (We are SO ready to say good-bye to summer -- you can't imagine how ready we are! ) It looks like the weather may cooperate with us, which would be the BEST THING EVER! Since we are tent campers, nice weather is especially appreciated. Thanks, God!

While we are gone, we would appreciate continued prayers!

THIRTEEN POINT EIGHT

2009-08-31T21:20:00.004-04:00

Johnny is taking this chemo business all in stride. Last night we completed our list of "pre-chemo" to-do's and tackled Round Four today.

We spoke briefly with Dr. Ansari and just reviewed that things are going according to plan. I gave him two names that a high school friend provided for me from Johns-Hopkins and he told me to hang on to them. He also said that one liver specialist at IU Med Center in Indy did his training at Johns-Hopkins, which lead us to believe that he is leaning towards IU. Perfectly fine with us, but we are still keeping our options open. Whoever is the best match for Johnny will be the one doing his surgery. End of discussion.

Johnny's port continues to plague us with issues. Although I have resolved myself to the fact that it is never going to be a thing of beauty, I don't want it acting up. For the last two chemo infusions, the nurse has had to flush it several times, lay Johnny flat on his back, raise his left arm above his head while he whistles the theme from Love Boat, just to draw labs from the stupid thing. It always flushes just fine, but drawing back on it causes issues. Today they had to take his labs from a vein and not the port. They put something in the port called "Cath Clear" or something to that effect. That is supposed to remove the protein buildup at the end of the catheter. Once she did that, of course, she could draw back on it with no problems. Whew.

I was getting a little agitated and had to walk away while she was attempting to clear the port. My frustration stems from the fact that ISN'T IT ENOUGH THAT HE HAS CANCER AND HAS TO HAVE CHEMO AND HE REALLY DOESN'T NEED ANYTHING ELSE TO GO WRONG, ESPECIALLY FROM THE STUPID PORT THAT THEY PUT IN TO MAKE THINGS EASIER. . . yeah, so I just walked around for a few minutes until the labs were drawn and I could speak in lower case letters again.

The nurse brought us a copy of the labs as they were completed. The so-so news is that his platelets continued to fall. This week they are only 116 (down from 128). We asked how low they have to get before they will not let you have your treatments. The nurse told us at about 10 they will send us for an infusion of platelets and we would have to wait for treatment until the number came up. TEN? Holy moly -- I quit worrying right there. We have quite a ways to go before that. I'll just continue to pray (and ask you to do the same) that they don't fall too much more.

All of his other labs were quite good actually (considering they weren't fasting labs). One of his lab values, however, was SPECTACULAR! Remember a couple weeks ago I talked about the CEA level (cancer lab)? When Johnny was diagnosed it was 60.4. A couple weeks ago they drew it and it was 34.1. Today, just two weeks later, it was . . . . . drum roll, please . . . . . 13.8! That's right!

THIRTEEN POINT EIGHT!

That is less than one-quarter of the original lab value. I think we are moving in the right direction, folks. And now, more than ever, I am soooooo anxious to see what the next scans will look like. Actually, I haven't seen the original pictures. Can you believe it? Me, the x-ray tech-by-trade, hasn't even viewed the images.

To be perfectly honest it is because I was too scared to look. I didn't want to see the evilness that was living inside my Johnny. Now that I know something positive is happening, I want to see the next set first and then the first set after that. That probably sounds really weird, but I want to know where we are before I see what we started with. Coping mechanism? I think so.

Johnny feels relatively good for a dude on chemo. He continues to have the cold sensitivity. That is actually getting worse and lasts the entire time. It finally starts to get a wee bit better over the weekend before he has to start chemo again. At no point is he able to reach in the freezer and pull something out. Too painful for his hands. Today, when he got home from the infusion he had no shoes or socks on and found standing on the wood floors to cold for his feet to tolerate. He couldn't drink the Gatorade that was sitting at room temp, either. But, really, in the grand scheme of things, if that is as bad as it gets, then we are doing pretty well, dontcha think?

