(A little drum workout to accompany this post)
It’s now been a year since I was diagnosed with B-cell acute lymphoblastic leukemia. It’s been a very long year that included 12 rounds of heavy chemo, pneumonia, a cardiac arrest, a life-threatening sepsis infection, hospitalizations for neutropenic fevers, multiple blood and platelet transfusions, and way too much hospital food. Through it all, I was blessed with the support from a network of friends and family and first-rate medical care…for which I am eternally grateful. In many ways, I feel fortunate.
Now it is time to climb the next mountain. I will be admitted to Cedars on Thursday May 16 to begin the process of receiving a stem cell transplant. What follows is what I intend to be a realistic and dispassionate overview of what’s ahead for me. I try to keep things I post here skewing to the positive. And while I think the path is still encouraging, it is a bit rocky. So, this is a warning about the unvarnished nature of what follows.
Here’s how it will go…..
- On Thursday, I’ll receive some very nasty chemo that will wipe out my immune system. The greatest level of discomfort at the outset is the possibility of mouth sores…often quite painful…that are mitigated by sucking on ice chips.
- For the next several days, I’ll receive some additional chemo.
- I’ve been advised that on Monday, May 20, the donated cells will arrive.
- On Tuesday, May 21, I’ll undergo an hour or so of full body radiation..which is primarily intended to prepare my body to receive the foreign cells. I’m told this is usually pretty benign.
- On Wednesday, May 22, the donor’s cells will be transfused into me. This is the actual transplant, although the procedure itself is rather anti-climactic. Nothing more than bag of cells connected to my PICC line for about an hour.
For the following several days, I’ll receive various drugs that attempt to mitigate rejection of the foreign cells. The nasty effects of the chemo typically kick in about 7 – 10 days after I receive the nasty chemo…meaning I’ll feel pretty crappy during the week between Memorial Day and the end of May. I’ll be weak and possibly nauseous. I’ll have zero immunity until the donor cells engraft…which they slowly begin to do over the ensuing weeks.
I’m told to plan on about a 3-4 week hospital stay. Followed by about 100 days of rest at home where I’ll be slowly recovering.
Clearly all of this involves risk. Specifically:
- It may not work. The odds are decidedly with me, but if it doesn’t work, I’ll need to consider several “salvage” therapies that are newer and not necessarily proven.
- There is a risk of some rejection of the foreign cells. I’m told the medication provided post transfusion does a good job of mitigating these risks. There are two levels of risk
- Chronic symptoms, such as dry eyes or skin rashes. About ½ of transplant patients experience these symptoms. They can be minor to not so minor.
- More acute symptoms, such as contracting an auto immune disease such as lupus or severe arthritis or some organ failure. These are less likely, but are certainly a risk.
- There is some risk that I’ll get an infection while I have no immune system which could be life threatening.
That’s the Steven King version, though. I’m moving forward with confidence but I’d be lying if I didn’t admit to being somewhat anxious. I worry about how rotten I’m going to feel for the next several weeks. I do NOT look forward to spending 3-4 weeks in a hospital room. Of course, I have concern about how well the procedure will work. I’m concerned about the rejection effects. And, of course, I’m worried about coming out of this OK.
I’m not sure how much energy I’ll have over the next several weeks to post updates. But I’ll update you as I’m able.
I do think I’ll be OK. Maybe a little banged up, but generally OK. Keeping my fingers crossed…and even a few toes for this one.