Wednesday marked the fifth anniversary of my CLL diagnosis. I am now entering year six of a journey that, according to survival statistics, should last another two to nine years. At which point I will become permanently out of print. Crossed out by the Big Blue Pencil. Remaindered at the bookstore in the sky.
Unless, of course, I get lucky. Which, the statistics show, can also happen.
My feelings about chronic lymphocytic leukemia are a lot different today than they were five years ago. Then, it was a challenge that demanded my full attention: How can I get a grip on the unfathomable to outwit the unthinkable? Now, the adrenaline response to diagnosis is gone. The war of attrition has set in. CLL is less of an imminent threat and more of a lethal annoyance.
This has led me to conclude that, as much as I can, it’s time to get on with my life. In the words of that sage philosopher Doris Day, “Que sera, sera. Whatever will be, will be.”
Over the years I have learned what to expect. I know how the disease progresses, how drug resistance develops, how I respond to therapy, how clinical symptoms have impacted my life. I have seen the pace at which new therapies come along and I know that at the end of my CLL journey, barring something fairly miraculous, there will be a transplant of some kind. And that it will probably either cure me or kill me, and that nothing I do can control the outcome with certainty.
I am along for the ride. Over time I have come to accept my situation, and very little good can be said about it. CLL is a bitch. But I am getting used to it. As the days go by and the crises come and go, it feels less like a roller coaster and more like a bumpy road. And so the experience has taken on a more even feel. It’s not new anymore. It’s just that thing you do, that thing that happens to you.
I used to look for silver linings, and I suppose there have been some. For example, getting to know other people affected by CLL has brought out my empathetic side, made me more comfortable speaking the language of emotion and acknowledging pain and loss. I learned through this blog and online forums that I could turn my experiences into something that might be of help to others. When things have gotten bad for me personally, I have found an inner strength I didn’t know was there, an ability to hold things together and stay focused and not freak out. You could say that I have grown as a person. The shorter my life threatens to become, the fuller it is.
But this is a war of attrition, and that takes something out of you. The silver linings usually pale in comparison to the clouds. There is a slow drain of resources: emotional, financial, and in the form of dreams deferred and plans altered. Five years ago, CLL had an air of unreality about it; now it has been around long enough to have impacted almost everything in my life. It is impossible to deny.
After five years, I have also learned that knowledge is imperfect. For example, in the time since my diagnosis, FISH testing has become part of the diagnostic and prognostic workup. But the test looks for just a few things, and many lay hidden, unseen players in the game. There is a lot that the experts still don’t know about CLL, and the learning curve requires patience; the first chromosomal abnormality (Trisomy 12) was discovered the year I graduated from college, 1979. And in the words of Dr. Terry Hamblin, “We still do not know what it means.”
On a more practical level, I have learned that knowledge can only take you so far. Understanding the tests and treatments and all that is essential. But how your disease progresses, how it reacts to therapy, these do not always follow the rather incomplete book. CLL is notoriously idiosyncratic, and there’s a lot of trial and error when it comes to managing it. There is no way to know for whom the bell curve tolls. And so I have learned to expect the unexpected.
Over time, I have also come to see that knowledge only takes you so far, for reasons that have nothing to do with medicine. The quality of the CLL experience is something that evolves in part from your reaction to it. I am talking about the emotional and spiritual component, what the clouds and their silver linings, the thunder and lightning, does inside of you. There’s who you are going into this and who you become.
In my case, I was afraid of death and am now less afraid. I’m not happy about it, mind you. But I’ve gotten used to the prospect.
I have also found some balance. A CLL diagnosis comes as a shock, and the ongoing experiences of getting test results, visiting doctors, being treated and then relapsing, all these things can create a life lived on a medical treadmill. This was the case with me, and then I realized that when the treadmill slowed, the sun was still rising and shining on a planet that contains more than B lymphocytes. The beauty in life began to reassert itself.
For a time the world is CLL, and then it becomes the world again.
Knowledge only takes you so far. The whispering in your soul takes you the rest of the way. This is where CLL meets the cosmos. Where a terrible burden meets its context. Where the stars float and you do, too, set loose by the unbearable lightness of being.
CLL is nothing more than one possible end to your story.
So keep writing.
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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