OPINION: The devastating uncertainty of recurring cancer

We are immersed in “Pinktober,” when cheerful pink ribbons adorn billboards across the country and yogurt cups in every dairy section, but I am the crier from the gallery who yells, “What about the 30% who recur?”

We get one day: Oct. 16. Metastatic Breast Cancer Awareness Day.

Just more than one year into the silent endurance of constant pokes, prods, tests, scans, infusions, infections, medications, varying opinions, estate planning and uncertainty, the usual pink-wash leaves me feeling annoyed and sad at the same time. Oct. 16 is the only day we are recognized during an otherwise promotion of mammograms and fundraisers. During this past year, I have taken 30 hours of training from Living Beyond Breast Cancer and traveled to major cancer centers for opinions. I have finished building my lovely home in Homer. We are “metavivors,” a term we have coined for our limbo status of being alive and incurable.

I am heading into my 32nd year of facing breast cancer, and it is not pretty.

Metastatic breast cancer patients are actively treated until the cancer outsmarts their treatment plan and becomes resistant to the medications and treatments currently available. Then the disease is fatal. We need more treatment options. We need more research. We pray for more time.

The first thing one learns on this front line is that there is a “standard of care” that involves pretty much the same drugs no matter where you go or whom you see if your tumor is classified as hormone positive (80% of us). Treatment includes an assault on the endocrine system. You lose a lot of hair, you start to ache in your joints, you become forgetful, and you become vulnerable to every passing virus and bacterium. Your bones start to weaken, so you must take the double-edged potion of biphosphates — an IV solution that hardens your bones but can also make your jaw rot. And this is the easiest part of the treatment continuum.

Once this regimen fails or you have what’s called progression, things get much murkier.

Leaders in the field don’t agree on next steps because there are no clear winning answers — only prolonged existence, which is the goal. It’s whack-a-mole at its sorriest.

Thanks to social media, I have joined a brand-new sisterhood of women hanging onto the life raft of hope where we share information gleaned from around the world. There are many types of support groups online — for your genetic type of cancer, your stage, your treatment drugs. We have the most interesting discussions. Our exchanges are on fire with new research results. Our hearts are heavy with the passing of the voices we’ve come to know as we banter about our challenges. “That center made me feel like a guest of honor!” one woman writes, while another shares, “I can just see it in my oncologist’s eyes — here she comes again.”

Yes, when fighting for our lives, we do find every study and wacky cure out there and we do come to appointments armed with folders and links and supplements. Sometimes we’re more insistent than our providers would prefer. We are frantic and desperate to just not die.

Can you blame us?

I am easily labeled a troublemaker, but having researched extensively in my quest for answers, I can tell you it is more common to be anxious and driven to cling to our life rafts than to passively accept whatever the doctors tell us. Especially when they disagree. Especially when they miss tumors we find ourselves when we review our own scans.

Last time I piped up with commentary, I wrote about the shock of being diagnosed with Stage 4 cancer after 31 years of no evidence of disease. Now I face new conundrums. How much of my retirement savings should I spend enjoying life? How much should I save so that in the end I can have the care I need? Or do I need to figure out how to avoid having that happen as in making proactive choices, i.e. assisted suicide.

Navigating chronic illness is very much like producing a film or building a house; you pull together the smartest team you can find, spend a lot of money, and trust. But in my case mistakes are continually made: tumors missed, predictive outcomes of treatment inapplicable, and unique factors in my equation including genetics that require specialists.

In other areas of life, I have guesstimated quite successfully. I can estimate the cost of a shopping cart of groceries to within two dollars. I can make a large pot of soup and lay out exactly enough Tupperware and recycled containers to hold them for the freezer. I haven’t balanced my checking account in more than 40 years — I just make sure there is more going in than going out.

But this? This is a puzzler. Steak with cream sauce is a cholesterol bomb — but who cares? Sunscreen? Skin cancer has fallen to the bottom of the worry list.

I just watched the last wisps of my curls and femininity get snipped away in a hair salon where the stylist’s creation was a far cry from the photo I brought. But what really matters now anyway?

Mary Katzke is a media maker and cancer patient living and working in Alaska. Her works over the years have included “Between Us,” “Beyond Flowers — What to Say and Do When Someone You Know Has Breast Cancer,” “The Quiet War” about metastatic breast cancer, “Partners in Healing” about integrative medicine, and a photographic exhibit called “Alaskans in Pink,” permanently housed at Mat-Su Health Radiation Center.

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