Wednesday, December 18, 2013

Home from Transplant, What Now?

I got out of the transplant unit Monday afternoon and returned to my parent's in NJ where I'll remain until I am cleared to go back to Alaska which will at least be until March 13th, 100 days from transplant.  From the day of transplant, it took my white blood cells 13 days to recover to the point that I could leave.  I was shooting for the record of 10 days but went over, mostly because the radiation burns were peaking right as my counts went to 0. The weight is still dropping (not sure why) and at this point I'm down about 20 lbs from when I went in. The last time I saw 163 was probably early in college.

In all, I think I fared pretty well as far as side effects experienced vs expected.  There was nausea but no vomiting, no explosive diarrhea, not a hint of a mouth sore or pain. Just a lot of fatigue. The most discomfort came from the lack of sleep due to people constantly checking on me and the constant itching/burning of my radiation burns when they were at their peak.

Now that I'm out, everyone has all sorts of "what now?" questions. I'll see if I can address them here:

Q: Are you cured?
A: Can't say at this point. They do another PET scan 100 days after the transplant (3/13) to make sure there is no evidence of cancer. If there isn't, I think I can go home. If there is...there won't be. Even if there isn't any cancer, they don't consider you "cured" until you've gone 5 years without a relapse, which is still a concern for me given the nature of the cancer I had.

Q: Are you allowed out?
A: At this point, no. I'm restricted from public places so I'm pretty much on lock-down at my parent's until my blood counts get up to a certain level which I need to find out from my doctor. The estimates for when these levels will be reached vary greatly depending on the person but we're thinking at least 30 days of "house arrest". Could be longer but hopefully not.

Q: Can you have visitors?
A: Yes, as long as no one in the household is sick and no young children. They may not be sick but they tend to be "carriers" from school/day care. E-mail, call, or text me if you're thinking about stopping by and we'll see what the schedule looks like. I'll be here for awhile though so no need to rush, especially since I'm not real "dynamic" right now.

Q: How do you feel?
A: Totally run down but making the best of it. I'm not sure if it's all the chemo I got, the low blood counts, or some combination therein but it's going to take me awhile to get back to my normal physical self. How long...again it varies greatly but I'm going to push to get back in shape as hard as allowable. I'm already making a point of walking at least a mile a day but after that, nap is required. I'm eating fine and sleeping a lot to make up for all the sleep deprivation while in the transplant unit.

Monday, December 16, 2013

Transplant Day +12: Third HLE of the Year

What's a "HLE" you ask? That would be a Hair Loss Event and today marks the third one of the year. Much like the last one, it pretty much all came out at once in a single day. It grew back pretty quickly the other two times and hopefully I haven't pushed my luck and it will come back one more time.

In all probability, I will get out of the hospital tomorrow. At that point it will have been 20 days in, so I'm really looking forward to escaping. REALLY.

Saturday, December 14, 2013

Transplant Day +11: Hard Times and the Light at the End of the Tunnel

It's been 9 miserable days since the last update but things are starting to look up.

  • Day +4: I officially went neutropenic which means my white blood cell count (WBC) was low enough that I did not have an immune system. This was expected and had to happen before things go start going back up. First neutropenic fever (not bad, 100.5) in the evening which meant I would be on IV antibiotics until I was no longer neutropenic.
  • Day +5: WBC went to 0. Again, expected and was expected to remain there for several days. Got my first infusion of platelets which are needed for your blood to clot.
  • Day +7: White blood cells made a token reappearance but still way neutropenic. Got my first infusion of hemoglobin so my blood could carry oxygen to my body. (Kinda important)
  • Day +11 (Today): WBC count went up to 1.9 which is over the 1.5 neutropenic level. The doctor says I can go home Monday morning as long as my counts don't drop (not expected) , I don't get any more fevers (so far, so good), and I can drink and eat enough. Of those things, drinking enough will be the biggest challenge. I have been on continuous IV fluids for the past 2 weeks and haven't needed to drink much. Now drinking just makes me feel sick and bloated but I've got to power through it if I want to get out of here.
While the delivery of the chemo (6 months worth in 6 days) and the transplant procedure were actually not that bad, the past 10 days or so have been ROUGH. I've actually been very lucky as far as the rougher chemo side effects go. Nausea but no puking, no mouth sores, and no diarrhea which is apparently is nearly unheard of with this procedure. I did stop eating on days 4 through 6 and haven't eaten that much on the other days. Early on, I was in the most discomfort from the radiation burns and chemo rash which really started developing on my armpits and back. I was either itchy or burning at all times for several days and there was nothing that really could be done but wait for my WBC to come back up so it could start healing. That did start healing up this week but the chemo and lack of sleep have caught up with me despite my counts coming back up. I feel completely run down and miserable and unfortunately this expected to continue well after I get out of here. Recovery is going to be a challenge.

Once out, the goal is to stay out which means no diarrhea/puking, no fevers over 100.5, and no infections. I will have a weekly follow up where they will check my counts and other levels to make sure I'm recovering. From here, the next big milestone is 100 days post-transplant (3/13) where I will get a scan to make sure there is no cancer. So we'll be here through mid-March at the very least.

Thanks for all the well wishes and prayers. Go Eagles!

Update: I freakin' knew it! 15 minutes after posting this, I puked for the first time.

Thursday, December 5, 2013

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 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.