Chromosomes, Monosomies and Miracles

Among cancer’s many gifts to me (such as bruises, baldness, and black humour), this disease has also provided me with an entirely new vocabulary. I now know impressively big words like neutrophils, posaconazole, and the infamous thrombocytopenia. (Try that one out at dinner parties.) But by far the craziest thing I’ve learned in the last few months is how bone marrow transplantation actually works.

When I was first diagnosed with leukemia, I was obviously devastated. But after some research, I thought that I would endure several horrible rounds of chemo, lose my hair, and then put this all behind me. Unfortunately, that was not to be the case. A few weeks after my diagnosis, I found out that I have a monosomy. That means I’m missing a chromosome, and a fairly important one at that. So while the vast majority of human beings have 46 chromosomes, all of them quite critical to existence, I only have 45. I was not born this way, as a Chromosome 7 deficiency in utero causes all sorts of birth defects. Instead, at some point, somehow, for unknown reasons, my DNA started to self-destruct. You do not need to be a genetic expert to figure out that, without intervention, this will end badly.

With a little research, I quickly discovered that the prognosis for leukemia patients with a Chromosome 7 deletion is very poor. I fall into the “unfavourable cytogenetics” category. Several rounds of chemo might put me into remission, but not for long. The doctors told me that a bone marrow transplant is essentially my only shot. But it is also no guarantee. I found this annoyingly vague. What did that mean? How much more time would I get with this risky procedure? Five years? 10? 20? I’m only 32. I greedily want 50 more years.

I know, of course, that no one is guaranteed that kind of time. No one is even guaranteed a tomorrow, cancer or not. I also have a lot more people working to ensure that I’ll live another day than the average person does, so I take some comfort in that. (Seriously. Do the rest of you have multiple hematologists, an army of nurses, a naturopath, dietician, social worker, chiropractor and a counsellor? I sure hope not.)

Then I started researching bone marrow transplants and completely freaked out. Somehow I had never thought of it as such a dangerous and completely mind-boggling process. (Well, let’s be honest. Before this diagnosis, I had never thought of bone marrow transplants at all.)

For the donor, much to my relief, the process is fairly low risk. The stem cells or bone marrow, depending on the procedure, replenish themselves in a few weeks. Many donors go back to work the very next day, and they get to say they spent their day off saving someone's life. In my books, that is pretty incredible. (See www.onematch.com.)

For the recipient, however, the process is quite different. The chemo that they give you before a transplant is extremely toxic – far more vicious than what they usually use for cancer treatment. It completely kills off your entire immune system. Essentially, it kills you. In fact, the chemo kills off your bone marrow so thoroughly that it cannot come back. And then, in some cases, they also give you some radiation to finish things off. (I guess there’s dead and then there’s more dead.) After all of this, in order to survive, the recipient needs someone else’s bone marrow or stem cells.

Now you know why I freaked out. And it gets better.

In an organ transplant, you receive a new organ and your immune system can reject that organ. But in a bone marrow transplant, you receive someone else’s entire immune system. That means you get their blood type, their immunity, and even their allergies. The way I see it, the process essentially splices two humans together. (Disclaimer: This is my totally non-scientific interpretation of a very complex process.)

After the transplant, I will no longer be missing Chromosome 7, but it won’t be mine. I’ll still have part of my DNA, but I’ll also have someone else’s. A more nefarious person might consider committing a serious crime right before the transplant. Afterwards, the perpetrator would have different DNA and a new blood type – very difficult to track down. (Good thing I’m not nefarious.)

Once the transplant is done, instead of the risk of your body rejecting a foreign organ, this new immune system can reject and attack you. So with a few hours of research, I learned that the process designed to save my life could also kill me. Great. Didn’t someone once say that cancer was a snap? No? I must be thinking of a different four-letter word.

I also discovered that the majority of people who need bone marrow transplants never find a suitable donor, especially patients who are not Caucasian. Yet after all my bad luck with the cytogenetics, I finally got some good news last week: my doctors found multiple donor matches in the bone marrow registry. Hallelujah, baby! Scattered throughout the world, there are people who are as genetically close to me as my own brother. Not only that, but somewhere along the line, these people decided to sign up to be donors. And now at least one of them has been confirmed as willing, young, healthy, available, and a perfect match. This anonymous person, without knowing me at all, with no promise of rewards, accolades, or any sort of payment, is going to save my life.

Miraculous? I think so.