A Few Things I Know About Cancer:
A Reporter's Notebook
By Gena Asher. This originally appeared in The Herald-Times in September 2002.
There are several notebooks that I've just recently shoved off the main portion of my desk. One is a green journal that I hope someday to no longer need, to burn in ceremonial fashion. The others are loose-leaf binders full of lab reports, copies of doctors' notes and scads of articles about breast cancer treatment and prognoses.
Like a lot of reporters, I'd rather write about anything but myself. In telling you about cancer incidence in Bloomington, I can't ignore the aspect of my own direct participation in those numbers. I am one of 97 Monroe County women diagnosed with breast cancer in 2001.
In light of my experience, and thanks to my green notebook, I can tell you a few things about cancer that you won't read in my other stories in this newspaper, details that numbers and statistics don't reflect. Maybe my reflections can lend a real voice to this stew of statistical data. Even though I know only about breast cancer, this may be information you can use: About one in three Americans will face cancer at some time in their lives.
Be your own advocate
It's natural to be rooted to the ground in fear when you are diagnosed, but don't stay there long. There are many choices to be made, and doctors expect you to participate in these decisions. Medical professionals, the Web, librarians and consultants at places such as the Olcott Center for Cancer Education are some of the resources to use in finding out all you can about your situation.
Some people find this task too much to handle, the information too bleak or scary. For me, finding out everything I could was empowering. I only researched a chunk of information at a time, reading about surgical procedures first, then waiting awhile before moving onto to the next treatment. It's too overwhelming to try to become a cancer expert overnight.
Information also comes in the form of second or third opinions. When you are panicked by a diagnosis, you naturally want to hurry toward fixing the problem, but take time to talk to other medical people. If all have the same analysis of your situation, you'll feel confident. If they have varying opinions, you'll need to weigh their advice against your own information and feelings. As a consumer, I always get three estimates for any kinds of repair work, so why would I not get several opinions from professionals with whom I would be trusting my life?
Support groups are for you
Find a support group. No matter how many friends and relatives are helping you, you'll find comfort in talking with people who have been through what you are facing. Initially, I figured support groups were for people who didn't have anyone else in their lives and I guessed that the whole scenario would be a Pity Party of the first order.
Instead, I found a set of instant friends, women who bluntly shared their advice and warnings about treatment and procedures as well as their emotional worries about their families and jobs. Driving home from that first meeting, I marveled at how often we laughed, often at macabre tales, and at the other women's candor. I had joined an exclusive club, and while I wouldn't wish membership on anyone, the support group experience has been enriching on many levels. I have seen women evolve from frightened cancer patients to comforting counselors for the next wave of newly diagnosed.
Watch what you say, but say something
Include friends and relatives in your medical plans. They may not be as open to listening to your Ode to Chemo Side Effects, and you may have to water down some of your reports as you note a friend's shocked face. (Save that discussion for support group, the best venue to get things off your chest). It is hard to gauge how much people want to know, how much is too much information. I'm sure there were times when I divulged too many details and other times when I didn't say enough.
On the flip side, if you are the friend or coworker, it's difficult to know what to say. I appreciated any kind of communication, especially e-mails, notes and phone calls full of reports of day-to-day activities. It was reassuring to know that the world continued to spin, and that it was waiting for me when I was ready to jump back on.
I have heard tales of co-workers who whispered questions about life expectancy as if anticipating a job opening, about a sister of a breast cancer patient who thought she had "caught" cancer because she'd always worried too much, and about husbands who refused to let their breast cancer patient wives express their worries and fears because it upset them.
The only thing I refused to hear were grim reports of someone's friend or relative who had had a ghastly cancer experience. I knew from my research about my own situation what could happen, but verbalizing this brought it closer to the realm of possibility. During treatment, I had a strictly "happy news" policy, which in the long run, made things easier for friends who weren't sure what to ask or say.
