Day + 92… 92 days ago, I received 9 million stem cells from a perfect stranger, 9 million life-giving cells, and I still can’t wrap my mind around it.
I never imagined I would have a stem cell transplant. Well, it is not quite accurate, I always knew it was a very remote possibility, but I was hoping for a new treatment, a new drug, a magic pill that would cure MF. Furthermore, we had checked the registry three times in the past ten years already and never found a match… I have a very diverse ethnical background, and while it makes my genealogy and family history very interesting, it complicates HLA matters quite a bit. As a single parent, it was crucial for me to wait until my boys graduated from high school before I could allow myself to make some more difficult decisions for my care, such as a transplant. I moved from LA to PS in the hope of lengthening my life until my boys were old enough. And so, my health stabilized for a few years, I learned to adjust to a lower and lower hemoglobin, and I pretended I could live this way for ever, or at least for a very long time till an undetermined faraway future. I had done this for so many years that I was resigned to live with the never-ending fatigue I knew so well, with “my normal”. After all, I was managing to do the things needed to take care of the boys and run the household. The thought of a transplant – which couldn’t be in the picture anyway because of my boys’ ages and because of my unique HLA type – was not even part of my thought process. I knew it could happen, perhaps, some day, far, far into the future…
In the summer 2014 my health started to deteriorate more quickly, my hemoglobin started to slip faster and not rebound, and by the beginning of 2015 I had become transfusion dependent. Specialists at UCLA and City of Hope both declared it was time for an SCT, sooner rather than later. What a shock! It was not supposed to happen for another… many years! I was in total denial at first. I heard and understood the words spoken to me, but I could not comprehend what was happening. I was totally dissociated from this person that needed a transplant. It wasn’t me, it couldn’t be me! I was in total denial and I was numb, I couldn’t feel anything, which concerned my therapist who encouraged me to experience fully whatever emotions would come forth. And then I did, feel fully that is, and it hit me like a ton of bricks! This thing that wasn’t supposed to happen for many, many years, was finally here, it had to be done, they said! Of course, there was this little matter of finding a match, and based on my previous experience, it was not likely to happen. My boys were tested and I was presented with the possibility of a Haplo transplant, but it is still a fairly new procedure and, although the results are quite successful so far, there is still very little data for myelofibrosis, so my doctor preferred waiting a little longer in order to find a MUD. He felt optimistic about finding one, which surprised me because of my previous experience. But he did, not only did he find a match, but a 10/10 at that, astonishing! This was nothing short of a miracle, even though I’m not sure I believe in them… But that also meant that this thing that was not supposed to happen to me was about to happen, it appeared I was truly going to have an SCT…
What I did next was to live my summer to the fullest, and in fact, that is probably the best summer I have ever had! I travelled, accepted every single invitation to dinner or a party, ate more sushi and fresh oysters than one can possibly imagine, cut my hair in several stages and dyed it blond, and made sure I had enough pajamas to wear in the hospital. I talked to many transplant survivors to find out what to bring to City of Hope to make my stay as comfortable as possible, I listened as they related their experiences to find out what to expect during the transplant. Everyone is unique, and every one’s experience is different, which is why hearing from a multitude of people was quite informative.
Before the big day arrived, on September 22nd, I was ready, more so than I could ever be, and I was terrified! I was prepared for the worst while hoping for the best. It is a cliché, I concur, but it exists for a reason, because it is really true. I went in ready to surrender to whatever would happen, I was prepared to go through hell and back, and repeat. I knew it would take a good part of a full year, perhaps more, and I was ready to give up that year to get the rest of my life back. I was ready to kick MF’s butt!!
What happened was a little different. Yes, chemo made me sick, I lost my hair (but I got a Mohawk in the process followed by a henna cap tattoo later!), had bone and joint pain, fever and chills, terrible nausea and vomiting, not to mention diarrhea, was readmitted to the hospital on the evening of my release, had – still have- raccoon eyes, suffered from unbearable fatigue so overwhelming that one feels lost and unable to deal with it. Yes, all of this happened, but yet, nothing like what I had prepared for, nothing like what I knew could have happened, nothing like some of the experiences I had read and heard about. I had no bad reaction to the infusion of my donor cells, no GVHD (so far), kept my taste buds intact and continued eating normally throughout, was able to walk daily. All in all, I don’t feel I have much ground to complain, things have been going as well as they possibly can at this stage of my recovery. My doctor is always pleased with my results and even started reducing my anti-rejection meds. I do get transfusions once in a while still, and I continue feeling quite fatigued, but I am 99.93% engrafted and that’s the best I can hope for.
On Day + 83, I got more news: my blood had officially converted from O+ to A+! This is so amazing! My bone marrow is male, XX, and the rest of my body is female, XY. I was born with female O+ blood type and converted to male A+ marrow and blood. So, what does it all mean, what does it make me? Male? Female? Androgynous? Transgender? Am I the same Beatrice I was all my life? Am I going to have strange cravings and different interests? How much more fascinating can it be! I love the idea of having both XX and XY chromosomes, it fits in so well with the tomboy in me, I find it both kind of cool and fascinating! Nonetheless, my doctor says that this is the extend of the changes in my body, that I should not expect chest hair, or beard, or anything of the sort… :)
I have no idea what to expect, but all I know is that I now feel the future is wide open to me, as if the chains that had been holding me back for as long as I can remember, are finally broken, and, even as I still feel quite fatigued and still have transfusions from time to time, the future seems wide open, anything is possible, I can do anything I feel like (almost) without restriction!
My doctor is used to my unusual weekly questions, but you should have seen the stunned look on his face when I enquired about the possibility of doing flying trapeze! “This is not a question I am usually asked!” he said.
I feel that if I can survive an SCT, I can accomplish anything! I have already booked flying trapeze classes and tango lessons, I am looking into sky diving, rock climbing, pottery, Jiu Jitsu, drumming circles, and that doesn’t include all these places that are waiting for me to visit; the world is vast, there is no time to waste!… I don’t know when I’ll have the time to do it all, but I intend to try! Only one thing is clear to me, and it is that anything is possible.
Through City of Hope, I sent a thank you Thank You card to my donor. In it, I told him I would think of him each and every day, and I promised him I would make his gift, my new life, count; I cannot disappoint him!
So, today, at Day + 92, on January first, as a new year – and a new life – is beginning, I look back and remember how lost and terrified I was a few years ago, and how all seemed hopeless. Today, I cannot help but marvel at the road I have travelled, at how far I’ve gone, at the hope for the future that lays before me. I do not take anything for granted, and I know I still have a long way to travel, but I am determined to walk it steady to the other side of the tunnel where the light is shining bright.
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