He just mentioned that his tummy is getting a little upset right now, so I am going to get him his meds and put him to bed.

Please pray for him. Although things are going well, I still worry like you wouldn't believe. I just really want this cancer crap to be over as quickly as possible.

Prepping, Packing and Planning

2009-08-29T13:13:00.008-04:00

OK, OK, I hear you! It has been 4 days since I last posted, and boy oh boy, you guys let me know!

Like they say, "No news is good news." Right? Right! (Who is "they"? "They" do a lot of talking and get quoted often.)

So, did you all see the article in the Niles Daily Star? Jessica Sieff interviewed Johnny and me this week and put together a very nice article, if I can be so bold as to say that. . . sure I can. If you would like to check it out, go HERE. (Jessica, it was so nice to meet you! Thanks for the great article!)

Once again we come to the weekend before chemo. I spend a good part of the weekend "prepping". I like to have our room really clean: clean sheets, clean blankets, clean pillows, clean bathroom. . . you know, clean. They way I look at it is Johnny will have to spend the next few days in there and it should be as nice as possible for him. I don't want him to have to trip over a pile of dirty clothes if he has to make a quick trip to the little boys room. I also like to have the rest of the house "in order" so that it doesn't drive me nuts while I putter around worrying about Johnny. Most of all, I think I do it so that I don't sit here and mope/dwell on upcoming chemo.

I can't believe this is only the fourth treatment. I told Johnny the other night that I feel like we have been doing this a lot longer than just 6 weeks. It became our new "normal" so quickly. Will that make the next 8 cycles go quickly or more slowly? I have no idea.

Johnny was able to go to all of the football practices this past week. I know he enjoys coaching, and I am so happy that this is even possible for him. What I find funny is that the Brawley Boys (Johnny, Jimmy and Danny -- but not Pooh) are all football coaches for the Niles program. Johnny coaches 7th grade, Jimmy coaches 9th grade, and Danny is the Grand Poobah -- the Varsity Coach. The only problem is: None of them have boys playing football this year. It just goes to show you that they do what they love and love what they do. And, they want the same for their kids. Johnny would never "make" our boys play a sport that they didn't want to play, and this just proves it. Quinn is so completely in to hunting, that football just doesn't fit into his schedule. Jake is a soccer player and is currently involved with two teams. I spend most of my time running around trying to catch up with everyone after work. (Johnny did tell me that I don't have to come to his games to watch him coach, if I don't want to.)

When Johnny used to umpire at Howard Township before we had kids, I would drive out to Pepper Martin Park and watch him. One time a mom in the bleachers asked who I was there to watch, which kid was mine.

"I'm here to watch the ump," was my reply.
"Why?" was hers.
"I think he is so hot," I told her.
"You know he is married, don't you?"
"Maybe he fools around." :O}
"Oh, I don't think so. He is too nice for that."

Finally I fessed up and told her I was the wife. I also thanked her for thinking that Johnny was nice. Comments like that make a girl feel pretty good about her guy.

We are looking forward to camping next weekend. We have been camping over Labor Day weekend for the past 10 years or so. I think we have only missed one time, due to a trip to the Florida Keys. There are between 10-15 families from Niles that go to Twin Mills, and the group morphs from year to year. Quinn and Jake look forward to this trip all year long.

At risk of sounding like a broken record, the schedule of events for Johnny are rapidly approaching. Please mark your calendars and save the dates!

Thursday, September 24: Escanaba in Da Moonlight at the Bristol Opera House. Doors open at 7, production begins at 7:30. Johnny and I are looking forward to spending an evening with 190 or so of our friends. This production is absolutely hilarious. Please join us! Please email me (toad4mimi@aol.com) with the number of tickets you would like and the amount you would like to donate per ticket. Congratulations to AJ and Kelly Gaideski for being the first to request tickets!

