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Sunday, July 31, 2011
Where do I even begin? Last post was in January. So much has transpired in recent months, weeks, days. Guess I best back up a few steps. This might take a while, but bear with me because, at the end, I finally have something important to say.
Flashback
Back in May '10, I reported that my doctor advised that my only viable treatment option was the dreaded donor transplant. Over the next months, as he pressed the subject and asked why the aversion, I told him, doc, it's like James Brown once said (albeit in a fully other context), "It's better to die on your feet than to live on your knees."
Well, back in fall '10, in one of our bi-weekly check-ins, he basically told me that, the way he saw things, with the boat's progression likely to continue exerting more pressure on my main artery, I was only going to be able to pursue my James Brown lifestyle for, say, a year or so. When he put it to me that way, with a relative date attached, I started reconsidering. Eventually, I cancelled my order for the silken, custom-tailored, super-funk-machine stage cape and decided headstrong on the transplant.
Took a lot of internal reflection, talks with friends and family, and yet another confirming second opinion from one of the U.S.'s top specialists treating my type of illness. He even noted that one of the 4 potential donors on my shortlist (of the 18 million people in the worldwide DB) was what he would call an "ideal match" - therewith tilting the odds a good bit in my favor.
So after a few rounds of chemo to keep things in check, a few CT scans showing boat size relatively stable, and another trip to the states end of June, this time with Sammy and just hanging with family, I was all geared up and frankly downright anxious to get started, go through with this thing, and get on with a new life.
Game Plan
The doc had contacted the folks who run the U.S. donor DB (for simplicity, I'll just say "Red Cross") for them to contact the donor and propose a date when the donor was available. Red Cross then comes back with a counterproposal date, which my doc then vets with the clinic's bed planning. This can go back and forth a few times, but my doc told me to expect a timeframe of around August.
From that point, I'd be in quarantine at the clinic for about 2 months for the transplant, then back at my apartment in "home quarantine" for another 2 or 3 months, then lots of follow-up appointments, and gradual recovery. So, all in all, if all went without complications, 8 months to a year until I could start getting back to work gradually.
FAQs
What exactly is the donor transplant? It's a stem cell transplant. So what's a stem cell? Stem cells are your white blood cells, which originate in your bone marrow (which is why it's also called a "bone marrow transplant"). From your bone marrow, they work their way into your blood stream, where they serve as your immune system, fighting off foreign viruses and bad cells. Their other job is to regenerate every single cell in your body. Continually. They're doing it all the time. (Take a second and say, "thanks, guys," because they do a lot of work for you.)
How do they transplant? First they gather the donor's stem cells, which involves the donor going to a couple of doc check-ups/physicals, about five days of self-injecting steroids that cause even more white stem cells to temporarily come out from the bone marrow into the blood stream, and then spending about 4 to 8 hours in bed at the Red Cross with an IV in one arm and IV out the other arm. In between the IVs is a centrifuge (for Python fans, "the machine that goes 'bing'") that filters out the largest, strongest of the white blood cells, and gives the rest back.
In a matter of days, the donor's white cell count is back to normal. Aside from headaches and a feeling of stiff joints, an effect of the steroids, the bed time is the only other inconvenience. (By the way, the difference to the steroids that athletes use: their steroids draw red blood cells temporarily out of the bone marrow and into the bloodstream. And it's your red blood that cells carry oxygen to your muscles, for better physical performance.)
Anyway, it's a cinch, really, the extraction part. I know because I did it once myself, when years ago they extracted my own white bloods, the biggest and strongest, in order to give them back to me in the "autologous transplant" I underwent years later. Actually, due to the umpteen chemos that I had had prior to the extraction, was a bit more complicated and time-consuming for me. But a friend of mine confirmed the comparatively minimal inconvenience for normal folks as she recently donated stem cells for child in Portugal whom she'll never know and vice-versa. (Each country has different laws regarding contact between donor and recipient.) But she's a hero nonetheless. She was some child's only hope, and she answered their call for help.
Now to the transplant. For me, I get a few days of high-dose chemotherapy to completely eradicate my stem cells, i.e., my immune system and my body's ability to regenerate cells. In computer terms, my laptop gets a new image. Once my bone marrow is completely blank, I get the infusion of donor's stem cells, which within one day will work their way into my bone marrow and start reproducing. As they reproduce, they start creating my new immune system. And they also start "grafting" with every cell in my body.
