I am one year old. Well, my immune system is, anyway. It is
weird to even write that, because I remember the day too vividly for it to be
one year ago. I remember sitting in the hospital, sick and exhausted from
vomiting non-stop for 48 hours straight (thanks to chemo, radiation and
multiple drug cocktails), watching as they hooked up a huge bag of bone marrow
to my central line. A bag of marrow from some mysterious heart-of-gold stranger. My husband and I watched in silence as the blood slowly,
slowly made it’s way down the line into my body. I prayed that this blood would
get along with my body, that my donor and I would live in harmony, that I
wouldn't be permanently disabled from side effects. My musings were disjointed and unequal in gravity. I wondered if I would get
new allergies. I wondered if it would be my last week on earth. I wondered if
my celiac would go away and I could eat bread again. I wondered what exactly
would happen to me if the new immune system didn't graft. Would I die right
away? Would it take a few days, a few weeks? I realized that I had not said a
proper goodbye to my children. Of course I hadn't.. Because I expected to live.
All of these things went through my mind as the IV drip, drip, dripped into my
veins.
One year later, I am healthier than I ever expected to
be. While I still have challenges and take medications, I am able to be a
full-time mother to my children. I do the things that I love. I was enormously
blessed not to have suffered from any significant graft-versus-host disease. I know that many others are
not so fortunate. I attribute it to prayer, a combination of conventional and naturopathic medicine, a perfectly matching donor, and my pre-cancer good health. But
really, you just never know what outcome you’re going to get. So far, mine is
good.
As I sit here writing this, I am eating banana bread, and
not the gluten free kind. Indeed, my doctors were right. The transplant
wiped out my celiac disease. (Celiac is an autoimmune disease, so when you replace the immune system, you wipe it out. Doctors are actually doing clinical trials using BMTs for all sorts of autoimmune diseases, but because the risk of mortality is so high, obviously the condition has to be pretty severe to warrant it.) But all that aside, I can eat bread. All it took was being decimated by the
most toxic chemo-radiation one-two punch the human body can stand. Real bread. Heavenly. (And yes, I know it is somewhat ironic
that just as everyone is going gluten-free I am going pro-gluten, but whatever.
It doesn’t make me sick and it is delicious.)
It is certainly not something I would recommend as a celiac cure, but at least I won something out of this whole nightmarish experience. Sandwiches.
So two days ago, we partied. I invited all the people who had
supported and cheered for me over the last year (well, not all – there were people all over the world and they
couldn't all be there!) and we gathered in a beautiful park and ate and laughed
and chased small children around. It was a good day to be alive. It’s hard to
imagine that I almost didn't live to see it.
I still don’t know what’s coming next. I am still terrified
of a relapse. I regularly look at pictures of myself and inadvertently think, “Oh, that’s a
good picture for my kids to remember me by.” I keep
journals for both of my children of things that I want to tell them when
they’re older, or things that they've done that only I will remember, just in
case I don’t get that chance. I make every big decision with this thought: “If
I’m in the hospital a year from now, will I regret this choice?”
While physically I feel fairly fit and energetic (until 7pm, that is, when I crash hard), mentally I struggle with concentration and focus. I feel permanently scatter-brained. (My husband tells me I was always a scatter-brain, I am only just noticing it now because I was too busy before. He may have a point.) I am hoping that will fade with time, otherwise an academic life is never going to be in my future. But maybe that's OK.
And even though I wish this whole screwed up year had never happened, this experience has opened me up to the tragic and courageous
world of people scarred by cancer. I don’t say “touched” by cancer because
cancer doesn't do that. Touch implies some element of gentleness. A disease
that takes down three week old babies does not touch. It maims, it attacks, it
scars. Cancer is not a gift. It is a serial killer.
Throughout this experience, I have had the honour of meeting
amazing people who fight back. I have met courageous little boys and tenacious
mothers, brave fathers and gritty siblings. They rally and cry and hug and endure. They laugh at things that really aren't funny. But sometimes there is nothing else to be done. They know how precious
life is, and they fight for it. And I will stand alongside them.
Because this fight isn't ending any time soon.
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