A Year After Chemo … And What I Know

Today is the anniversary of my introduction to chemotherapy after I was diagnosed with lymphoma. 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 was, be any different?

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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 lymphomic 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 are operationally leave a lot to be desired. It seemed too often there was a problem that really didn’t to happen. Without going into detail, let’s just say the experience just wasn’t what it should or could 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 post I wrote to get an idea of who I was and what I was going through – but she never got around to doing 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 care givers 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? Maybe my perspective is skewed being a former headhunter where everyone is an interview waiting to happen and an opportunity to hear a life story.

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. 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. The tolerance setting on my “bullshit meter” has been turned way down. 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 fact that 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 re-occurrence of my lymphoma; even though I can focus on my health. I can’t walk back the physical effects the chemotherapy has had (however minor in the whole scheme of things). And I can’t directly change the way America’s 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 is 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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I invite you to join me on my journey in rebuilding community by reading my series, On the Road to Your Community’s Perfect World.” This is my articulation of how we can create better, more inclusive, unique communities as the solution to our society’s pressing issues. Consider each week’s post a Mile Marker (MM), a cerebral off-ramp from the highway of your daily routine, taking a you little further down this road to a better version of society.

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You can also follow me on Twitter at @clayforsberg and on Google+.

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5 thoughts on “A Year After Chemo … And What I Know

  1. Wow, Clay, I had no idea. (I feel inattentive, but on the other hand, you certainly haven’t let this “define you.”) Thanks for having the courage to write and share this post. Our positive energy and affirming thoughts are heading your way.

    1. Thanks Karen. I don’t know if I’m courageous, but rather just had to get it off my chest. As much as anything, this piece was a communication to myself. I had to have leave an imprint me, and my defense mechanism is to try to pull some benefit out of everything. I really couldn’t do much writing for about six months though. My blog roster reflects it. I got back into it after the 1st of the year though.

  2. I admit I have been busy and have not seen your posts over the past year. The headline of this one caught my eye for obvious reasons. I know we don’t know each other, but a while back we were on a joint mission to better public education, so I do feel a kindred spirit with you. I read about your journey with both sadness and relief for your current status. My hope for you is to continue on your journey and wish for wellness and the peace of mind with which you approach this battle. I know life is short and very fragile, and your recovery will be in my thoughts. Best to you,
    Ruth Catchen

    1. Thank you Ruth. It’s been a while, but I still see you flow through my Twitter feed. No need to be sad though. As mentioned in my original post – this experience is just another “Pothole in the Road to my Perfect World.”

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