Overwhelmed

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

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

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

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

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 . . .