Again from Facebook, back in the day.
So things have gotten, I don't know, more intense in the last few weeks. I've had 2 rounds of chemo since we last chatted. Recovery feels harder from each round. I have remained cancer-free in my cerebral-spinal fluid (I have special chemo into my head for that, and it sucks HORRIBLY, but thankfully, it works) and in my peripheral blood (veins and etc.). I had a bone marrow biopsy yesterday to see if I've stayed in remission in my marrow and haven't heard the results yet. Lets hope I have, otherwise I'll need another induction (just like my first month-long chemo blast) before I go to transplant. Oh, yeah. About that transplant.
Out of 4 potential stem cell donors, none of them made it past the second round of testing. So, that they were not well enough matched, had past exposures to viruses and/or other disease, or that they just plain decided not to do it are all potential reasons they are no longer available as donors for me. However, 2 matching umbilical cords were found. Almost perfectly matched, really. UCDMC doesn't do a lot of UC transplants for adults, so my doctor has referred me to a facility with more experience, specifically, the Fred Hutchinson Cancer Research Center in Seattle. So, we'll be trying to arrange a consultation there absolutely asap. We would have to be in Seattle for 4 months, so they can monitor my recovery after the 1 month hospital stay. Interesting! The Hutch Center has awesome apartments for patients to rent, and insurance will pay for a good part of that. So I'm sort of excited. I've also read just about every paper about cord blood transplants and current research that I can find, and I am more than confident in the procedure. Although still, anything can happen. The transplant should start in about a month. Anyone been planning a vacay in Seattle this summer?
I suppose I should also address "How am I doing?" That is always a very difficult question to answer. I am okay, but I have a new definition of "okay." It involves being okay with a lot of random pains, weakness, and exhaustion. So I'm fine, but I still feel like I am sick to some degree all of the time. Generally I am okay with it, but sometimes it is incredibly frustrating and otherwise just pisses me off. This is something I no longer feeling guilty about...not always "being positive" or "keeping my spirits up." Sometimes my anger is a very productive emotion. I don't particularly care if that is "healthy" or not. I am still entirely determined to everything I can to get well. I am, however, always able to shift my perspective to a more grateful and happy one when I am really down in the dumps. It might take a day or two. Yoga has taught me a lot about that. I feel very fortunate to have the extension of time I already have had (I probably would not have made it this far without treatment). So much quality time with family and friends. Also, insurance will pay for wigs, I just discovered! I have bought 2 and am probably getting one more. They are so fun!!
I plan on letting everyone know when we finalize transplant plans, and keeping in touch through the process. But you should remain dubious that I will be very good about that. I'm almost done reading Sookie Stackhouse books, so I'll certainly have more time, anyway.
Love to all and thanks again so much for the help and support. It has been invaluable. A special thanks too to those who have gotten involved in LLS and Team in Training. I get teary whenever I think about it; and I don't even know what to say. So thanks a lot :P ~jq
For the record, I did stay in remission. For those who are really not paying attention, I did go to Seattle and have a transplant. Also, the "shifting of my perspective" from anger and frustration when things got rough got harder, and harder. Acceptance helped. I seem to be much better now. We are now officially caught up. Next blog we will return to our regularly scheduled programming.
