Stem Cells, the Givers of Life

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I have started this blog entry three times, wondering what to say. Ended up with so much to say that I will be merciful to you and break it into two parts. There is not much to say about the last stay in the hospital. It had all the same qualities as the last time. Hard it is, there is no getting around it. I owe my life right now to the medical staff at UW Medicine, and the Seattle Cancer Care Alliance. To the nurses, especially, I bow with respect and deep gratitude for all that they do and endure. No matter what I say about the rigors and sometimes, the horrors, of being under the chemo “therapy” regime, I cannot deny that without it, I would not have lived to see this budding spring.

Somehow we thought that chemo was the main event of this disease. But it’s not. It is the stem cell transplant (which I believe has largely replaced the bone marrow transplant) that is the ticket to future health. Chemo is the hammer that takes the disease down. Transplant ensures the success of the endeavor by giving your body a new immune system.

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Stem Cells, the givers of life

We had no idea when we checked into the hospital in late February of the startling and complicated world of stem cell transplants. That seemed far away and all of our energies were concentrated on getting through chemo, not to mention setting up a whole new world in Seattle. When the process of trying to find a stem donor began, it came with a bang, with a rush of new information and not a whole lot of help from any quarter in actually sitting down and explaining the total intricate procedure.  If I were German, my chances of finding a match would be great, as so many of them sign up. But this is where the complex dance of my globe trotting ancestors steps in. Turns out being partially Latino or Hispanic—a population that doesn’t have very many donors—mixed with Scottish/Irish/English—the very genetic pieces that make me “me” lead to a very small pool of potentially qualified unrelated “Full match” donors, on the scale of 10/10. Then they have “mis-matched” donors, meaning that they match on everything except one allele, put that puts your match to 6 to 9/10.

At the same time, breakthroughs in using cord (umbilical) blood from delivered babies is making news—miracles, really. At no cost to the family, and no obstacles other than donating the umbilical cord which is normally discarded, people of all ages who had no donor matches—and therefore no chance to live—are getting successful transplants. So, when the time comes, I could be given life from a baby. This thought makes me smile, though it is not the stem cell team’s first choice. It truly is a remarkable time for a disease which children and adults share. When my droll Swiss  Doctor called me sturdy, in terms of taking the chemo with no game changing drastic effects, and my daily walking, it also made me smile–though all that can change in an instant. I hope for a new sturdy immune system, like my old one, as they will kill mine off and replace it it with a new one.

IMG_0060So, I think—this is what they don’t want to even get into in those first desperate days to kill the leukemia with the chemo arsenal. You couldn’t take it in. And it all the uncertainty and possible impediments could make you lose the belief that all this ghastly stuff you are going through will lead to the place you want to go. Now they want it on a fast track but that still means 1-2 months before all is said and done. And that’s not counting the recovery, or the possible complications.  Now the one thing I know as the days roll by is that  . . . we just aren’t going to know until it’s happening.  One day at a time. When the world is fueled mostly by planning and calendars, living one day at a time has the effect of creating a time out of time. I walk slower, and observe more these days. Knowing how much injury and waste is aimed at this fair planet of ours, I also know for sure that the faster we go, and the more mindless we get, the worse it is for the planet. Thích Nht Hnh talks about touching the earth gently and mindfully with our feet. Not a power walk.

I keep coming to the same conclusion: This is not the worse thing that could happen to me. Quite simply, imagine being the parent of a twenty-something who has my condition. I’ve met two. And then go from there to all the other uneasy worse scenarios your vivid imagination could cook up. Anyone with knowledge of the world knows that there are far worse situations that could confront a person. And I am left with a single astonishing and obvious truth. Life isn’t safe, it doesn’t come with a guarantee or a warranty and all the seemingly healthy people walking around me are at risk, all of the time. Death awaits everyone. And we mostly act like this isn’t so.

Part Two to come tomorrow. It’s a lot to take in.

11 comments on “Stem Cells, the Givers of Life

  1. You are amazing, but I always knew that.
    My son Paul, a stem cell researcher, has a blog and just had his
    book published and I proof read it. The field gives hope, but your
    disease is the first acknowledged legitimate
    use of stem cell treatment. Can’t wait to
    read your next installment.

  2. The depth of your beauty is breath taking….life nourishing. Thank you, my lovely Shann and Steve, Elena and Mariya.

  3. So moving to read your words, how you put your experiences together into a whole for us all to learn from. We got to spend time w/ your man last night at L and S’s gathering. Missed you there, tho felt you in spirit. Hugs an love

  4. Shann, I just found out from Mitch’s sister that his grandmother on his mom’s side was Scott-Irish-Dutch. His dad was full Mexican. He would very much like to pursue the possibility of a match. Do you know if it’s possible to get the swab-thing here at Lopez clinic??? Love, Susan

  5. What Lenore said. I so appreciate your putting into words what must be so difficult for you to even process. You are in my heart. Love love love.

  6. Just answered my own question about the swab-thingy. BUT! Is it possible that Mitch could be tested and checked for a match without having to go into the pool? Is it possible that if he were a match that he could donate directly to Shann?

  7. Hi Shann and Steve, thanks for telling us re the need for stem cells and donated umbilical cords. Nadia and I would like to encourage donations of umbilical cords. If someone want s to do this, how do they and if they might be a match for you Shann, how does it get ear mm arked for you?love to you both. X

  8. I’m not surprised to hear that your doctor referred to you as “sturdy”, I’m sure you’ve got a much better than average fighting chance of recovery, especially with your powerful positive attitude and loving respect and joy for the natural world.

    Stem cells are miraculous. They’re also the best hope for a cure for Geoff’s Parkinson’s Disease, so we watch stem cell developments with a vested interest.
    The main problem with PD seems to be getting them across the blood brain barrier so they can grow new dopamine-producing cells. Interestingly, I’ve read that the way in might be through the top of the inner nose.

    Shann, I am more than half English/Scottish/Irish on both parents sides, and German and American Indian (just found the Indian link a year ago) on my dad’s side. I don’t know if the American Indian link would help, but if there is any small chance of a match between us, please know that I would be glad to be tested here, and would fly over there to give you whatever might help.

    Might even be able to throw an umbilical cord into the mix – Erin is expecting another baby (grandma again)! She has American Indian in her from her dad’s side too.

    I know its a very long shot, but I would dearly love to come to the rescue. I’ll be willing a suitable donor to be found soon, whether its me or some other person lucky to be in the position to help. Much love dear friend.

  9. I think your writing has changed. Not surprisingly. More concise. If possible, deeper but lighter. Sharing thoughts that I can’t quite verbalize well. Life, love, existence. I know I have not called, I am not sure whether that is a bad thing. I don’t know what to say I guess. Don’t think I am so up my own ass that I don’t think of you all everyday. I am here. I always will be here for you. love chris

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