A warrior heads into a battle with the possibility of winning. Many times a warrior is a heroine for facing a challenge by choice. A warrior can maintain a strong face and endure pain without flinching.
Instead, I am mad as hell. I am angry at a profit-driven medical system overloaded with cancer patients. I’m pissed at doctors who can wait three weeks to discuss a positive biopsy. I am furious at being diagnosed at Stage 4 — so late in the game, because the expectations are that I’m “out of the woods” after five years when I am at 31 years.
I am drowning in fear and tears.
Instead, the truth is 30% of women who have gone through treatment for breast cancer will recur. Forty-five thousand of us still die each year, roughly the same numbers that my mother faced in 1983.
So what do you call me? A valiant holdout? A furious fighter? A zen yogi adapting to acceptance? A pioneer for some of the choices along the way, like refusing chemo a second time or being one of the first women in history who created and froze embryos before going through 12 rounds of the lifelong devastation of chemo? Mine is not a role chosen nor winnable. It is a one-way trek up a mountain from which there is no satisfying or rewarding view at the top — from which no one can be at my side all the way. The last steps will be completely solo.
Now the question becomes what to do with this precious commodity of time? This dwindling resource of unknown depth. Quantity. The immensely personal choice of how far and how long to climb. Threads of love, vapors of compassion quickly absorbed by daily tasks of managing an incurable disease.
Canceling subscriptions. Cleaning the fridge and cabinets. Relief of not worrying about deteriorating in old age. The fullness of seeing your child launched, the grasp at a few seconds longer on those phone calls. The hopes of not being forgotten.
How do we get our rightful place at the decision-making table? Who will listen to our ideas mulled over for long nights, weeks of indecision, months of inhumane treatment, and ultimate sacrifices for what mostly benefits the billion-dollar pharmaceutical industry? How the extension of six months from disease progression was met with a standing ovation at a recent oncology research conference. And I am reminded, disease progression is not life extension; it is merely more months before new toxic drugs must be taken as our hair thins, our aging bumps up to fast-forward, our feet and hands start hurting, our bodies become home to fungi and every illness we pass by.
Our oncologists are so busy they or their point people can take weeks to get back to those of us who are hanging on every scan and lab report for glimpses of hope, which even they do not believe is possible.
Now I must surrender my identity as a helper, a role model of longevity in this brutal world where hope from long-term survivors would uplift sagging spirits more than anything else — because now I am their worst nightmare. I must drop my proud stride and fold into the flock. Don’t blame me for cherry-picking the best food from the smorgasbord or irrational spending on things I will use for my shortened life. For taking endless vacations to share time with loved ones. For unfinished works. For bogarting life and jumping the line.
To the thousands of women connected with along the way, I am sorry.
Please support the Alaska Run for Women as they hold the torch for hope, scientific advancement, comfort for those of us who are lambs to the unknown sacrifice of clinical trials, keeping us visible.
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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