Saturday, October 10: The Fighting Toad Golf Outing, Hampshire Country Club, Dowagiac, Michigan. 9:30 shot gun start. This outing is going to be amazing. You won't believe the prizes that are available including cars and trips! We are gathering up registrations now and we look forward to seeing everyone there, as well.

Friday, October 16: The Brawley Family Fish Fry. This is the perennial favorite! John and all of his friends have been very busy fishing their way through the summer to provide for this fish fry (and many others!) Thanks, Barry and Danette, for all the fish you have been providing as well!

Johnny and I consider ourselves the luckiest people to be surrounded by so many that not only want to help, but have taken on such large tasks in order to allow others to help as well. This is very humbling and we want to thank you all for what you have done for us. We may never be able to pay you all back, but please know that our goal is to continue to pay it forward.

Quick Update . . .

2009-08-25T18:23:00.002-04:00

Johnny is his normal self: working, coaching football, driving me crazy. All that is so good. We can just about forget about chemotherapy for our "good" week. Makes facing the next round all that much more tolerable.

Reports on the Golf Outing are FANTASTIC! Larry has assured me that there are confirmed golfers, but still LOTS of openings. Just heard that there is a possibility of TWO cars as prizes for two separate holes-in-one. In case you don't get it on the first try, there is another hole that you can win big on! Not too shabby! Please get your foursome together and send in the registrations. Even if you are a "lone golfer", send in your registration and let it be known that you need a team. We can accomodate that! Volunteers and prize donations can be sent via the same form that is printable from the blog. We have a meeting planned soon, and I'll give updates as they are available.

The stage production of Escanaba in Da Moonlight is also receiving great response! There is still plenty of room available, but ticket sales are picking up quickly! Please don't wait if you are interested in attending. This is a really great opportunity to see a show and spend quality time with 190 of Johnny's closest friends! The ticket sales have to go through Johnny since this is a donated production. Please do not contact the Bristol Opera House or the Elkhart Civic Theatre. Although they are graciously donating this production, they are not handling the ticket sales in any way. Please email me directly (or you can call me, too) and let me know the number of tickets you would like and the amount that you would like to donate per ticket (minimum $10 donation). Checks can be made payable to Johnny Brawley and sent to our home address. Once I know exactly how we will handle ticket distribution, I'll let you all know. If payment has been received, then the tickets will automatically be sent once we receive them.

We are on our way to our 1985 Class Reunion Meeting. If you are from the Niles High School Class of 1985, please join Facebook so you are readily available to receive information. We are so excited about the reunion and want it to be a great success!

Yoopers and the Toad

2009-08-23T18:47:00.005-04:00

Back by popular demand, Elkhart Civic Theatre is proud to open its 2009-2010 Main Stage Season and present Jeff Daniels’ Yooper blockbuster Escanaba In Da Moonlight. This hilarious comedy will have you laughing for weeks to come.

And you want to know something even better? Friends of The Fighting Toad have an EXCLUSIVE opportunity to see this stage performance at the Bristol Opera House on Thursday, September 24th. Seriously, this one performance is being held exclusively for us! "How is this possible?" you may ask.

Well . . . Stephanie Stowe Salisbury is the director of this production. It just so happens that her dad and Johnny's dad are cousins. When she heard about Johnny's diagnosis, she wanted to help. Since she is one of those creative types, she came up with the idea of having an exclusive showing of this production just for Johnny and voila! A great night of fabulous entertainment awaits us all. The Opera House is giving an amazing discount to allow this performance, and the actors and actresses are donating their performances. Is that not the most awesome thing on the planet?

I know you are all just dying to know how you can get tickets and join The Toad himself at this special presentation. Here's how:

Contact me by message here on the blog, Facebook, or regular email (toad4mimi@aol.com) with subject title Escanaba Tickets and let me know how many tickets you would like.
Tickets are a minimum $10 donation. Higher donation denominations will receive "choice" seating. The highest donation will get you seated right next to The Toad (and the Mrs., of course) Front and Center. Donations will be kept completely confidential (if sent via FB message or email). Please include in your message the amount per ticket that you would like to donate.
Seating is limited to the first 191 people. This is a small theatre and there isn't a bad seat in the house.

