Today is the anniversary of my introduction to chemotherapy after I was diagnosed with CLL (chronic lymphocytic leukemia). One year ago today, I walked into Billings Clinic to begin a five month regime of chemo treatments. On that date I also posted the piece, “A Pothole on the Road to My Perfect World.”
I felt writing would be a good way to get my head around “having cancer”. I wanted to avoid a “woe is me” attitude though; rather how could I turn this into a source of motivation. Getting through it wasn’t even a question. I was going to. The issue was how could I make it through the other end even better … a new and improved version of me. I’ve always been a pragmatic optimist. I thought why should this experience, however adverse it may seem, be any different?
May 2015: But all that is just logistics. How my life agenda (personal and professional) is affected is really just resources allocation. This whole cancer thing is just another experience (a big one nonetheless). And our experiences shape who we are. I’m very curious to see what cerebral rabbit hole this one will take me down. I have no idea what synaptic connections will be forged — manifesting from the depths of places I have no idea even existed. I’m sure my perspective on things; past, present and future will be altered. At least I hope it will be. I’d hate to think I’m so emotionally detached that something like this won’t have an effect on me.
A Year Later … And What I Know
That was closing paragraph from that May 12, 2015 piece. I was all about resources and experiences and how I could mix them together to make some magic elixir that would transform me. Into what was the question I asked myself.
Well here we are and it’s a year later and this is what I know:
I know that according the numbers on blood panels, my cancer is in remission. During my initial diagnosis my white blood count was fifty times higher than normal. Critical is what they called it last May. Now it’s normal. So that’s a good thing. My condition is called chronic lymphocytic leukemia. By definition, chronic means “persisting for a long time or constantly recurring.” So guess the cancer is always kind of there, just waiting to show itself, rearing its ugly head creating one of those fore-mentioned potholes down the road. I’ll deal with that if and when I need to. But in the meantime, that occupies no synaptic energy.
I know that health care facilities, at least the ones I had experience with, operationally leave a lot to be desired. It seemed there wasn’t a time when I went in there something wasn’t wrong. Either an appointment time was messed up, the drugs I was to be injected with were wrong (which I caught), or the experience just wasn’t what it should have been. Over the five months, my doctor changed three times and my navigator changed so many times I didn’t even have one at the end (through no doing of myself). But in the end I shouldn’t complain too much. The chemo drugs they gave me worked (even though I was allergic to one and multiple times went into rigors and broke out in hives).
I know that aside from the numbers on my blood panel, I really wasn’t much more to these people. The old cliché “just a number” is no exaggeration. I was my diagnosis. Seldom did anyone, a doctor a nurse or my cancer navigator ask me about what my life was all about and what effect this disease and the treatment program might have on it and those I was responsible for. I tried to get my navigator to read the “pothole” post I wrote to get an idea of who I was and what I was going through — but she didn’t do it. However I do like my current doctor. He’s young and energetic and seems to be on top of the new developments in the cancer world.
Maybe for Billings, Montana I didn’t fit the profile of an average cancer patient spending the day in the infusion center. Most I saw had family members and caregivers more my age. One time I asked a nurse about what cancer patients did about the side affects of their treatment on how it affected their daily lives and economic sustainability. Her answer was that no one ever asked that. “I guess they go on disability and collect insurance.” Really? Disability. How’s that work when you’re running a business and lending care to a pair of parents in their eighties on top of it?
I know what “chemo brain” is now; not that anyone told me about it or what to expect. Chemo brain is like having the proverbial wet blanket thrown on the campfire of your creative mind. For me … this is a big deal. All day long, every day, all I do is think. I’ve spent forty years exercising my mind to shun ideologies and cerebral shortcuts and instead think things through (unfortunately I’m not always successful though). With chemo brain my concentration was propelled into an abyss of fragmented synaptic entropy. Fortunately I’ve been able to reign in these effects. But still I have an excuse for the occasional memory lapse (even though it probably has nothing to do with it).
I know my body just doesn’t work quite the same. I don’t hear as well — hopefully it’s short-term. My sense of smell still hasn’t fully come back. It’s like I’m always smelling something burning. That’s not surprising since the active component in one of the chemotherapy drugs is acid. My daily routine of yoga and stretching has only now become daily again. My body and its recovery mechanism didn’t get the message that I wasn’t going to let cancer slow me down. They say when you die and they do an autopsy on you, the coroner can tell if you’ve had chemo. That wouldn’t surprise me. Doctors don’t tell you anything about these things either.
These things I learned didn’t really come as a surprise though. I hoped that they would be different and I could have used “mind over matter” Jedi ninja tricks to power through it. Not so much. But one thing I didn’t expect was the toll this last year would take on my patience. I’ve always been amped up — but now it’s different. Maybe its the confluence of my experience last year and our current insane presidential campaign that’s cranking me up. The endless procession of circus freaks masquerading as candidates and the fact they’re being taken seriously has turned into a daily battle for me to ignore. To believe any of these charlatans can have any positive effects on the United States or the world is inconceivable to me.
Looking back at the last paragraph of that piece from 2015, I come back to the question, “I’m very curious to see what cerebral rabbit hole this one will take me down.” What’s come of all this? What can I pull from this “lost year?” I as feared, “I’d hate to think I’m so emotionally detached that something like this won’t have an effect on me” — I’ve had trouble writing this. Months ago I made the decision to write a post on this day, the anniversary of my first treatment. So I had to come up with something … most of all a plan of action to use this experience to my benefit.
Turning Impatience Into Motivation
I can’t change the things I know and have learned. I can’t prevent a recurrence of my CLL; even though I can focus on my health. I can’t walk back the physical effects the chemotherapy has had. And I can’t directly change the way America’s dysfunctional operationally antiquated health care system works.
But the patience thing is a different story. I don’t need to let it be a negative. On the contrary — I’m going to use it. It’s time to be impatient. It’s time not to just talk and vote … but rather act. It’s time to make stuff happen. Just because the political circus is in town doesn’t mean we have to go to it, especially everyday. My impatience with this pathetic state of institutional competency (government and beyond) has only further stoked my motivational fire. The necessity of building community as our social safety net is even more apparent to me now.
It’s time to be impatient. It’s not time to wait. Sometimes you just have to create what you want to part of. 2015 was a lost year and nothing is going to change that. It’s made me a different person — more driven. I’m not going to just sit back and be a survivor. Having had cancer doesn’t define me or label me. Experiences, good and not so good, give you the tools to make your life what you want. It may not seem that way at the time, but it’s up you to determine what they’re going to be used for.
I don’t even know if I’m out of the “rabbit hole.” But regardless, I’m kind of getting used to that cat’s grin.
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