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Thirty-two years after my initial diagnosis, I have embarked on a journey in life that I have never experienced before, planned or not. I no longer wake up in the morning, stretch from head to toe and say, “Nothing hurts, everything is going to be fine.” This has been my mantra for most of the last 70 years. I have gotten over the initial shock of having to face cancer for the third time, and each morning I realize that a new day in my short, incurable life has begun. In February, I turned over in bed and broke my spine. It is the first and last thing I think about every day. But I am now immersed in advocacy and activism. I have learned so much that I feel it would be immoral not to share it.
First, doctors are not gods and routinely make mistakes. Don't blame the messenger here. This is just a warning to not blindly follow the first advice you get. There's a reason it's called a “medical practice.” So many factors are taken into account, including the financial goals of the practice (e.g. painkillers vs. corrective surgery), the current trends in medications this month, and the doctor's current knowledge at the time of diagnosis. There are a lot of technical challenges. Many oncologists don't know how to read scans and have a third party tell them. Many doctors can't handle the simple mechanics of Zoom. Currently, state laws prohibit telemedicine visits from major cancer centers outside the state, so the burden of traveling to and staying in these cities and traveling all falls on vulnerable patients. Still, the major centers are the most up to date and will probably give you the best guidance. Some doctors will work with local doctors, which is the best case scenario, but others say you don't have to. One oncologist told me that if I consult with five oncologists I'll get five different approaches, so I can just pick one and do what they say, which didn't reassure me at all.
The second is to understand our crazy existence of living from scan to scan. With cancer, “progression” is not a good thing. It means the current medicine is not working, there are many medicines in the chain, but the intervals between them get shorter and shorter, and the side effects get worse. The clock on our predicted life span ticks louder and louder. We have to become patient with petty worries and inappropriate comments from our loved ones (e.g. “You got cancer because you had the COVID-19 vaccine”). We get annoyed when we see healthy people wasting their precious time.
For patients, the inside scoop is often best obtained from specialized support groups via Zoom meetings or private Facebook groups. We share real side effects, different opinions from around the world, and the coping strategies we've discovered. We discover questions we need to ask our current caregivers. We laugh at comments like, “You don't look like cancer.” We realize there are no clear answers. We share the heartache of divorces and friendships that have broken down. We share bucket lists, paperwork struggles, and the many new terms we've had to learn.
Kindness and compassion go a long way toward our well-being, while insensitive office staff can be deeply hurtful (such as laughing at something irrelevant while you're under anesthesia for surgery). Counseling and guidance to prepare for end-of-life issues can be very helpful, but local patient advocacy groups are overwhelmed and rarely even return calls. We leave heartfelt messages on voicemails and portals that never get a response. We watch as caregivers go on vacation for weeks with no one to help them.
We're mocked for using “Dr. Google,” but the truth is, the more knowledgeable we are, the better partners we can be on this journey. For example, we learn about conferences that may be worth attending; clinical trials that may fit our particular diagnosis; we seek out support groups for our particular situation, such as “newly diagnosed stage 4” or “HBOC” (hereditary breast and ovarian cancer), specific genetic mutations, off-label drug use, alternative treatments, and even ways we want to be memorialized. Trees are popular right now.
Some people choose not to focus on their illness and instead choose to live the fullest life they can, and that is a completely valid choice.
In my case, I quickly discovered the series of mistakes that led to where I am today: not believing the lump was cancerous for a year, the genetic test being wrong (I would have made a different choice if I had known), the removal of a ton of healthy lymph nodes that will require lifelong compression and lymphedema management, the misreading and misreading of scans, the misdiagnosis of a spinal fracture that resulted in physical therapy, massages and muscle relaxants, and the realization that no one cares about your survival and health as much as you do. To me, that's worth fighting for.
I am not a broken person. I am medicated and empowered, facing my incurable disease with as much grace and purpose and mindfulness as I can. I am putting together advance directives and powers of attorney and wills, and working on what to do with my precious dog. Life is short. No one should ever take their “wild and precious life” for granted.
Join us on Saturday, June 8th for our annual Alaska Run for Women. This is the largest awareness event in the country. Show us how much you care. Be the light in our tunnel. Your support keeps us going.
Mary Katzke is a media maker and cancer survivor who lives and works in Alaska. Her work over the years has included “Between Us,” “Beyond Flowers — What to Say and Do When Someone You Know Has Breast Cancer,” “The Quiet War” on metastatic breast cancer, “Partners in Healing” on integrative medicine, and a photography exhibit on display at the Mat-Su Health Radiation Center called “Alaskans in Pink.”
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