Today is the third anniversary of my diagnosis with chronic lymphocytic leukemia. It feels like any other day, which is only appropriate considering that CLL has become part of my daily routine. There were times, in the beginning, when I feared I wouldn’t live another three months. And there were times when, after visiting uninformed doctors, I felt confident that I would live another thirty years.
I am not sure how it will all pan out, but I am pleased with the three-year increment. It is a bite-sized stretch of time, long enough to feel like a long time, short enough to plan for. I have lived three years with CLL. I have every expectation of living another three. I can see myself getting from here to there. Flying anvils may yet do me in, but when it comes to CLL, I am not beaten.
If wondering how I will make it another thirty years can be depressing, knowing I will make it another three is reassuring. And if three years from now I can see a clear route to three more, then maybe I will make a long journey in small steps. Perhaps I will surprise myself one day at how far I have come in increments of three.
The next three years will no doubt be different in some ways that I cannot imagine. But I do know that the unending process of figuring out if and when to treat the disease and with what will be part of the picture. I am used to this landscape, less afraid of it than in the past but rather more annoyed at the time and energy it takes to navigate and negotiate. In most cancers you fight, you win or lose, and you're done. CLL is like the movie Groundhog Day, in which the main character relives the same day over and over. You fight, you buy some time, and then you have to do it all over again. In some ways, having CLL is akin to the labors of Sisyphus, the king in Greek mythology who was forced to push a boulder up a hill for eternity.
CLL is not complicated, but there is nothing simple about it. It is considered to be a “systemic disease” because the mutant B cells are everywhere, but it is systemic in more ways than one. It is systemic in the time, money, and energy it takes, in the stress and anxiety it causes, in the well-laid plans it disrupts.
Perhaps the next three years will see an evolution in the way Marilyn and I cope with the totality of what it means to have leukemia. Perhaps I need to learn to better compartmentalize CLL’s role in my life, to put it away in the attic more often, to practice the old adage “out of sight, out of mind.” Marilyn and I deserve some time alone without the elephant in the room. Marilyn especially does, for this is harder on her than it is on me. CLL is something I have made and that I have to live with, and that I have become familiar with. If to me it is an intimate enemy, to her it is an alien who threatens to steal me away. We see it from different vantage points, and whenever we go traveling and get away from it for awhile, we both see that it takes a great deal from us. So in the next three years I hope we can learn to live better with it than we have, by whatever strategies make sense.
And that is the point: to live well. I do not mean sipping champagne on the Riviera, though that would be nice. I mean living with a good degree of harmony, in comfortable surroundings, doing things that are, on the whole, more life-enhancing than stress-creating. This is all the more a challenge given CLL, but it is not impossible.
Perhaps that is the lesson of the last three years: Nothing is impossible, and that includes the prospect of beating this disease. I will take that thought to heart, three years at a time.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
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