Saturday, November 30, 2013

Transplant Day -3: Monkee in a Cage

Almost done and not much different from yesterday. Still feeling pretty good except that I'm pacing the halls of the unit like a Monkee in a cage. I know the feeling-bad times are around right around the corner somewhere but right now...I just need to move and there's nowhere to go. I think this little diddy captures the mood pretty well.

Fellow residents of the unit, consider yourself warned. There's a Monkee in your midst and he's not happy about it. "I WANT OUT!"

Jailbreak tomorrow?

Friday, November 29, 2013

Transplant: Days -5 and -4

Not too much to report here. On days -5 thru -2 of the conditioning chemotherapy regimen, I get the same 2 drugs at the same time each day. Etoposide and Cytarabine for an hour each starting at around 9 and then another hour of Cytarabine again at 10PM.  Etoposide was part of the ICE regimen I was getting leading up to the transplant but this time I'm at 4x the dose. This is the drug that was making me puke in the hospital before but so far I've tolerated it much better this time. Weird.  Still came down with the chemo hiccups on the second day of treatment but we've found a drug that seems to help settle that down pretty well. Drugs on top of drugs...that's the story of my life now.

The goal of the conditioning regimen is to a) kill any remaining cancer that may be lurking and b) suppress my bone marrow, ie kill my immune system. This second "goal" is monitored by daily counts of my white blood cells, hemoglobin, and platelets. Left alone with this chemotherapy, they would go to 0 which would mean I'd be dead because, at the very least, if there's no hemoglobin, there's no oxygen in your bloodstream. That means that at a certain point, close to 0 (?) they have to start giving me transfusions of blood while I'm still getting the chemo. This ensures that I remain "viable" while waiting for the conditioning regimen to finish up and the transplant to be performed. Am I worried about this process...oddly no. I continue to feel disconnected from the potential risks associated with it. Maybe as the chemo continues and my condition starts to deteriorate as an expected part of the process, it will start to sink in a bit more.  Right now though, not nearly as scary or adrenaline pumping as getting charged by a brown bear.

One of the things they tell you will help you deal better and get out faster is to try to remain as active as possible. I've made it a point to walk at least a mile each day while in here (26 laps = 1 mile) and I've even snuck out of the unit a few times to walk the stairs because walking in circles is BORING. It's only been 3 days and I can't wait to get the F out. I asked the doctor today what the record was for getting out of here post transplant. Provided there are no complications from my radiation burn, my goal is to at least equal that record.

Oh, also, I had another PET scan right before I came in for the transplant, and although they were telling me the effects of the radiation treatment would not be visible for a couple more weeks, they actually were. The nodes in my armpits are gone, ANNIHILATED by the radiation. That means that I can say I went into transplant cancer free, in remission, which means a lot to me because it offers a significantly better long term prognosis. Less chance of another relapse.

Thursday, November 28, 2013

Transplant Started...Finally!

So yesterday, the day before Thanksgiving, I finally went in for my transplant.  Not much exciting to report on the day's activities. Lots of baseline testing to be performed prior to starting the chemo but finally started that around 3 and it only ran for an hour. The biggest issue of the day was fighting with getting the PS3 connected to wireless. The first room we were in did not have any problems but then we moved to a bigger room when it was ready and frustration ensued.  If I cannot stream Netflix everyone on the floor is going to be miserable. This room is much nicer though. I'm calling it the "Sunrise Suite" as it has a nice view of the sunrise over NE Philly. Hardly the your typical Alaskan view but it sure beats the usual Philly hospital view of a brick wall.

They count the days of transplant a bit oddly in that the day of the transplant is referred to as Day 0. Probably because they just about kill you with the high dose chemo and then save you with the transplant. Some people refer to it as their second birthday. There are 6 days of chemo before the transplant day so I started on Day -6 and today is Day -5. Each day is only 1-2 hours of chemo but it is very high dose stuff. Still not sure what I can expect as side effects or when they'll start kicking in but I'm not looking forward to it.

Yesterdays drug, BCNU, was distilled with a grain-like alcohol so I thought I might catch a buzz off of it but it skipped the buzz completely and went straight to the headache hangover stage.  Boo! Luckily they shot me up with some Benadryl and that counteracted it pretty quickly. Today I'm getting an hour of Etoposode and Cytarabine each and I will get the same combo for each of the next 3 days. I haven't had Cytarabine before but I had Etoposide with the more recent ICE chemo regimens. It's the one that had me throwing up in the hospital despite all the anti-nausea meds and this time it's quadruple the dose. LOOK OUT!

Friday, November 22, 2013

Done With Radiation

Today I completed my 18th and final radiation session. Compared to chemo, radiation has been a cake-walk, the toughest part being the drive to-and-from treatment each day. The typical side effects of radiation are fatigue and burns at the treatment sites. I didn't suffer from any (more) fatigue and have minimal burns, although they will continue to develop over the next week or so. Oddly the burns are primarily on my left side even though I was treated on both sides with the same dosages.

It typically takes a couple of weeks after the end of radiation treatment for the full effects on the tumors to be realized.Unfortunately we'll never get to tell how "well" the radiation worked because a few weeks from now I'll be in the middle of the stem cell transplant process.

We're now finally ready to go to transplant and I'll be starting that on Weds, right before Thanksgiving. Not the ideal time to start but it gives me the best chance of getting out be Christmas. We'll be celebrating Thanksgiving this weekend instead.

The transplant will be 6 days of high-dose chemotherapy followed by the re-introduction of my stem cells that were harvested last month. Then it's just a matter of dealing with chemo side-effects (said to include diarrhea and substantial mouth/throat sores this time) and recovering.  There's no set time-frame for getting out of the hospital, but they estimate 2-3 weeks after the transplant is completed.  Hopefully that's before Christmas but it all depends on when my stem cells start reproducing on their own. Even once out, I'll be extremely limited until my blood counts (ie immune functions) get back up to an acceptable level.

The radiation machine. The patient lies on the table while the head of the machine rotates around to treat the appropriate areas.