Living With Cancer
by Dorsey Hampshire © 1991

It was just over a year ago that I had to tell my family that I had cancer--for the third time. My older daughter Elizabeth wrote me a five-page letter. She spent several pages expressing her rage. She said that she was, "mad enough to stomp bunnies." I had forgotten that expression. It had been a favorite of Elizabeth and her sister Susan when they were too young to use "real words." It expressed their feelings exactly. I, too, was mad enough to stomp bunnies.

I had first learned that I had cancer on my birthday in September, 1987. It was discovered when I was undergoing surgery for an unrelated ailment. I was lucky that the tumor was large enough to be seen and that it was seen. I was unlucky it that the biopsy showed that the cancer had spread to nearby lymph nodes. Soon after recovering from the surgery, I underwent six weeks of external radiation therapy.

In early 1989 biopsies showed that the cancer had returned and in February of that year I underwent six days of implant radiation therapy. In early 1990 there was still another recurrence. Ultra radical surgery was the treatment of choice until further testing showed that the cancer had metastasized to the lungs. Surgery was no longer an option and I started chemotherapy on March 28--a year ago.

I had ten courses of chemo with various combinations of six drugs--one with the delightfully sinister name of cytoxan, another the infamous cis-platinum. None of the drugs reduced the size of the tumors although some seemed to decrease their rate of growth.

In February of this year I started still another type of treatment--hormone therapy. There is a one-in-six chance that the tumors will shrink. Unfortunately, it is 100% guaranteed that I will gain weight.

So tonight I am talking about living with cancer. In my own mind I just started doing that during this last year--since the beginning of round three. For the two-and-one-half years before that I had thought having cancer was rather like having pneumonia. You're not happy with the diagnosis but you take your medicine, drink your orange juice, and do what the doctor prescribes and pretty soon you slip into the comforting past tense of, "I had pneumonia." But the cancer didn't conform and about the time that Elizabeth started stomping bunnies I came to the realization that my cancer was a truly irregular verb with a present and a future but probably lacking a past tense.

The important point, and the one idea that I would like to stress tonight, is that I am living with cancer. I am not dying of cancer. Of course, I'm going to die someday. Everyone over the age of 19 realizes that there are no exceptions to that basic rule of life. But until I do die, I am determined to keep on living.

Believing that one is living with cancer doesn't mean that from now on I can glide effortlessly through this best of all possible worlds. Number-two Daughter Susan, and best friend, Bobbi, have both had to hold my hand through several tough times. After the first treatment with cis-platinum I hallucinated for three straight days--72 hours--hearing a university marching performing their half-time show right in my bedroom. There were at least 76 trombones and I haven't felt the same about football since.

There are days when I feel like I'll live forever and still there are occasional days when I wonder if I should buy milk by the quart instead of by the gallon. (David promises that as long as I don't buy skim milk he will take care of any leftovers.)

In the vesper service on Valentine's eve, I was in a half-gallon--or maybe a one-quart--mood and had chosen to read a poem of Barbara Sigmund that came very close to expression my own feelings. The poem was so out of keeping with the others read that night on the subject of "Love" that when my turn came, I passed. I've asked NancyAnn Graham to read it tonight.

Ode to My Cancer-Ridden Body by Barbara Sigmund Hey, old buddy, When did you decide That you and I aren't Best friends any more? I had learned To strut your stuff As well as I could do, Though face it, dear old friend, You and I weren't getting Younger, though I Covered up that fact As best I could, For you, old thing, As well as, dear, For me. We had such fun together, You and I. The baby I, With mouth and eyes and hands Spent endless days In open admiration For your skills. My homage continued As a gangly girl And astonished adolescent Faced with the endlessness Of that monthly flow. (No will you, won't you To the dance, my dear. You were in charge on that one.) I never ceased in my wonderment For all the things You knew to do so well Without my telling you, Pulling out childbirth As your smug, trump card. I should have known, I guess, When you showed So little interest In your favorite Old tricks, And your lovely, languid liquids Had dried up, And the lakes of your deliciousness Had shrunk to a mere Trickle, That you were up to newer tricks, My love, In places still more secret And more cunning Than even those That gave us such delight. Despite it all, I still love you, My first and oldest friend. When did you decide You don't love me?

