These are excerpts from my responses to a questionnaire provided by a researcher at Oregon Health and Sciences University in 2015.
Please tell us about your scar.
My scar is a tic-tac-toe pattern located on my mid back. The center rectangle is slightly inset because flesh was excised, prior to grafting new skin over the excision.
My scar is normally hidden beneath my shirt. Although I visited a gymnasium often for the last few years, only one of the many of people in the dressing area or swimming pool have ever asked me about my scar. I suppose it is considered impolite to ask about scars; the more obvious the scar, the more impolite the asking.
What does your scar represent to you?
My scar is evidence of poor self-care. I didn’t have to get melanoma; it was a result of excessive exposure to the sun in my youth. My skin doesn’t tan easily and I spent a lot of time outdoors, doing farm-labor, yearning for the dark tan that some of my friends were easily able to achieve.
My scar represents a treatment failure. My surgeon was intent on establishing a wide margin, and not so concerned about the appearance of the scar. This was done in the eighties with the treatment protocol of that time, which failed to account for the migration of melanoma cells in the lymph system. Unfortunately, 30 years later metastatic melanoma returned in my lungs and lymph nodes.
Most important, my scar represents survival. I’ve lived with melanoma for more than 30 years, and even though melanoma has returned as a metastatic disease, I hope to survive with help from recently developed treatments that weren’t available 30 years ago.
What does your melanoma diagnosis mean to you?
A metastatic melanoma diagnosis is normally considered terminal with an uncertain but foreshortened lifespan.
I am fortunate to be a responder to Interleukin-2 treatment. I am in uncertain territory with stable disease. This means that metastatic melanoma is still a reality in my life, and it’s on my mind, but the trend of my scans has been reassuring.
How does melanoma diagnosis impact your daily life?
I have chosen to reorient my life around surviving metastatic melanoma. I no longer work for pay; I work for good health and wellness. My job involves giving my best morning hours over to walking plus activities from a menu of weight lifting, yoga, lap swimming, meditation, and gardening.
I eat carefully and often, from a Mediterranean diet. I avoid packaged food, corn syrup, and most carbohydrates. I take vitamin and mineral supplements as well as other food supplements that are shown to have anti-cancer properties.
I get lots of rest, often sleeping 10 to 12 hours a day. I avoid stressful activities, people, and situations most of the time. We don’t have a television and this leaves more time for reading.
Please tell us how you feel about the possibility of recurrence of your melanoma.
Thirty years ago, when my primary melanoma was surgically removed, I felt confident that it would never return. I mainly resolved to use sunscreen and avoid sunburn, so that no further melanoma lesions would develop.
Three years ago, when metastatic disease was discovered, my confidence evaporated. Even long-term melanoma survivors are vulnerable to metastatic recurrence. Consequently, I sometimes feel anxious about the possibility that my melanoma cells could mutate and overtake my immune system. Anxiety peaks when I’m over-tired, feeling pain in my chest, or coughing.
Please describe how you feel your cancer has been perceived by friends and family.
Friends and family know that I’ve been diagnosed with advanced cancer. These days, most people suspect that advanced cancer of any kind is still likely to be a terminal diagnosis. Many people have witnessed a friend or relative with stage-four cancer go into a precipitous decline and die within months.
Eddy and I decided to go public with my cancer diagnosis. My son Chad agreed to send emails to a list of family and friends to keep them informed about my health. Some of the early shared medical information was discouraging, as doctors initially thought that I had inoperable lung cancer. People who saw me often in public were concerned and saddened by my rapid weight loss, pale skin color, and generally looking suddenly frail.
When I entered treatment, most people thought that I was receiving chemotherapy, although I was actually being infused with immunotherapy, high dose Interleukin-2. This distinction is important because chemotherapy does not work with metastatic melanoma, whereas immunotherapy sometimes works very well.
Within a couple of months of beginning IL-2 treatment, it became clear that I was responding. I regained lost weight and a ruddy complexion. My mood was less anxious and my overall appearance was trending to more normal.
Depending on their world-view, people think this was miracle of improved cancer treatment, an answer to prayer, or both.
Given your cancer diagnosis, tell us how you view the health of your friends and family.
Good health is an ultimate gift in this life. I took it for granted until I encountered a serious threat to my health.
Melanoma is actually a common disease in the State of Oregon. That’s surprising, because we think Oregon is not a sunny state. Fair skin, blue eyes and exposure to ultraviolet rays in early life all increase the risk of developing Melanoma. It’s a shame that people aren’t more careful with sun exposure, especially with their children.
My cancer diagnosis suddenly made me much more aware of others with cancer, and now that I’m in my late 60’s, more people my age are getting cancer. Four friends have died from various forms of cancer in the past two years. Several others had successful treatment for early stage cancers and are in remission.
Despite progress with treating cancer in the past 25 years, several forms remain resistant to treatment. I find myself over-reacting when I hear of someone who has been recently diagnosed and am too quick to ask: what type of cancer do they have?
Do you feel like a survivor?
Eddy framed a photo of me on the summit of Mt. Lassen, with the caption, “I am a long-term survivor.” We hung her artistic creation in my room at Providence Cancer Center during each of the four last weeks of immunotherapy.
The wall art became a conversation topic with caregivers and visitors about surviving melanoma. It probably seemed audacious to the staff, since they know very well that most people aren’t cured by the treatment they provide. For me, the wall art was a daily reminder that I’ve already experienced 30 years of living with melanoma and am therefore likely to experience several more years.
Following treatment, my oncologist said, “You are a responder, and if this continues for another year or two, statistics say it’s unlikely the melanoma will return. But I can’t give you an iron-clad guarantee.” I feel grateful that I’ve survived and hopeful for the future.
I also feel like a survivor who has returned from war. Many of my fellow cancer patients have not survived their personal encounter. I am fortunate, and I’d best enjoy it while possible.