We are so honored to have this opportunity and can't believe how perfect the performance is as it relates to Johnny. The production is hilarious and when it played at the Bristol Opera House previously it SOLD OUT -- even after they added three additional shows!

In a nutshell, the show (if you've seen the movie, you know how HILARIOUS it is) is about 5 Yoopers (guys from the Upper Peninsula) at deer camp on the eve of Opening Day of deer season. Is this not the absolute perfect production for Johnny? And since it is happening just before hunting season it is all the more appropriate!

The Bristol Opera House is an easy drive . . . just off the Toll Road at the Bristol exit. Probably about 35 - 40 minutes from Niles. Even closer for my South Bend, Mishawaka, Elkhart, and Edwardsburg friends!

Oh, my gosh. . . I am so excited about this! Get a hold of me soon because once I reach 191, that's it folks, there just aren't any more seats than that!

I am bouncing in my seat with excitement . . .

Man Cave and Other Rainy Day Activities

2009-08-22T10:00:00.004-04:00

Just a quick post to let you all know that we are moving very quickly into our "normal" week.

Johnny is already out of the house and talking football strategy with Varsity Coach Brawley. He will be coaching 7th grade football with the very generous assistance of Coach Craig. Johnny enjoys coaching, but obviously when he was diagnosed we both assumed that wasn't going to happen this year. He even talked to Danny about it. Coach Craig agreed to be the assistant coach and will be able to help Johnny for the entire season; otherwise, it just isn't possible. Jim, we appreciate the time and effort that you are willing to put into this so that Johnny can continue (in his limited capacity) with coaching. Your generosity is overwhelming. (Again, this is where you wish there was something more to say than "thank you". Seems like there should be something bigger than those two little words.)

I will be spending this gloriously rainy day in the basement. If anyone were to peek into the storage section of our basement, I would literally curl up from embarassment. It is an atrocity. So, I have promised myself that I will spend 4 hours today cleaning only the basement. If that isn't enough to get the job done, I will repeat the effort tomorrow.

While we are working down there, the more important mission to accomplish is finishing Jake's "Man Cave". Jake found an old TV with an attached VCR. He also found the motherload of all of our old VHS tapes. He started to drag them all into his room, creating a wall of tapes. That just wouldn't do. Our solution was to create a space of his own in the creepy part of the basement. My friend, Joyce, donated a couple papasan chairs, a book shelf and a TV stand/table to the effort. Jake LOVES the chairs! My brother-in-law, Alan, is even running cable back to the TV so that it isn't just for tapes. I bought a cheapo piece of carpet to "warm" it up a bit. I am even considering buying a small dorm frig for back there. I would have loved a place to hide out when I was a kid, wouldn't you? Quinn tends to dominate the family room, and I think Jake needs a place that he gets to dominate (and I don't have to see the mess of it all).

My mom is on her way home from the hospital right now. Surgery went very well and now the difficult task of healing remains. She will be able to sleep better in her own home. Thanks to everyone that offered up prayers for her. Please continue -- she still has a lot of healing to do.

Golf Reminder:

Please continue to send in the golf registration forms, volunteer information, or prize/raffle donations. All information can be sent in to the address listed on the registration form that you can print from the bottom of the blog. As with any event, it is always so much easier if you get the registration taken care of earlier rather than later. If you have ever been involved in the planning process of something like this, you can appreciate how helpful it is to have it taken care of early.

Thanks again for taking care of my family with prayers, good vibes, electric karma -- whatever your mode may be, we appreciate it all.

And to Deegan -- Toad thinks the toad is AWESOME! You are a good little buddy to Johnny.