Never tell me the odds

When my doc initially revealed that her plan for me included a stem cell transplant, I didn't really think much of it. Step one, get some stem cells. Step two, inject them into me. Step three, my problems go away.

Good thing Brooke comes to these appointments and actually googles these things.

The goal is to give me a new immune system, because the one I've got, despite serving me fairly well for most of my years, has done a real shitty job of dealing with non-hodgkin's lymphoma.

That's not a very scientific description, so, here goes. The basics: our stem cells are capable of becoming the various cells in our blood stream -- including red blood cells (which carry oxygen to muscles), white blood cells (which fight infection), and platelets (which clot). Most of these come from our bone marrow. Some diseases inhibit production of these cells, and some treatments damage bone marrow and its ability to produce healthy stem cells. 

Lymphocytes are a type of white blood cell which develop in the bone marrow, and non-Hodgkin's lymphoma starts in these cells. The disease causes lymphocytes to multiply uncontrollably, and they can effectively disable the immune system of which they are a key component, cause tumors, and spread to virtually any organ or tissue. 

In my case, my lymphoma is such that the doctors are convinced that even if the treatment I'm getting now is successful in driving the cancer into remission, it will come back. My best bet to actually "cure" the cancer is a stem cell transplant, the idea being that someone else's stem cells will not produce the cancerous lymphocytes.

The more I learn about the stem cell process, though, the scarier it gets.

I'll receive very high doses of chemotherapy and full-body radiation in order to kill my immune system and any lymphoma cells still kicking around. Then the new stem cells are received via blood transfusion, and they settle into the bone marrow, ideally without trouble. The hope is the new stem cells begin producing not just healthy blood cells, but also kill off any remaining lymphoma cells.

In the short term, the challenges involve the dangers of infection from lack of immune system, and the host of chemo- and radiation-related side effects: nausea, loss of appetite, diarrhea, hair loss, etc. (A-ha, you're thinking "hair loss is no problem for Johnny C." True, but a few weeks without nose hairs or eyelashes is quite irritating).

In the longer term, there are possible side effects like bone damage, infertility, cataracts and an increased chance of contracting other cancers down the road, like leukemia (because of the radiation and the toxicity of the chemo). There's also a thing called "graft-vs-host" in which your body's new cells start attacking, or rejecting, various body tissues it thinks are foreign. The possible impacts of that seem to range from annoying rashes to death. This can actually be a good thing too, though, if the new immune system sees any remaining cancer as foreign and attacks it.

My doctor estimates the transplant might happen in mid-October. I'll likely spend 2-4 weeks in isolation in the hospital while my immune system rebuilds, and then further recovery at home after that. The docs figure I'll be off work until the end of the year, but we'll see about that. I'm starting to go stir crazy and don't want to get all Rear Window.

The stem cell process is much, much easier on the donor. Previously these transplants were done primarily through bone marrow transplants, which involve surgical procedures for both donor and patient. More and more, though, it's being done via the blood. For the donor, this involves a few days of injections to ramp up their production of stem cells, then blood is drawn.

I've had a lot of people ask me if they could donate, and the answer is yes, and no. You can donate (and please do), but not for me. The odds of an unrelated friend being an appropriate match is something like 1000:1. Even my parents only have about a 200:1 chance of being a match. The only person the hospital was willing to test was my sister, a 4:1 chance, but it turns out she wasn't a match. But thanks for trying, Trish. Love ya.

The transplant team here at the Ottawa General is now searching for matches on the international registry, which apparently has about 12 million donors on it from around the world.

And this brings me to the point of this long post. I want to encourage everyone who is healthy and willing to please check out www.onematch.ca in Canada or bethematch.org in the U.S. and consider signing up for the donor registry (particularly if you're a young, non-caucasian male -- ethnicity is relevant when seeking matches, and ethnic communities tend to be underrepresented). You might save someone's life, and signing up is apparently as simple as swabbing your mouth. I wish I had done this while I was able to, before my blood went bad. 

If you doubt the impact such a simple donation could have, take a look at the story of Montrealer Mai Duong, a young mom of Vietnamese descent who recently suffered a relapse of her leukemia. She needs a stem cell donor but has as yet not been able to find a match. So she's embarked on a Youtube campaign to encourage Asian-Canadians to sign up to the registry.

My transplant doc informed me that I really only have a 10-15% chance of dying during this procedure. He positioned this as a positive, but basic math says those odds stink. As I've mentioned before, Russian roulette is only slightly more likely to kill you. 

Going into it as healthy and strong as possible gives you a better shot at success, so that's what I'm trying to do. 

I should probably not have had that second piece of cake tonight...