Occasionally, especially now that I can't work a real, 40-hour-a-week job, someone will ask me why I stay here in Virginia. Since Thanksgiving of last year I've had a new reason for staying here, but even before that I had decided to stay put. I have considered moving back to Illinois where I was born, or Ohio or Indiana where I grew up, or to Michigan where my family live now. But I know that I am remembering the Robinson of my grandparents, the Ashtabula of grade school, and the Chesterton of my high school and college years. None of those places exist today. Today I belong in Virginia.

So much of my life is now centered around this church and its people. I could never have made it without the help and encouragement of Kim, and Joan, and Connie, and Dotty, and Shirley...and all of those who scraped and painted, and planted petunias, and went shopping, and brought meals, and held Susan's hand, and kept me supplied with ice cream--and those endless trips around the beltway for treatment!! How we cheered when Kaiser moved the Oncology Department from Springfield to Falls Church.

You sent me cards and letters, made phone calls and brought me both chairs and coffee in the Social Hall after services. I am ever so grateful.

Even the people at Social Security were pleasant and Mr. Lefcowitz at Fairfax County's Department of Human Development patiently assured me that one-in-six Americans receive food stamps and that, after all, why did I think I had been paying those taxes all these years? I had never even seen a food stamp until I received my very own.

Three people sent me copies of a New York Times front-page story in February which covered a new concept called chronic cancer. With the new treatments available, people who may have died quickly five or ten years ago, now can control their cancer and some are living 25 years or more with active cancers. Another 25 years and I'll be beyond my present life expectancy! The article quoted a doctor as saying, "Some people feel we're prolonging living, other say we're prolonging death." Obviously, I'm on the side of living.

Some of you suggested activities that I might be interested in or books to read. (I did try one support group, but it was such a mismatch that I didn't try again.) Gilda Radner's highly praised book came out just when I was going through the ickiest chemo. Susan found a copy at the airport on her way to a conference in Toronto and promised to pass it on when she got back. When the book didn't arrive I asked her about it and she said she didn't think I should read it. Gilda Radner was a great comedienne but an abysmal role model as a cancer patient. She apparently had absolutely no common sense and tried to solve her problems by having tantrums and screaming at the people trying to help her. Susan didn't want me to get any wrong ideas. I pulled rank ("I am your MOTHER"), she sent the book, I read it, and I agree with Susan.

Another big disappointment was Bernie Siegel. According to Love, Medicine, and Miracles I caused my cancer because it gives me something I can't get otherwise--it is a way of expressing my innermost self. Peace, Love, and Healing is slightly more rational--but it is still a bit too much for me. (An example: a woman hates her husband, she gets an incurable cancer, the husband dies, and suddenly the woman completely recovers.)

This might be a good moment to discuss something else that really bothers me. Sometimes when I say that I have cervical cancer, women ask (and I do mean women--sexist language is appropriate here) women ask, smugly, didn't you have your Pap tests. Yes I did--once a year for the last 150 years. You should know, however, that even if the best trained doctor scrupulously follows the recommended methodology for taking the cell samples, the slides are prepared correctly, and an experienced, well-trained professional examines them, abnormal cells or cervical cancer will be detected in only 80% of the cases where it is present.

This is because 80% of cervical cancers are squamous cell carcinomas--a cancer found on the skin or surface of other structures, such as the mouth, lungs, or cervix. I do not have squamous cell carcinoma. What I have is called adenocarcinoma, a cancer more commonly found in the glandular cells of the body. The Pap test is useless in detecting adenocarcinomas.

