From a certain point of view...
There's a scene in A New Hope in which Obi-Wan Kenobi is tells Luke Skywalker how Darth Vader killed Luke's father, Anakin Skywalker. Later, in Return of the Jedi, Luke confronts Obi-Wan about this as Vader has revealed that he is Luke's father. Obi-Wan defends his position by saying that what he told Luke was true from a certain point of view. This "certain point of view" angle is one that I've often recalled during my battle with Multiple Myeloma as it frames things in a way that makes a process or a result a tad clearer or perhaps easier to swallow.
Last Friday, I had an appointment to see the transplant team at Cleveland Clinic again. Dr. V had brought up the prospect of another stem cell transplant as a way to treat my cancer. I didn't really relish the thought of another 1/3 of a year (or more) being lost to recovery from something that may or may not work. The last time I had a transplant, it was an autologous transplant, one that used my own stem cells to repopulate my bone marrow. As I have already written earlier in the year, this transplant only garnered me a brief 22 months of remission. It's not terrible, but it's also not a tremendous amount of time. So why are we talking about another transplant? Dr. V said that he and Dr. H were talking about my case and they thought that an allogeneic transplant, one using cells from a donor, might net me some success.
Lou and I saw Dr. H this past Friday and asked our questions and got some information about the process. The allogeneic (or "allo") transplant is not one that is routinely done these days. Since they have been treating Myeloma as a chonic condition, they have been able to keep things manageable for most patients. Unfortunately, I like to keep things interesting and the doctors have had to acknowledge that my cancer shows markers of being one that is difficult to treat--even with the new drugs and therapies. CAR-T cell therapy is still in its developmental stages, so that isn't one that we can explore; not locally anyhow.
This type of a transplant carries with it more risks due to opportunistic infections and the dreaded host versus donor or graft versus host disease (a condition that might occur after an allogeneic
transplant. In GvHD, the donated bone marrow or peripheral blood stem
cells view the recipient's body as foreign, and the donated cells/bone
marrow attack the body). Well, I'm no stranger to having my body attacked from within, so why not go for it, right? There's good news and there's bad news. There's rarely anything that solely exists with good news, so again, why not go for it?
Twenty percent of the people who receive this transplant have been cured. "Cure" is not a word that has been used during the whole of this process, so that's positive. Sixty percent of the people had a remission, but ended up having to continue treatment. Basically, this is where I presently sit. The last twenty percent of the folks died in hospital after undergoing the transplant. That's not fun. Also not fun is that Dr. H said, "twenty percent... maybe thirty percent".
What on earth would possess me (us) to proceed when the numbers are so iffy? I rationalise it by saying that I get to choose the way I die... from a certain point of view. The end of everyone's story is death, so we all share that end point. For me, I get to choose being cured and having a longer life, a shorter life with the annoyance of constant treatment, or a very short life in which I was brave and died trying. It's nice to feel like I am in some way in charge of this stupid disease.
So, should I not die in hospital (and I certainly hope that I do not), what follows? They will monitor me for 100 days, including the days I am in hospital. Once I am released, I will need a caregiver to be near me to make sure I don't have issues during the balance of those 100 days. I will need to take anti-rejection meds until they feel it is safe for me to come off of them--or forever. I will be able to work from home for very brief periods of time, so I will not completely be without an income, but it certainly won't be enough to live off of, so we should probably explore a short-disability benefit. If one isn't available, well... we will explore a plan B, whatever that may be.
Why else would I be considered for this highly risky transplant? The team feels that I am the perfect candidate for this. In some fashion, my head treats this as being chosed for the astronaut programme. They think that my "youth" (50 years is young and I am OK with that), my level of fitness, my determination, sense of humour and my overall attitude will carry me through this better than a it would a lot of other folks. That's encouraging and I will accept those reasons as I do pride myself in my resilience and attitude.
And there it is; sometime in the next year (most likely), I will be on yet another adventure. I have finish up by saying that I am fascinated by what this transplant will do. The donor cells will repopulate my bone marrow, thus creating a whole new immune system with a new genetic identity that is not my own. The new immune system will recognise the cancer cells, which carry my genetic imprint on them, as foreign bodies and attack them. That's the potential of the cure! My skin, hair and organ DNA will be my own, but the DNA in my blood and marrow will be identified as the donor. How insanely science fiction is that?!
Anyhow, my match would be Asian (preferably Japanese) and Caucasian (preferably Welsh / Scottish). If you know of anyone who is in good health and could be a match, please have them click through to the link below.
As always, stay tuned to this space for more information.
And if you'd like to be a bone marrow donor (and there is a shortage in the States), please click through to BE THE MATCH.
Anyhow, my match would be Asian (preferably Japanese) and Caucasian (preferably Welsh / Scottish). If you know of anyone who is in good health and could be a match, please have them click through to the link below.
As always, stay tuned to this space for more information.
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And if you'd like to be a bone marrow donor (and there is a shortage in the States), please click through to BE THE MATCH.
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