I kicked and screamed, I cursed and hollered, I banged my fists until my knuckles were bruised . . . and then I cried. Could my doctor who had chosen to phone me that afternoon to announce that I had a malignant tumor in my chest, most likely lymphoma, possibly Hodgkin's disease be wrong?
I had spent over 18 months being examined by various specialists, only to have them tell me they could find nothing wrong except "neurodermatitis" (nerves) as a result of "suburban anxiety." Tranquilizers had been prescribed, and body creams, and aspirin, and now I was being told over the phone I had cancer.
I could not accept that this was happening to me, but one remaining shred of intellect told me that denial would only shut out possible medical alternatives that might lead to control of the disease, if not a cure. But could I believe that cancer could be cured? Wasn't the word a synonym for death? Both of my parents had died from cancer and now at age 33 I had my own malignant disease of the lymph system.
I would need to find the right doctor and the right medical facility to meet my new, critical needs. And yet I was paralyzed. I needed to find someone immediately who knew my terror; someone I could talk with on a personal--rather than clinical--level; someone who had "been there." I needed to find a survivor.
In the midst of the most catastrophic experience of my life, somebody out there did help me. Ellen Stovall, of Rockville, was referred to me through mutual friends. Ellen had been given the sometimes-controversial title of "patient advocate" many years before by a progressive physician who recognized the need for one-on-one "peer support" among cancer patients.
Eleven years ago, when she was 24, married for only two years and the mother of a new baby, she was diagnosed with Hodgkin's disease. That was nine years before my own cancer diagnosis; she certainly qualified in my eyes as a survivor.
Ellen had longed for someone to identify with when she was ill, but at that time there just weren't many people living out normal life expectancies after a cancer experience. She vowed to herself that if she lived, she would share herself with other cancer patients.
"I wanted to take the most negative experience of my life and somehow pull something positive out of it," she told me. "When I became a 'patient advocate,' it was not totally for selfless reasons. I also needed fellow cancer patients to somehow become my friends. Originally I needed to learn from them as much as they needed to learn from me."
As the years went on and Ellen became secure in her own remission, her involvement with cancer patients intensified. More physicians learned of her willingness to make herself available as a good and ready listener, one who could empathize with the cancer patient. Her presence and participation were vital in my own circuitous recovery.
"I wanted to help you so badly, but I really wondered if I could," she confided later. "For so many people, their first experience with the word cancer is when it happens to them, but you had already known the dread of personal cancer losses. This was one level of your emotional baggage I had yet to experience."
Ellen did help me through hours of conversation, often by phone. (I didn't meet her face-in-face for two months.) I would need diagnostic surgery that would result in the removal of my spleen--she had been there. For my kind of inoperable tumor, chemotherapy as well as radiation treatments were recommended--Ellen had been there. There would be pain and incapacitation after the treatments--she had been there.
In time I would face the issues of alienation, isolation, sexuality, mortality, self-image and the incredible sense of my body's betrayal, a loss of any control over my fate. Ellen could understand--she had been there.
Ellen became my "coach," motivating me to get in there and fight to win. In a cancer war, how the first battle is fought and the decisions made from the very beginning can alter the course of the rest of a life. Ellen knew--she had been there.
I am fortunate; I have been granted the gift of life--for now. My cancer has been in remission for two years, but it will be several years more before my health professionals can use the word "cured." As I live with the uncertainties I am comforted by the fact that 45 percent of cancer patients in the United States can now be cured.
Dr. E. H. Rosenbaum, in his book Living With Cancer, says it well:
"Not all patients are able to live well with cancer, because cancer, like heart disease, may not respond to the best treatment or the strongest will to live. When treatment fails to stop the spread of cancer or when a reoccurrence comes after a long remission, the heartbreak and frustration are more than a person can bear.
"I can only admire the determination and endurance of people under these grievous circumstances. They are facing the toughest time in their lives. At our lowest ebb there is a small flame of inner strength. Call it what you will, the fear of dying, the will to live, or sheer determination. Whatever it is, there is a toughness in all of us that makes us try again and opt for life."
Ellen helped me choose life. During the years since 1971 when Ellen was diagnosed with cancer, organizations to help the cancer patient began to acknowledge the physical and emotional residue of a cancer experience. Support groups offering peer support emerged.
These groups, although invaluable for some, tend to attract the most verbally able and often require "physician referral." I respect this aspect but believe that how one chooses to deal with cancer--including the peer program that works for them--is a personal matter.
I looked for one-on-one rapport, unencumbered by a sterile environment or a clinical approach. Ellen's willingness to wear the label of "patient advocate"--she is now co-coordinator of the CanSurmount peer group--provided this support. I hope others like her will emerge, but it will take doctors to put patient and advocate together.
The term advocate, it is no secret, tends to raise eyebrows with the word patient in front of it. Who then, people ask, is the adversary? It is cancer. Not the physician or the medical team. The term should not denigrate the medical establishment, but simply signify another person on your side. An advocate, an extra--and knowing--hand reaching out and reminding us daily of the Sanskrit proverb:
Look to this day for it is life, For yesterday is already a dream, And tomorrow only a vision,
But every today well lived makes every yesterday A dream of happiness and every tomorrow a vision of hope.