It has been just barely under 4 seemingly long months since I found out that I had Acute Lymphoblastic Leukemia (ALL for short) and that I had the fun little mutation of the Philadelphia Chromosome (PH+). There have been some rough stretches, but really, when all things are considered I’ve had a pretty blessed ride up to this point. I read stories of people with ALL or PH+ leukemias and you hear a lot of struggles, lots of pains and lots challenges that up to this point I haven’t been forced to go through. I’ve had a few rough days here and there, but when I look back at it, the physical torture that you hear about when people get cancer has largely been shielded from me. I have been blessed, and more importantly I’ve been grateful for those blessings.
On January 13th I checked into the hospital and started radiation that same day. For total body irradiation you stand in front of a wall, they aim the radiation producing machine at you and you aren’t supposed to move for the duration of the experience. That 9 plus minutes on the front and 9 plus minutes in the back. Adding a quick 20 second blast to the head for good measure, I was getting nuked for almost 20 minutes a day. I spent a lot of those days sleeping because there are two things that radiation really does to you… causes fatigue and makes you really nauseous. Took a few days to figure out the drug regiment to get the nausea somewhat under control, but we got it to the point where I was only puking once a day. I can handle that.
Next came the things that I think I was the most scared of… Cytoxan. The name of the chemo alone just scares you into thinking you’re going to die. Turns out it was one of the easiest chemos I’ve had. I had way more problems with the combination of Mercaptopurine (otherwise known as 6MP) and methotrexate. I used to say that methotrexate was not my friend, but we later figured out that it was most likely 6MP that was the culprit. More on this in a later post. But the Cytoxan, most likely because we had already figured out how to deal with the nausea during radiation treatments, came and went like it was no big deal.
The only scary part of the process came Monday when I got an anti-rejection treatment called ATG. If I remember the description properly, it is essentially a serum from rabbits that has antibodies that help rejection of transplants. It turns out that the rabbits have something against me, because Monday was one of my hardest days ever. Shortly after the bag was hung, I got these radical chills with intense shaking. Even under 4 blankets I couldn’t warm up. Finally the nurse asked for help on what to do and they gave me a shot of demerol. That took away the shaking, and eventually the chills, but then I got to the point where I was spiking a pretty intense fever of 38.9˚ C, or 102˚ F. I was so uncomfortable I couldn’t sleep and when blood pressures of 180 over 100 would register she would say stupid stuff like “I think it is supposed to do that.” Shortly after the ATG was fully run in, still had a fever (bouncing between 38.4˚ and 38.7˚) but my blood pressure bottomed out pretty fast. 80 over 40 with a heart rate of 134. My dad described the problem as “your heart sucking really hard on a straw and not getting anything when it sucks.” It was scary enough that those of you who are friends with me on Facebook heard me make a plea that I have never made before and will most likely never make again. The staff on East 8th (the bone marrow transplant center) didn’t know what to do next, so they shipped me down to the ICU, which just turned out to be a waste of time because within an hour of me being there (and them doing nothing other than watching and saying, yeah, your blood pressure is low) my blood pressure came back up on it’s own and my heart rate started to drop. Sleeping and ICUs don’t go together, so I ended up taking a pretty long nap the day after when they let me come back up to my room on East 8th. I was so excited to get out of the ICU that my nurse asked if I would help push the bed and I said “Hell yeah I wil…” that’s how excited I was to get out of there.
Yesterday they decided that I didn’t need the second dose of ATG as it’s benefit is a marginal improvement over the first dose. As my doctor put it, “We put it to the uncle test. If this were my nephew and I was asked what to do, I would have said no.” So yesterday ended up being really boring, which I was all for because the previous day has sucked so incredibly badly that I was ready to just enjoy a nice relaxing day.
And that brings us to today. The start of my new life is today because I will finally be getting my new bone marrow. My wife wrote an amazing thank you letter to the donor which sums up my feeling way more eloquently than I could have come up with. This is where I get excited because this is like getting a contract extension on my lease on life. Instead of having a finite amount of time left (as in under a year) I still have the possibility of many many more years here. That’s not to say there won’t be challenges getting the new marrow to behave properly with my “old” body (34 isn’t old, but right now it feels old) and some of those challenges may suck royally, but as long as this new bone marrow takes, I can’t see how I don’t have a long amazing life ahead of me.