As we begin my story, it is essential to emphasize that it is not so much what I did with breast cancer and lymphedema, but rather what I did with my life—a journey from Survivor to Conqueror to Advocate. Looking backwards: I HAVE LYMPHEDEMA (to this day), BEFORE THAT, a modified radical mastectomy, chemotherapy, radiation, and tomoxifen, BEFORE THAT, the shocking news and BEFORE THAT, I WAS IGNORANT. Ignorance played a role when, in February 1988, at age 55, I realized I had a lump beneath my left nipple but waited three months until May 1988 to see a doctor. I was shocked to be told that I had developed what was conventionally thought to be a woman’s disease. Had that been my wife, we would have been in the doctor’s office within several days. I was ignorant of the lack of information about the possibility of developing lymphedema as we charted a course of treatment.
In retrospect, many in the medical community seemed to have no more knowledge about lymphedema than I did of breast cancer in men. To understand the origins of limited information on lymphedema, I learned from a number of doctors that they were reluctant to raise the subject with a newly diagnosed or treated patient on the grounds that most patients were under such a high degree of stress that their “shutters” were closed. That lack of information proved to be costly to me, having lost about nineteen lymph nodes. Two years after my breast cancer treatment, I was unprepared to respond to a bug bite. Lacking lymphedema risk reduction information, I allowed the bite to proceed to redness, swelling, heat, and eventually cellulitis and lymphedema. All efforts to contain the infection failed. Shared ignorance continued into the areas of conflicting recommendations, as I tried mechanical pumps of different configurations, passive sleeves of various constructions, active physical manipulation, and lifestyle restrictions. I am happy to say I have settled into a routine of both day sleeves and night wraps, annual checkups, and several sessions of manual lymph drainage (MLD). Unlike in my experience with breast cancer, I am UNABLE to say, “I am cured!” BUT what I am able to say is that lymphedema has been “inconsequential” in my life, not because of the medical aspects of the condition, but because of my reaction to it. It has been inconsequential because…I chose to make it that way. What allowed me to do this was my recognition of the separation and distinction between the clinical aspects of disease and the emotional, exemplified by the phrase, “Survive the disease (the clinical) and conquer the emotions (the personal).”
My response to the ignorance and uncertainties was to maintain that which had defined me before disease: my personality. Still another phrase emerged: “You take your personality with you into disease.” If aspects of your personality supported you before disease, don’t abandon them after disease. Having been tenacious, aggressive, assertive, optimistic, and defiant before breast cancer, MY FAMILY and I didn’t flinch in our approach post-disease. Examples of these emotional traits may be found in my family placing a miniature scuba diver on my hospital bedside table, reminding me to reschedule a scuba dive I had cancelled due to surgery and treatment. Another act of defiance occurred when, after coming home from the hospital, my wife found me outside, drainage bottles and all, mowing the lawn. To her astonishment, I answered, “it needed cutting.”
A major element in my progression from potential victim to victor came from my participation in Susan G. Komen “Race for the Cure” events. In late summer of 1992, as my wife and I were watching an advertisement for an upcoming race in New York City, we were struck by the limitation that “it was for women, only.” Realizing that this limitation also limited awareness of breast cancer in men, the family concluded that we all should participate. The uniqueness of breast cancer in men provided a platform for heightening awareness and advocacy for all people. We signed up! Before September 1992, I had only run for a commuter train or plane at an airport, but my personal race for awareness was on. Born out of this experience was the phrase, “men should not die from breast cancer out of ignorance.” With sponsorship from New Balance and Komen for the Cure, I have accomplished an unmatched 231 races nationally, including 5 international races. I show up, unashamedly, wearing a pink hat with a small American flag on top and a blue t-shirt with a back phrase, “MALE BREAST CANCER RARE BUT THERE.” As one newspaper put it, I had become the “Forrest Gump of Breast cancer.”
Now, at age 81, in the fourth quarter of my life, I cannot imagine a better way to serve my fellow human beings. Please join me on my website: SIRvivormark.com and give me a hug at my next Race for the Cure event.
sirvivormark [at] att.net