In a few days it will be my fiftieth birthday. This being CLL, I will spend it in Phoenix with my hematologist/oncologist. And Marilyn, of course. We will be discussing treatment, and then two of us will be having dinner somewhere.
Fifty is a landmark, probably moreso than forty, when life is supposed to begin. Fifty is a half-century, as solid and respectable as one of those old gray office buildings that make up the skyline of any Eastern city. It has an established, enduring quality. I feel as if I should go buy some stock, or take up golf.
In reality I will probably continue on my road to eccentricity. Oh, how many cats I could adopt if there were just a slight dimunition in my judgment. I will talk to myself while walking around the house trying to remember what it was I was looking for -- and I will enjoy the conversation. I will take less and less moderate positions on the great issues of the day. I will become twice the hippie I might have been in my youth and will trip without the LSD.
Having chronic lymphocytic leukemia changes fifty. What might have been a midlife crisis point has become rather welcome, a milepost of survival. I made it another year, and into another decade, and so there is reason to celebrate.
The gifts will be simple: My beloved Marilyn, and good friends, and family. My older half-brother (along with his kind and personable wife) has reappeared in my life. I did not spend a lot of time with Rick as a kid -- he is 11 years my senior -- and we have had only sporadic contact as adults. He has had an interesting life, taking some wild and woolly paths rather different from my own. Meeting as we are again in our older age, I find we have a great deal in common. Our outlooks toward the state of civilization and the meaning of things are similar in many ways. He’s smart, and he has a big heart and a good sense of humor, and he wants to do what he can to help me fight this CLL.
Our mother died, suddenly, at the age of 57, when I was in college. When I look into his face I can see her eyes. I remember when she died, thinking 57 was so young. I never guessed that I might acquire a disease that would, statistically, make my own survival to that age a question mark.
I know some wonderful people with CLL who say they are dying bit by bit, losing the war of attrition. They hold out little hope of a cure, and they live with some debilitating aspects of the disease, notably fatigue. They see it as their inevitable end.
I do not see it as mine. Call me eccentric, but the one thing that is incurable about me is my optimism. Defying the conventional thinking is something that appeals to me more and more as I get older and older. Fifty may not make me a gray monolith; it may free me to float away from established paradigms.
One of my earliest memories is being in a hospital, in a crib, and being determined to get out. I climbed up the back of the crib, grabbed onto a lamp attached to the wall above it, and then made my way to the window sill above that. A nurse passed by the open door to my room, and I will never forget the look of horror on her face as she saw me leaning against the window several feet above my bed.
Rick said that when I was a toddler I was a little Houdini, always getting out of cribs, and out of my room, much to the annoyance and amazement of my parents. I had a facility for escape.
Hear that, CLL?
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...
6 days ago