After weeks of feeling like I'm being pushed by armed guards towards a door I don't want to go through, feet sliding on the ground as I keep heading towards that space, I can finally say that I'm ready for this transplant.
I've passed all of the tests and according to my doctors, I'm in an ideal condition to move forward with the transplant, and I should tolerate it fairly well. On Tuesday, I signed my life away and the cords were ordered from Europe, set to arrive tomorrow. I can't begin to explain how grateful I am for science and mothers who have had the opportunity to donate their umbilical cords and placentas. If you have this option available in your area, I urge you to consider donation. Umbilical cords and placentas are treated as medical waste and simply thrown away, when they have the potential so save someone's life.
Dr. Fillipo Milano at Fred Hutch recently had a manuscript published in The New England Journal of Medicine that detailed a study comparing cord blood transplants, matched unrelated donor transplants (10/10 HLA match), and mismatched unrelated donor transplants (8 or 9/10 HLA match). The study found that at 4 years post-transplant, 71% of patients were still alive in the cord blood group, 63% of patients were still alive in the matched unrelated donor group, and 49% in the mismatched unrelated donor groups.
If it weren't for science and research, I would find myself in the mismatched unrelated donor club. The 71% statistic is still a little intimidating, but 49%- I'm really glad that I'm not in that group. Minimum residual disease (MRD) was found to play a significant role in patient outcomes in Dr. Milano's study. After having my bone marrow and lumbar puncture a couple of weeks ago, I received results that I had no MRD and no evidence of NPM1 mutation on the smallest scale they can test, so this is really great news heading into the transplant. I couldn't ask for better results.
I would say that my short term concerns are going to be how my body handles the chemo and radiation. Ideally, I'll only experience side effects (fatigue, nausea, decreased appetite, mucositis (I'm especially hoping for little of this one), etc). The degree to which I may experience these side effects is mostly out of my control, but I've been trying to remind myself of a birth affirmism I used during pregnancy and labor which is "My Body is Strong and Capable." I also feel hope in that this may be the last chemo and radiation that I ever have to receive. It is very possible that I could live the rest of my life as a healthy human being, and that sounds really freaking awesome.
There's been a slight change in my treatment schedule, which will hopefully work out in my favor. I'll be going through radiation first and chemo second, which they say may minimize side effects. I start the radiation as outpatient this Sunday. Radiation will be Sunday through Wednesday with a rest day on Thursday. Fludarabine (chemo) starts on Friday. On Saturday, i'll check into UW Med Center for the remainder of chemo (fludarabine and cyclophosphamide) and the transplant which is confirmed for 9/25.
Until I go in for radiation, I'm on a food tour. First up tonight is Jak's Grill for my last medium-rare filet mignon (I'm so hoping they have the option that includes duck confit with truffle sauce on top) as long as I'm on immunosuppressants, which could be a year or more, but is guaranteed to be at least 6 months. Possibly tomorrow is Thai Tom before my stomach gets too sensitive and also attempting to eat my weight in Brie since unpasteurized, uncooked cheeses are not allowed either. Gotta get in the last bit of treats before the start of my 3rd opportunity at life.
I hope to get in another blog post while I'm going through the conditioning and transplant, but if I don't, I'll see you all on the other side. Thank you to all of you for your prayers, love, support, good vibes, and really making me feel like I'm not alone, in the good times and when the going gets tough.
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