A decade ago, I was diagnosed with acute myeloid leukemia and underwent aggressive chemotherapy and an allogenic stem cell transplant. Though I still have complications related to my cancer, I’m thankful for what I still have.
I’m still alive. This was not a given 10 years ago, when I was diagnosed with an aggressive case of acute myeloid leukemia (AML).
The usual chemo for AML was applied, but after a few weeks of remission I relapsed, confounding my oncologists. They said if I couldn’t get back into remission in preparation for a stem cell transplant, I had perhaps only a few months to live. I went to the Fred Hutchinson Cancer Center in Seattle on the advice of a friend, bless him, and received a chemo protocol called G-CLAMS. It included 20,000 mgs of statin which had the benefit of socking in the chemicals, especially in patients who had the FLT-3 mutation for fast relapse.
The great oncologist Dr. Elihu Estey, now deceased, said “This chemo has a 15% chance of killing you. But your blood now has 60% blasts (leukemia cells), so you have a much greater chance of dying from leukemia than the chemo.”
I survived the chemo (clearly), and waited three months for a stem cell donor to be found for transplant. There were no relatives for a good match, so I had to depend on the kindness of a stranger — an unrelated allogenic donor. This generous person was not a perfect match, but I couldn’t afford to be choosey.
And so, we come to graft-versus-host disease (GVHD), a syndrome where the body rejects the new cells thar are introduced. I have chronic, high-moderate GVHD, which thankfully has not affected my internal organs. But my eyes and mouth are another story.
There is a moment in “Lawrence of Arabia” when he snuffs out a match flame with his fingers. A friend then tries the same thing and cries out, “OWW, that damn well hurts! What’s the trick?” To which Lawrence replies, “The trick is not minding that is it hurts.”
Swell. But my eyes and mouth hurt, sometimes quite a lot. And I mind. I wasn’t really a good candidate for the stoic discipline, so I had to find a more secular way to handle it.
My oncologists put me on a regimen of medication (prednisone, in particular) to control the inflammation from GVHD. There are several other meds to buffer my immune system since I am immuno-suppressed due to the GVHD. I take these twice a day and will probably continue for the rest of my life.
With these drugs come some quite unpleasant side effects. I will not report my entire litany of woe, because you’d find it depressing to read, and I’d find it depressing to write. Let me limit it to a hip replacement, retinal damage and ambulatory problems involving ankles.
These are probably due to my ongoing prednisone usage.
But I still have much pleasure in my life, impediments notwithstanding. I have the good fortune to have a wonderful wife with whom I still share some great adventures. She offers me help when I need it, and I’m not so bone-headed to deny needing the help. We go out quite a bit to shows and movies, and I bring a bottle of viscous lidocaine to restaurants to help me get through a meal with minimum pain. I also take yogurt daily with live and active bacteria (no gelatin or corn starch) to keep my GVHD in the moderate range.
However, there are occasional moments of great sadness as to what I have lost. A sage once said, “The process of living is managing loss.”
Eventually we lose everything, and I am grateful and try to celebrate what I still have. I know there are many others who have much less, and are substantially worse off than I am. But that doesn’t diminish my loss and ongoing pain as I proceed through the rest of my life. I can often re-focus my attention to something compelling and commanding to distract me from the pain and loss of previous abilities. But not always.
My advice is don’t feel guilty for having occasional sadness as a survivor of this disease. This will happen, however try not to wallow. It doesn’t serve you and is unpleasant for friends and family. I often feel like crying but don’t have working tear ducts anymore, so there’s some dark humor in that.
Maybe a relative will be a good match for you, and you won’t have GVHD. I will be envious. But many will suffer some form of it with an allogenic transplant. You will have challenges and setbacks and disappointments and loss. And possibility and joy and perhaps a new appreciation of how rich life can be. And you will have the continuing chance to live!
Written by Robert Trebor for CURE Today ~ May 11, 2023