Annus horribilis: cancer anniversary

Annus horribilis: cancer anniversary

There’s more than one reason that your cancer anniversary is important. With gratitude I see mine as a time for moving on. Since surgery and diagnosis on August 29, 2012, no test has seen evidence of bladder cancer remaining in my body. After my next cystoscopy, quarterly checks will relax to biannual checks.

This day is important, too, because it changed my world so profoundly. Fear does that to you. After my tumor was removed on a Wednesday last year, I had to wait through Labor Day until Tuesday to find out the results. I can still feel in my nerve endings what that fear felt like if the wrong thing triggers the memory.

My sister-in-law, a veteran of breast cancer, told me I’d see the world differently in a year. Her words brought me comfort and they were right.

In this terrible year I have accomplished a lot.

I have changed from an HMO to a PPO. After my HMO refused to allow a second opinion with the University of Chicago and Dr. Gary Steinberg, which I paid for out of my own pocket, I realized that I couldn’t work with them. Steinberg is in my PPO plan.

I have changed primary physicians. Again, the HMO’s tyranny created a hugely inefficient relationship with the practice I was part of. When you’re getting labs two times a month or more and needing a GP’s guidance, it’s untenable to deal with the inefficiency. My new primary is in a small practice where they know me by name.

I have fired a handful of physicians. I refuse to ever again work with a person who is incapable of expressing a modicum of compassion or with a person who is clearly unqualified to do their job or who refuses to invite me into the conversation about my own health. I’m done with the “douchebags, assholes, scumbags, and jerkoffs,” to borrow from Kanye West.

I have learned to trust and respect my urologist. He’s very young and he shares a practice with one of the types described above (douchebag nails it), but he has consistently valued my participation in my own care. He is unfazed by, even encourages, the research I do and the questions I ask. He’s kind, knowledgeable, and efficient. I wish like hell that he could see me as more than a bladder and that he’d invest his money and time in my community’s local cancer center, but there’s still time. Even if the former never happens, I plan to at least irritate and annoy him into the latter.

I have learned to actively and intentionally relax. It’s one of the hardest things I’ve learned to do, but with practice it has become easier. Why is it so natural for the world to trigger my anxiety while it takes such effort to trigger relaxation?

I have survived the hospital, the surgeries, the tests, the waiting, the BCG treatments, the scopes, the mixed-up records, the misplaced test results, the side effects, the fear: the cancer. It will be a long time before I can describe myself as “cured,” but I’m ready to think of myself as a survivor instead of a cancer patient.

I have started a blog, which Chicago Now publishes. It’s been a huge learning process (well supported by Jimmy Greenfield and Julie DiCaro, our community managers) but it’s been the best therapy I could have found. I hope that it has offered some comfort, information, and advocacy to others, too.

I have found a group of people at the Cancer Support Center who care for me, support me, provide information and counseling, who have given me opportunities to learn about relaxation and nutrition, and who are there.

I have quit smoking. It was easy at first because the smell or sight of cigarettes made me cry. Lately, however, the smell of a freshly lit cigarette outdoors tempts. But, I’m committed to being a nonsmoker.

I have reconsidered my work and my life and have realized that the job I do is important to me. I care my about my work now more than I ever have, and it feels good.

I am eating better than I ever have and I’m seeing nutrition as an asset rather than as a list of “don’ts.” I’m enjoying cooking and have felt empowered by this change.

On my cancer anniversary I am older in both age and heart. I am seeing bits of gray hair and feeling stiff joints. I have lost friends this year and have met many people with a diagnosis of cancer. Yesterday a friend was admitted to hospice. Yet, several friends are healthy despite a Stage Four diagnosis.

A year later I feel sadness differently. It is tucked away in my heart, but it’s always there. I’ve seen too many people suffer this year and I’ve felt too much fear to deny the sadness or ignore it.

The sadness, though, has a shell of peace. I’ve met too many people with hard-earned wisdom and I’ve felt too much joy to ignore it. The shell is a bit fragile, but it’s getting stronger.

At the end of this terrible year, this first along my cancer journey, I am more grateful than angry and more hopeful than scared.


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