The aim is that they identify the tumor cells and wipe them out. The other aim is that they don't wipe out anything that's supposed to be there, i.e., that they play nicely with my liver, lungs, kidneys, skin and so on. And also that any of these internal and external stakeholders don't reject the new cells. That's why you want to have a good "match": The greater the similarity in DNA traits, the greater the chance for "making it," recovering without complications, and the greater the ensuing quality of life.
Yes, it's amazing. Yes, it's scary. That's why it took me so long to warm up to the idea. Took a lot of emotional, mental, spiritual energy to set my mind on this, and to be fully resolved to do it, with the intent of getting rid of this boat for a long, long time - up to 20 years (as long as they've been counting) and more.
Wait, What?
So that was the plan. Until Friday, when my doc told me that my "ideal match" got cold feet: She's not going to donate, and her name has been removed from the database. [Placeholder for expletive of your choosing, and probably a "Why-TF not?"] Not for medical reasons, personal risk or anything; Red Cross would have cited that. Just that, "in consultation with her family, she decided against it." [Placeholder: further expletive of your choosing.]
Whatever expletives you chose, yup, agreed. But I'm trying not to be angry or resentful. Those are bad emotions, and ones which surely didn't help me avoid this whole health mess in the first place. Actually, I feel sorry for her. For the rest of her life, any time she sees a Red Cross sign, hears the words "cancer" or "donation," or a musically obvious "In the Air Tonight," somewhere in the back of her conscience, a little voice is going to say, "You once said 'no' when someone asked you to help give them a chance at life." That's one tormenting hell of a Tell-Tale Head for your shoulders to schlep around each day for the rest of your life. Yup, that would suck. Good luck to ya, ma'am.
Cut. Take 2.
As for me, the new plan is to run another check of the donor DB, just in case one of the handful of thousands of new donors since the last search is a better match than choices 2, 3 and 4 on my list. My doc will make his recommendation. Will run the list by the specialist in Houston again, as he didn't say anything about the other candidates after pinpointing the ideal one. Then we start all the back and forth with the Red Cross again, and the next-best donor. Thus, it's now looking like September or maybe October for the transplant. Maybe another chemo round to keep the boat at bay until then.
The worst part of this setback is that one of the things that had taken me over the hump in a long thought process, helped me muster the confidence to do this, was knowing that I had an ideal match, and therewith the best chances for success. Mentally, psychologically, emotionally, I'm back to square one.
But I still got more of another thing that got me over the hump: a change in attitudes and latitudes. Years ago, when I first started really confronting the ultimate fact of life, I thought I was doing myself a favor with things like, sitting in my office, listening to Sammy and her mom upstairs, reading and laughing, and closing my eyes and imagining that it was years later, I was gone, and there they were: reading, laughing, having fun. Time healed wounds. Life went on. Thought I was helping to pre-process emotions that I'd be dealing with more and more. Turns out, that's not a helpful approach. At least, I've been going with a more inspirational one.
I started reading books on the power of the mind and meditation to transform positive energy and emotional healing into the physical. I've learned the importance of visualization, i.e., not just hoping for a better future, but closing your eyes and envisioning that future - Where are you, your daughter, your friends and family in 5 years, in 10, in 20? How good does life feel then? See it. Experience it. Live it, already now. Maybe not a lot of you can relate to this. But you can probably relate to daydreaming. That's pretty much what it is, just focused daydreaming. Well, probably a lot of you can relate as anyone who's heard this story has been able to. It's a story I heard from a friend of my mom, and again recently by a friend on facebook, and it's probably been told many times over:
Two Wolves
One evening a Cherokee elder told his grandson of the battle that goes on inside people. He said, "My son, it is a battle between two wolves. One is Evil. It is anger, envy, fear, sorrow, regret, greed, arrogance, resentment, inferiority, lies, false pride, hate, superiority and ego. The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."
After some reflection, the grandson turned and asked his grandfather, "Which wolf wins?"
The old Cherokee turned and softly replied, "The one you feed."
A Call for Help: Be the Match
Take some time to feed the good wolf: Get registered in the worldwide donor database. (Colleagues in Germany: More to follow on a local initiative.) Who knows, someday, you may be called upon to give someone a shot at beating leukemia or lymphoma. You can order a self test - as my brother, sister and many of you have already done - on the DKMS site in Germany or NMDP site in the states. The test runs around 50 EUR / $ to cover the lab costs and administrative costs in getting your data in the DB. There are swab (Staebchen) tests, in which you simply swipe a Q-Tip-like swab inside your cheek and drop it in an envelope. Or you can go in for a blood test.
And so, for now, I'll leave you with that plea for a world unfortunately full of those in need, and a humble plea of my own to not worry about the dude, as the dude abides.
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