I’m no longer in remission.
Actually, I haven’t been in remission since early February. But I had just had a horrific crash (which you can read about here: http://triumphtraining.com/blogs/blog/7233404-reality-crash.) So when my BCR/ABL tests came back, I thought the trauma of my injuries might account for the slight increase in levels. Determined to convince myself, I looked back over my health records and found a BCR/ABL from 2009 where my numbers jumped up but dropped back down to undetectable on the next test. An anomaly, my doctor called it. Yet part of me knew that just because my cancer can’t be found doesn’t mean it’s not there.
Still, the latest test showed a minor bump. From undetectable to .001%. The test from 2009 saw an increase to .009%. So I quieted the voices which try to champion doubt in my head and waited to see what April’s results would show.
Two in a row. A minor increase. But for the first time since I had gone into molecular remission in May of 2006, the numbers were going the wrong way.
My hematologist advised me to increase the chemo I take every day back to the standard dosage. For years I had been weaning myself down. Ever since my liver enzymes exploded off the charts as a plea against the onslaught of chemicals they had to face daily, I had decided I wouldn’t let the treatment kill me. Besides, the healthier a person is, the greater a response that person will get from a particular intervention. So I followed my intuition and gradually decreased my dosage after each BCR/ABL test proved my theory to be true. But now my belief was starting to crumble.
And that may have been the hardest part. Everything I stand for centers around belief in the body. Belief in the mind. It’s what I preach every day. It’s the foundation of my practice. Both with my clients and with myself. I knew the chemo polluted my body. And the fact that I could be so absolutely dependent on it to stay alive sickened me. I felt like a hypocrite—warning people against the dangers of drugs and conventional medicine and encouraging them to trust in Nature and the infinite capacity of the body to heal. Yet I couldn’t even do that myself.
“These pills have Love in them. And that Love is what helps me heal.” This had been my blessing before I swallowed the orange colored tablets each day. I wanted to put the power not in the pills but somewhere else—anywhere else. Yet when the follow up results from July’s BCR/ABL came back, I just wished the pills were still working.
But they weren’t.
.004%. Three increases in a row. And though small, it was the rate of increase troubling my doctors. The shelf life for Gleevec was typically three to five years, and I was at eight and half. So that this day had come shouldn’t have surprised me. But I had convinced myself that it was my lifestyle which kept me healthy, not the damn drugs.
Darkness like I hadn’t felt since I was first diagnosed threatened to overwhelm me. I thought of my son growing up without his dad—wondering if he’s reached an age yet when he’d remember me if I'm not around. The massage I give him before he goes to bed at night. The games of soccer or dodge ball or made up ones with made up names. Will Di have enough money when I’m gone? We got life insurance on me right before I was diagnosed, but it’s a trivial amount. How can she handle raising our son by herself? Maybe she’d find someone. And she would deserve so much to find love again. But—God Damn It—who gets whom in Heaven? And while I know that’s not how it all works and my thoughts are probably childish, I can’t help myself. I got dibs!
Diana and I shared some fears in common, but I still felt terribly alone. Maybe some of that was harboring our secret for six months. We hadn’t told anyone since nothing was definitive. And even when the second BCR/ABL gave our worry validation we didn’t tell anyone until the tests came back in July. My family and Diana’s family were the first to know. But others would catch Di in tears when she thought she was by her self, and I can’t lie for shit. Soon word would spread. It already has and many of you have humbled me with your words of support. And though I know healing is found within, the voices of love and encouragement help nourish the soil from which it grows.
We’re off to M.D. Anderson tomorrow to see what our next steps should be. It will likely be a second generation Gleevec—a Tyrosine Kinase Inhibitor like the one I’m on now but more powerful. Similar side effects with a few doozies just to keep you on your toes. A few of which could put you in the grave, but I plan on focusing on what I want rather than what I don’t want. Cause the truth of the matter is, it could be worse. I was supposed to lose all my hair with Gleevec. So if I do on this new drug, I can just blame it on old age. After all, I’m 41 now. Don’t really feel it, of course.
And that’s one way I realize I’m so fortunate. Most people with CML don’t race triathlons. Most Leukemia Survivors don’t win Ironman races or qualify for Kona. Hell, just being able to swim a length of the pool, ride around the block, or run after my son is a gift. One for which I should be grateful. And I am. But I’m not grateful because there are others who can’t. That’s not Gratitude. I’m grateful because I can. To me true Gratitude is predicated on nothing. It stands alone. It supports itself.
The median age for onset of my disease is 65. I’ve gotten a quarter century jump on coming to terms with mortality. Maybe more even, compared to some who never give a thought to their days on this earth. And while there is a gift to knowing that every moment is precious, I sometimes can’t help but long for the innocence of youth. A week ago, Di and I were at the pool with Declan. Tired of introspection, I started looking around. And I saw all these people, many of whom were obviously not the most healthy in the world. All of whom probably had their own stories--we all do. Yet, I bet there were only a handful if any who were giving thought to dying right then. No one should have to bear that. But all of us should get the chance.
To use passion and profession interchangeably is a blessing I never thought I’d have when I was forced to put down the bike. Professional cycling had been my dream. So when that third concussion convinced me to hang up my wheels, my identity was lost. I had lost my equilibrium and couldn’t seem to right myself. Yet through that experience, I realized that it’s my role in this life to show people how to live. I get to do that every day. And each day I wake up I get the chance to pursue my new dreams. My mentor once told me that it may be my destiny to show people how to die, too. And if that’s true, I hope to do so with grace. Not because I’m trying to be something that I’m not. But because I’m grateful for all that I am.
I may no longer be in remission. But I am finally cured.