Build your medical team
If you have to have breast cancer, Bloomington is a good place to be. Ten minutes after being diagnosed, I had an appointment with a surgeon and a card in my hand referring me to the Olcott Center for Breast Health. Irene Somes called me a couple of days later to urge me to visit her office, which I did. I was swept into a medical vortex, which turned out to be a comfort.
Medical professionals involved with cancer patients meet weekly to discuss patients, ensuring coordination of each patient's treatment. This way, by the time a patient moves to the next doctor for the next part of treatment, the doctor already has files and records. Though I had already mapped out my own time line, I was reassured when a doctor called me to make sure I still was planning to arrange an appointment to begin his part of the treatment. I knew people were keeping track of me.
Cancer patients in treatment are not at their social best. Still, all of the medical people I encountered were professional yet compassionate, calm but concerned. The nurses were considerate of all their patients and knowledgeable about procedures and protocols, but also able to distract their patients who were stuck in chairs for hours of chemo, or in for a daily dose of radiation therapy with conversation.
The thing about hair
If there's one thing that marks a person as a cancer patient, it's hair loss. When told that their chemotherapy treatment will cause hair loss, many female patients wrongly believe this is the worst thing that can happen. I was much more worried about my brain, bones, skin and immune system than my hair. After all, you can buy hair. It doesn't hurt when it falls out and it always grows back, about the only body part that recovers fully to its original state.
Of the women I know, many opted to wear nothing on their bald heads. A few even said they welcomed people's questions because this gave them a chance to promote mammography during the ensuing conversation. To a woman, though, we are all thrilled to see the hair come back, and spend a lot of time in support group marveling over each other's heads.
Belief in cliches
I don't believe the books and theories about how cancer has made someone's life more meaningful. I understand the philosophy behind this idea, which is similar to the martial arts tenet to "take the hit as a gift," to learn to respond to what happens to you in a positive way. But surely the "hit" doesn't have to be cancer. Couldn't it have been a broken arm, a little psoriasis or some other karmic thump on the back of the head?
Many people say they reset their priorities when they have cancer. Some quit boring jobs, others quit doing housework, a few retire early and several I know have become cancer advocates. "Regular People" sometimes assume that once the person looks like she used to, she must be "back to normal." Post-treatment cancer patients know that there is a "new normal." Even if we return to jobs and family life of "Before," we are more likely to start living out a variety of cliches: we stop to smell the roses, we eat dessert first, today is the first day of the rest of our lives. This means that dishes may not get done, demanding bosses may not be tolerated, pesky relatives may not be absorbed into the family fabric and no energy will be wasted in anger at traffic snarls and rude people.
Not a survivor -- yet
This disease is rife with strange terminology. Cancer patients are warriors in a battle where the enemy is unseen, significant only in its symptoms, and sometimes, only the treatment's symptoms. There's some implication, too, that people have the ability to whip this enemy based on their personal character or combat abilities, and those who don't emerge victorious have done something wrong, not performed in some way. Then there's glib manner of describing someone's "bout" with cancer, a trivialization of the disease if there ever was one.
It's one thing to be proud that you lived through the treatment, that you didn't decide it would be easier to jump in a vat of acid, but it's another to judge someone's inability to beat cancer by the same rules we use to assess military prowess. Every cancer case is different from the next, and everyone's body responds differently. You just play the hand you are dealt.
Then there's that term, "survivor." The only thing I've survived is treatment. I'll be a cancer survivor only if I die of something else at a ripe old age. Technically, I'm only NED, "no evidence of disease," which sounds like a term that leaves a legal loophole for some future incident. Ultimately, no one wants to be defined by a disease. For now, I'm not sure if I have cancer or had it, if I'll be a "survivor" or not, but I do know what I am: wife, sister, daughter, teacher, writer, friend. Pick any one of those terms and I'll be satisfied.
I'm sure I will never put cancer out of my mind, never have even a slight headache without wondering if it's a sign of a recurrence. But at those times, when I feel cancer's breath on my neck or hear its footsteps behind me, I try to elbow it out of the way and walk a little faster.
