The second phase of my bone marrow/stem cell transplant starts tomorrow, a difficult and challenging four weeks. The second phase consists of big doses of two chemotherapy agents, one on Monday and one on Wednesday, which will entirely kill off my existing bone marrow, and thus eliminate my body’s ability to make blood cells. On Friday, the stem cells that were harvested from my blood 10 days ago will be re-infused into my bloodstream. If all goes well, those stem cells will migrate back into my bones and “engraft,” creating new bone marrow that will start producing blood cells again within 14 to 21 days.
Before that happens, I will be in a period in which I’ll be suffering both from the effects of the two chemotherapy agents (each of which have their own nasty side effects) and from the effects of not being able to create new blood cells (because my bone marrow will have been destroyed). I’ll have critically low levels of white blood cells (which fight infections), platelets (which cause the blood to clot), and red blood cells (which carry oxygen to cells around the body).
The expected side effects, particularly from the chemo agents, are painful and very unpleasant; I will spare you the gnarly details. The critically low level of white blood cells will give rise to a significant risk of infections — including infections that may not be controllable with antibiotics, antivirals, or antifungals. There is also a tiny risk that the stem cells will not successfully “engraft” (although if they didn’t the first time around, they’d try a second transplant using stem cells they held back from the first transplant).
I’d be lying if I said I wasn’t apprehensive about getting through the next four weeks. The risks are scary, but I know they are very small. The difficult and painful side effects, though, will happen, and there’s no way to know how bad they will be, or how I’ll react to them. It’s daunting to be facing up to four weeks of pain and fatigue. On the other hand, this phase of the transplant has been hanging over my head for seven months, a blot over my future that I have had a hard time seeing around. No matter how bad it is, I’m glad I’m starting it, so I can just get it done.
One item of good news is that when I met with the doctor at Stanford last Wednesday, he told me that I’d produced about 3.5 times the amount of stem cells they normally need to collect for a transplant. (The actual amount was about 1,483,900,000 stem cells — yes, that’s 1.4 billion!) Since they will be infusing 3.5 times the normal amount of stem cells during the transplant, the doctor said it’s likely the time it will take for my white blood cell counts to get back to semi-normal levels — and thus the time it will take for me to start feeling better — would be reduced by 2-3 days from normal. I’m hoping that occurs.
The stem cell procedure is planned to be all outpatient: We have to go into the infusion clinic at Sanford every day for blood tests and possible additional steps depending on the results of the blood tests. But between 30% and 50% of patients end up being hospitalized (either due to infections, to treat pain caused by the chemo side effects, or for other complications, like dehydration and lack of eating). I’m hoping I can avoid the hospital — I prefer to be miserable on a couch in front of a big screen TV — but we’ll see.
Please keep sending positive thoughts our way; I’m sure that wherever you are, your good wishes will bounce off the ionosphere, focus themselves onto our temporary apartment in Menlo Park, and have the desired effect. The support Suzie and I have received from our friends and colleagues continues to be amazing, and we’ll never forget it.
It will likely be radio silence from me in the next 4 weeks, since I don’t know if I’ll be up to writing. But please feel free to send me emails or texts, as I’ll be isolated down here, and would very much appreciate hearing from you all.
I look forward to being with you all again after this phase is over, to having my regular life back, to being (eventually) my normal self again. Most of all, I look forward to being able to look forward again.
See you all on the other side.
Categories: SSS Health