The Waiting Game
When they told me treating blood cancer is a marathon, not a sprint, they weren't kidding.
When I last wrote I left things hanging a bit, but I completed my fifth dose on the second cycle of SL401 without issue and was released from the hospital a week and a half ago. As I recover from each cycle of SL401, there is a lot of waiting. We wait to hear about lab results and where we are in the bone marrow donor search/transplant process. We also watch for diminished presentation of the cancer in my skin.
Between SL401 doses, I spend much of my time trying to stay healthy both mentally and physically, dealing with insurance (health and long term disability), and attending doctors appointments at The James. Last week, I had all of my normal lab and follow up appointments as well as some new ones with physicians in the Radiation Oncology Department. The RadOnc physicians explained and reviewed side effects of the total body irradiation that will be coupled with high dose chemotherapy as part of my pre-transplant regimen. The purpose of the pre-transplant treatment is twofold--to get rid of any lingering cancer cells after my last SL401 cycle, and to destroy my own bone marrow to make way for the new.
I was also measured for radiation treatments this week because the doctors need several weeks lead-in time to calibrate the machine. The process was very involved, and included being fitted for a radiation mask that made me feel like Hannibal Lecter. I am also the proud owner of six freckle-like tattoos that will help my team align me on the machine down the road (I had no tattoos before). There's nothing like being inked and having a mesh mask drying on your face with six people hovering around you to make you feel a bit like a lab rat.
I won't have my next set of bone marrow and skin biopsies until later this week, so no news yet on that front. My bone marrow transplant coordinator is keeping me updated about the donor search process. Right now we're waiting on blood test results from a handful of potential unrelated donors to confirm whether they sufficiently match my HLA typing. Timing of the transplant at this point depends largely on a potential donor, but I've been given an estimate of sometime in February or March.
Until then, I will continue on to successive SL401 cycles, and I'm tentatively scheduled to begin the third cycle at the end of this week. We recently hit a slight insurance snafu so cycle three may be slightly delayed, but hopefully we'll get everything straightened out and approved so we stay on track.
Until then, your continued prayers, well wishes, and support are very much appreciated. And, please don't ever hesitate to reach out to me or John if you have any questions. We are more than happy to answer them and you are never bothering us. Sometimes going through this can be very isolating, and it's just nice to know you're there, that you care, and that you're interested in what's going on.
Hoping you and yours are well.
