For me, the roughest aspect of dealing with breast cancer occurred after the treatment ended: living with an incurable disease.
Like most breast cancer patients, I progressed through a predictable sequence of events: receiving the diagnosis; choosing among treatment options; and undergoing treatment. The diagnosis shocked me. The treatment options confused me. The treatments; surgery, radiation, and a four-year course of the drug Tamoxifen-exhausted me. But somehow, I got through these phases because I had a concrete goal: to kill as many cancer cells as possible and move on with my life.
But moving on with my life after my treatments ended was emotionally difficult and debilitating.
Without my cancer-fighting partners of radiation and drugs, I felt helpless and overwhelmed. Although I tried to be my old self with family, friends, and colleagues, I couldn't truly move on because I constantly obsessed about breast cancer.
Should I tell people I was a breast cancer survivor, or shouldn't I? As a normally prudish person, I anguished over who and when to tell about a very personal situation. Whenever I ran into acquaintances, I was torn between disclosing the fact that I had breast cancer and not disclosing it.
Suddenly, the question, "how are you?" carried intense meaning for me. If they hadn't heard that I had breast cancer would they really want to know, or would they feel duped if they later heard it from somebody else? When I landed a new job, I struggled with the dilemma of when or if I should tell my new boss. If I told her, would she think I was physically weak or otherwise incapable of normal work performance? If I didn't tell her, would she become concerned when I asked for time off every three months for either a doctor appointment or a mammogram?
In the disclosure category, I also felt the need to educate new cancer patients at my office about breast cancer by giving them books or information that I found useful. Some women appreciated these gifts; others were frightened to have so much information thrust upon them.
Was I unlucky to have an incurable cancer, or lucky because I had an incurable cancer but was still alive? Because of the sneaky nature of breast cancer, I was convinced that malignant cells were still hiding inside me, about to poke through momentarily. If I had a pain in my leg, I thought the cancer had spread to my bones. If I found a bruise, I thought the cancer had traveled to my liver. If I coughed, it probably meant that the cancer was in my lungs. And if I had an episode of forgetfulness, then cancer had surely invaded my brain.
On the other hand, I felt lucky to be alive. Too lucky, I got off easy. Who was I to get away with being alive when other, younger women were dying from breast cancer every day? Within a year after my treatments ended, three young mothers that I knew died from breast cancer. I was overcome by the guilt of survivorship. Their children were small and dependent; mine were grown and self-sufficient. This seemed so unfair.
I suppose as a way to confirm that indeed I too was living on borrowed time, I formed an odd, new habit: I measured potential expenditures by performing cost analyses that included a factor for my life expectancy. When we considered spending $10,000 on a new kitchen, I calculated whether I would live long enough to justify the expense. When my dentist suggested I spend $4000 on braces to correct my shifting teeth, I tried to determine whether the ratio of cost to benefit made sense.
My obsessive thought patterns and behavior crippled me. Clearly, I needed more effective strategies for moving forward with my life. Two factors led to my recognizing this need and acquiring the necessary strategies: the passage of time and my decision to accept breast cancer as a chronic disease that would not rule my life.
The passage of time allowed me to gradually distance myself from breast cancer. Yes, there was currently no cure, but I was still alive so I decided to make the best of my life. Little-by-little, I honed strategies for dealing with the dilemmas of cancer disclosure, self-pity, and guilt.
It's always a judgment call, but now, I disclose my breast cancer history only if and when I think it's necessary. I resist the urge to reveal it to new friends until I know them better and only if I think they can handle the knowledge. (I told my boss after I was hired, but assured her that my health was fine and my work wouldn't suffer.)
I’ve stopped aggressively thrusting breast cancer information upon newly-diagnosed patients. If they choose to discuss their condition with me, I ask if they are interested in reading material that I found helpful. If they are, I am happy to provide it to them. If not, I don't mention it again.
To combat self-pity, I eat healthier and exercise more. I don't meditate every day, but if I find myself falling into a poor-me state of mind, I take a few minutes to clear my mind and focus on positive images. These health and meditation practices offer me a smidgen of the control over cancer that I felt when I was undergoing treatment; maybe they will keep breast cancer at bay and maybe they won't, but I feel and look better than I have in a long time.
The toughest thought to conquer is guilt. I still feel it every time I see an obituary for the death of a young mother from breast cancer. My strategies for dealing with guilt are to support breast cancer research and outreach, and although I'm not a very religious person, I give thanks every night that I have lived another day.
Strategies for living with breast cancer didn't unfold before me in a sudden, magical revelation; nor did I happen upon them in a book. It took trial and error and conscious effort for me to crawl out of the emotional drain that I had slipped into. The passage of time helped. With every passing month, I gained a little distance from the breast cancer monster.
These aren't perfect strategies, but for now, they're the best ones that I've got and they seem to be working for me. My antennae still perk up when I hear or read the phrase "breast cancer," whether it's a reference to new drugs, new diagnostic recommendations, or new trial results. And, I'm always nervous when it's time for my annual mammogram. However, breast cancer no longer controls all my thoughts and actions on a daily basis. I still occasionally perform cost analyses for large expenditures, but I removed the factor for my life expectancy.
In February 2010, it will be 15 years since my breast cancer diagnosis. While I can't completely eradicate thoughts of breast cancer, with time and conscious effort, I developed strategies for living with breast cancer without being obsessed or ruled by it.