Tuesday, December 3, 2013

Transplant Day 0: Completed at last

As I mentioned in yesterday's post, the transplant itself was pretty anti-climatic, taking about 30 minutes to complete. After a bunch of pre-meds, the doctor just injected my stem cells back into my port using very large syringes. Worst part was that the preservative used in the stem cells tastes like creamed corn and apparently the whole room reeks of it while I breath/sweat it out of my system. I can't smell it but Julie is wearing a mask to shelter herself instead of me.

Some pics from the procedure today:

Pre-transplant CrossFit

Getting into character



The cooler of life, stem cells within
Performing the transplant on el Luchador
Julie passed out from the creamed corn smell
A cupcake to celebrate my "new" birthday

Today's soundtrack...a bit lighter and a lot more celebratory.

The ultimate party band: Gogol Bordello. They're playing New York New Year's Eve but alas, I won't be able to go.

One of my favorite songs from a band you've most likely never heard of...Kyuss.

And High Hopes from Pink Floyd...for whatever reason, this one always gets me.

Monday, December 2, 2013

Transplant Day -1: Trapped!

Last day of chemo today and woke up PISSED! All morning people are in my room, just get OUT! A little more tired today but counts are still decent and feeling ok. Just need some damn privacy...and to get the F out. I know they're just trying to help but sometimes I just need to be left the hell alone. Without a doubt a cliche but this song just nails today's prevailing the mood:

Today's chemo was 2 sessions but both in the morning separated by an hour so. Done by lunch. This is the one that supposedly is going to "knock me down" a few days after the transplant. The call it the "melphalan blues" and supposedly it will include all the fun stuff: vomiting, diarrhea, mouth sores, and extreme fatigue. Not that I'm looking forward to it but at least that will feel like it's doing something. So far it's almost seemed like they've been giving me chemo placebo. Had another jailbreak in the afternoon when my mom came to visit and they are still none the wiser. Getting it while I can.

Tomorrow is the transplant which should happen around noon. The process is advertised as a lot more anticlimactic than it sounds. They basically just inject the stem cells back into my bloodstream via my port and supposedly they know what to do from their.  Then we're just waiting 10-14 days until they start regenerating on their own and my counts come up so I can get the hell out of here.

...and here's some more positive hardcore brought to you by Hatebreed. A little over-the-top jock-core I know, but it still has its time and place....like last month when I executed a perfect stage dive during a show in Reading in between chemo treatments. Can't stop the Monkee.

Transplant Day -2: Jailbreak!

Are you not entertained? Let me hear your voices in the comments. I'm going a bit crazy in here and it helps to know that people are following.

Yesterday (Sunday) was the last day of the comb-chemo (morning and night) and still not feeling to much in the why of physical effects. Mainly the psychological effects of being stuck in here like a trapped tiger (yes, that's worse than a monkee). Luckily it was a pretty nice day and "security" is lax around here so when Julie and I heard our friend Sean from AK was passing through on his way to Philly, we executed a jailbreak maneuver and hung out with him outside for a little bit before he continued on. Definitely against protocol but the weather was beautiful and my counts are still up.
Incognito/Ninja Monkee... and Sean
Today's soundtrack is brought to you by a band I've been following since 1995 and have seen countless times live, Clutch. Their early stuff still gets me pumped up which maybe isn't what I need right now but I feel like I need to maintain the aggressively positive attitude towards beating this at the expense of making myself a bit nuts.


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.