Progress Report
Today marks six months since I received stem cells from an unknown 21-year old woman and got a new lease on life. The transplant replaced my bone marrow which had developed a life-threatening mutation, a mutation that caused Acute Lymphoblastic Leukemia. Now all of that is in the past.
Next week I have my three month bone marrow biopsy (hurray, those are so FUN) plus I’m revisiting another delightful procedure. Last Thursday I met with my Nurse Practitioner and doctor for a checkup. NP casually mentioned something I found unintelligible. After Googling what it is, I think she said “intrathecal”. Weird I didn’t catch that. It’s basically the worst. They will inject some chemo poison directly into my spinal column, which will eventually travel up to the old brain.
Now I’m FINE WITH THAT really. I didn’t know it was coming. They had never mentioned I would ever have anything like this again, but of course Thursday they acted surprised I was surprised. I think they THINK they have conversations with me that never take place (the mandatory caregiver talk that didn’t happen until a week before I was admitted springs to mind), and after IMAGINING it took place are confident I’m duly informed. But I remember shit like that, and it never happened. And that annoys the hell out of me. They are great at medicine and not so great about basic communication at times. But I am fine with getting this procedure, because it’s okay to be extra special sure I don’t get any cancer in my brain. NO PROBLEM.
So this is an extra precaution. But it won’t be as pleasant as the first time. I told NP that at Methodist I was given dilaudid during this procedure. She looked shocked. Poor thing. I told her I knew they wouldn’t do that since I was an outpatient, but to tap my spine and expecting to send me home with instructions to take Tylenol if my head hurt (and it will) was foolhardy. I wanted Percocet. I was very clear. NP called in the prescription that afternoon. I already picked it up.
So that’s what on the horizon, but I’ve come pretty far. I have an inch of hair, growing in all dark grey and mousy, so I dyed it magenta. My toenails have nearly gotten back to normal after the molt (I think I’m all done with the molting now...is this just a gross transplant thing or do other cancer patients have this crap?), and my appetite and most of my taste is back. Can’t have sushi yet, and carbonated drinks and spicy foods are still not working for the tum tum, just about everything else is ok. My t-cells are at AIDS patient levels, but they’re growing back. My blood count and electrolytes are totally normal.
I’m going out to dinner with Tom to celebrate. I’ll probably get a steak. I don’t even have to eat it well done anymore (because burned steak is an abomination!!). I will have three glasses of wine, minimum. Because it’s Friday, I’m celebrating, and I can.
T + 6 months!
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