Saturday, December 26, 2009

Post Christmas Laziness

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?!!?

Tuesday, December 22, 2009

Not a creature was stirring . . .

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.

Monday, December 21, 2009

Last Day of Chemo!

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!!

Wednesday, December 16, 2009

We are still here!

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?

Monday, December 7, 2009

Number Eleven

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.

Wednesday, December 2, 2009

Mr. Jett

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!