OPINION: Reporting from the front lines of Stage 4 breast cancer

Here it is, 32 years since my first diagnosis, and it’s been a life journey like none other, planned or unplanned. I can no longer wake up, stretch from head to toe and say, “Nothing hurts, everything works,” which was my mantra for most of my 70 years to date. I’m over the initial shock of having to face cancer down for the third time, knowing each morning, another day of my shortened life of incurability has begun. One might in February, I rolled over in bed and my spine fractured. It is the first thought, and the last thought of every single day. But I am now immersed in advocacy and activism. I have learned so much I feel it would be unethical to not share.

First, doctors are not gods and routinely make mistakes. Don’t shoot the messenger here. This is just a warning to not blindly follow the first advice you get. There is a reason they call it the “practice of medicine.” So many elements factor in, including financial goals of the practice (pain meds vs corrective surgery as an example), current trends in drugs of the month, and how current your practitioner is at the moment you are diagnosed, to name a few. Technical challenges abound — several oncologists do not know how to read your scans and rely on third parties to tell do that. Many cannot handle simple zoom mechanics. State laws currently prohibit having telehealth visits from major cancer centers Outside, which puts all the burden of getting and staying there, as well as getting around these cities, on the vulnerable patient. Yet, the major centers are the most current and will likely give you the best guidance. Some doctors there will collaborate with your local docs, which is the best-case scenario — but others say there is no need to do that. One oncologist told me I could talk to five different oncologists and get five different approaches — that I should just pick one and do what they say — not comforting at all.

The second thing is understanding our manic existence of living from scan to scan. “Progression” is not a good thing with cancer. It means the current meds aren’t doing their job and while there are many drugs in the chain, the interval between them gets shorter and shorter — and the side effects worse. The ticking clock gets louder on the projected lifespan. We have to try to be patient with petty concerns and inappropriate comments from loved ones (e.g. “you caused your cancer by getting a COVID-19 vaccine”). We are filled with impatience of seeing precious time wasted by the healthy.

The inside scoop for patients is often best coming from specialty support groups via zoom meetings or Facebook private groups. We share the real side effects, the various opinions from all over the world, the coping methods we have discovered. We discover questions we need to ask our current caregivers. We laugh at the comments we get like “You don’t look like you have cancer.” We realize there are no clear answers. We share our heartbreaks with divorce and friendships gone south. We share our bucket lists and our paperwork struggles and the many new terms we’ve had to learn.

We note that kindness and caring go a long way in our well-being, whereas insensitive office staff can be severely hurtful (laughing about something unrelated while you are going under for surger). Providing counseling and guidance in preparing for end-of-life issues is exceptionally helpful, but local patient advocates are so overwhelmed it is rare to even get a call back from one. We leave heartfelt messages on voicemails and through our portals that are never acknowledged. We watch our caregivers go on vacation for weeks, leaving no one to help.

We are ridiculed about using ‘Dr. Google,’ but the truth is the more informed we are, the better partners we can be in this journey. We can find out about conferences for instance, that may be worth attending. Clinical trials that might suit our particular diagnosis. We seek out support groups for our specific situations, as in “Newly Diagnosed Stage 4″ and “HBOC” (hereditary breast and ovarian cancer), our particular genetic mutations, off-label drug use, alternative treatments, and even ways we want to be memorialized. Trees are popular now.

Some choose to not focus on their disease and live our lives as fully and completely as possible. A completely valid choice.

For me, I quickly uncovered strings of mistakes that lead me to where I am today including: not believing my lump as cancer for a full year, incorrect genetic testing which would have lead to other choices had I known, copious amounts of healthy lymph nodes removed leaving me with a lifetime of compression and lymphedema management, mis-read or unread scans, misdiagnosis of a spinal fracture where I was given physical therapy, massage and muscle relaxants — and realized no one cares about your survival and well-being as much as you do. To me, that is worth fighting for.

I am not a broken person. I am a medicated, empowered person facing an incurable disease with as much grace, purpose and mindfulness I can muster. I am working on finalizing advance directives and powers of attorney and wills and what to do with my precious canines. Life is short — no one should take their ‘wild and precious life’ for granted — ever.

Please come out and join us for the annual Alaska Run for Women on Saturday, June 8 — one of the largest awareness events in the country. Show us how much you care. Be the light in our tunnel. Your support sustains us.

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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