A day of warm blankets and narcotics.
I have a hard time getting any sympathy from friends and family these days. Since I’m walking and driving and fairly independent my minor complaints are getting brushed off with comments like, “at least you are alive” and “well, you aren’t in ICU so you are fine”. Today is a long day at the hospital of tests and procedures. Most of them involve needles and varying degrees of pain. I got a ride so that I can snow myself with meds for the worst of them. Jeff gets to drive me home drunk. I will have a sore lower back from the lumbar puncture and a painful ass from the bone marrow biopsy and my arm is already sore from my flu shot and radioactive tracer injections. I’ll keep whining until I get some sympathy.
All went well at our appointments yesterday. We had an educational class on allogenic transplant that answered a lot of questions and put dates to things and seemed somewhat hopeful about the future. If all goes well I can get my central line out on day 75 and return to work after 6 months. That seems like so so far in the future and maybe impossible to attain but it is my long term goal and would make me very happy.
The doctor went over some details. She has all the statistics and scary stuff. Dr. Vasu is good for speaking frankly although she has tried to soften it a touch since I told her that I would prefer that she insert a few more unicorns and rainbows into her speeches. Before I receive the new bone marrow I will have a new central line put in, 3 days of twice daily total body radiation and 2 days of high dose chemotherapy. I asked the doctor if I could use sunblock on my face for the radiation. She looked at me and looked at Jeff then asked “Are you joking or is this a serious question?” Jeff says, “Unfortunately, she’s being serious.” Dr Vasu goes into a speech likening my treatment to the nuclear radiation disaster in Japan and how she’s more worried about my heart, lungs and liver than my skin. She also said that leukemia can hide in skin and also in the brain so, no, I may not use sunblock for my radiation treatments. I reminded her that I’d like to hear more rainbows. I told her I would do whatever she said I needed to get better but that doesn’t mean I want to know statistics. She often shakes her head and smiles during our conversations because she’s not sure what to make of me.
We found out that my donor is for sure in Germany. He is 28 years old and will be having surgery on January 14 in the afternoon to remove bone marrow from his hip. For those of you who want to be on the donor registry, keep in mind that MOST donors only have to go through a series of shots and an apherisis blood donation in order to remove donor stem cells. I’m special though and my poor guy has to have surgery. At least they put him out for this. I have this procedure often (including today) and they just give me local anesthesia. He will have pain for the first few days and then will be sore for a week or so. Someone from the James is flying to Germany on the 14th and will put the bone marrow on dry ice in a cooler and fly it to the US and hand deliver it to the James for me to receive the marrow by the afternoon of the 15th. It is given to me as a blood transfusion and the marrow cells will (hopefully) find their way to my waiting bones and begin producing healthy bone marrow. Transplant day is day Zero. Over the next couple of weeks the cells will graft and my blood counts will start to come up. After that I can start to get better. I will have a new and improved immune system, blood type and DNA. I should probably send my donor a thank you card.
That’s the quick summary of transplant. There are multiple drugs meant to prevent the new immune system from attacking my body and there major risks with each procedure and medication but the benefit of no more leukemia out ways the risk.