Published on March 3, 2020
Don’t hate me. But based on what I read and the people I meet, I’ve had it pretty easy these last 12 years. I’ve often said that if the doctors had not told me, I still would not know I have CLL. That notwithstanding, I will not say it is the “good cancer.” Far from it.
I do not have the customary CLL symptoms and complications, nor have I had the side effects from treatments, and I have very few, if any, of the other health issues that people ask about and wonder if they are CLL-related. My lymph nodes have enlarged enough for my doctors to detect them, but at what was apparently their worst, they were never painful or even noticeable to me. To this day, I would not know a lymph node if it walked into the room. If my spleen has been enlarged, it hasn’t gotten in the way of me buckling my belt. Fatigue? Well, I get tired if I keep working in the yard for three hours or so, and frankly, that’s just fine with me. I’m not kept from starting in the yard (not by fatigue anyway), or from getting out of bed in the morning.
On the other hand, when I do get out of bed in the morning, I look in the mirror and think “I have cancer.” And regardless of all the advancements and breakthroughs in treatments, make no mistake, I think cancer is the most frightening word in the English language. I recently spoke to a group, and when I said, “I have cancer,” the word stuck in my throat. For me, CLL is an emotional burden, a psychological challenge.
My wife is my crutch. If you don’t have one, find one. Crutch that is. She buoys me up, and I’m grateful for her annoying optimism. She would say, "You're being a pessimist." And she often does. I would say, "I’m a realist." And I often do. I don’t think the glass is either half-full or half-empty. I think the glass is too big. I got a smaller glass, filled it up and went on about my day, with lower expectations.
I’ve had treatment twice for my CLL. Chemotherapy (FCR) in 2008 and, venetoclax (Venclexta) and rituximab (Rituxan) starting in late 2014 as part of a clinical trial. Even then I only knew I had CLL by looking at the results of my blood tests. I have not been on any medication at all for more than two years now and was MDR-negative when my doctor took my venetoclax from my warm, live hand. Taking that handful of pills every morning was a reminder that I have an incurable cancer. But it was also an affirmation that I was doing something positive about it, and I am able to look forward to looking forward to my life. I wait to see what’s next with my CLL and know there is research and medical advancements that should help me meet that challenge.
I’m going to slow down, but that’s true with or without CLL. It is called being 67. CLL may just make it harder to try to keep up. I am going to have to deal with that. I try to take care of myself, stay active enough and eat healthy. I am hopeful that I will see my grandchildren graduate and start their lives. The gnawing possibility that I won’t makes me cry every time it crosses my mind. Mortality is not all it’s cracked up to be.
For now, CLL has wormed its way into my head. Someday, the painful problems that others report may beset me as well, one way or another. I may not die peacefully in my sleep as I have hoped. And I don’t know that I’m prepared for that. But in the words of the great philosopher Groucho Marx, "I intend to live forever, or die trying."
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