If you thought that sounded defensive you're probably right, but I do get exasperated with the idea that either through some lack in my personality or due to laziness in carrying out routine preventive health procedures, I am solely responsible for my cancer.

Once again, Barbara Sigmund expresses it much better than I can. I've asked Rose Ashcraft to read her essay, "I Didn't Cause My Cancer," which first appeared on the Op-Ed page of the New York Times in late December 1989.

I Didn't Give Myself Cancer by Barbara Sigmund Whatever happened to the tragic sense of life? In late October, a medical exam revealed that my eye cancer--an ocular melanoma--had spread to various parts of my body. Very soon thereafter, the self-help books started arriving. I had caused my own cancer, they told me, so it was up to me to cure it. "Bull," exclaimed my husband, when I informed him of having this interesting new fact to face so soon on the heels of the news itself. (When my husband exclaims like that, you must understand, the bull can still be seen on the not-too-distant horizon.) "What about babies? Did they cause their own cancer"? Good question, and one that I had reason to contemplate directly. A few days later, I watched three, four, and five-year-old kids with cancer dance, sing and play insouciantly at a dinner for the Emmanuel Cancer Foundation, a New Jersey society set up to support children with cancer and their families. Clearly, these children had not "caused" their own cancer through "stress" in their young lives or "lack of self-love" or a "need to be ill" or a "wish to die." No, they had been struck by a hydra-headed sickness that lists where it will. And so it is with most of us with cancer. I did not cause my own disease. Overexposure to the sun is the only known suspect in melanoma, but the sun hasn't glimpsed my head unhatted nor my skin unoiled for decades. Only people who deliberately use or expose themselves to proved carcinogens can justly be accused of self-inflicted cancer. Perhaps, then, I've just been too "good," although I can muster a sizable loyal opposition on that one. In a turnabout of the age-old agonized question asking why bad things happen to good people, we are now told that--aha!!--bad things happen only to good people (so repressed, you know). Cancer cells are internalized anger gone on a field trip all over all bodies. Give me a break. But, say the gentle proponents of the self-cure books, what you are objecting to is merely "the dark side" of those theories. Don't forget, I'm reminded, these books also tell you how to heal yourself. Yes. And everywhere I turn I see evidence that the last frontier of rugged individualism in American is relentless self-belief. Even in the beauty parlor, I run across a book excerpt trumpeting, once again, that the only limit on the success and happiness we can achieve is the belief in limits themselves. No racism, sexism, sickness, poverty or just plain lack of talent need apply. But, alas, there is more to fear than fear itself. Evil, illness, accident, injustice and bad luck strike the self-improved and unimproved alike. Does this mean I don't believe there is any merit to theories that positive and more loving attitudes can't help us bear and possibly cure our sicknesses, even cancer? Or that changes in ourselves and the way we live can't influence these things? Of course not. After all, almost 2,000 years ago, Jesus instructed the man he healed at the Bethesda pool that he should go his way and sin no more. But seven years ago, I lost my eye to cancer. This time, the odds are better than even that I will lose my life. And it simply doesn't help to tell me that, rah-rah-sis-boom-bah, I can beat the odds if only I learn to love myself enough. Of course, I want to live. I'm at the top of my form, happy, useful, looking forward to new challenges. My boys are in their early twenties now, and I want to see their lives unfold. And I long for that first merry dumpling of a grandchild, whom I can all but taste and feel, should one of those boys ever get around to doing this duty. But if I die, I don't want to feel like a failure. My doctor tells me I've embarked on an unknown trail. He does' know of anyone else with melanoma who had undergone my particular chemotherapy. It's scary; I want the dignity of that reality. I want to face the reality of randomness in life, as well. We humans would rather accept culpability than chaos, but randomness is the law of life. That's not altogether bad. As my youngest son reminds me, the chances of getting better are better than my chances of ever having been alive at all. It's dicey, though, by definition. I continue to need all of the prayers and good wishes, positive energy fields and love that I have been graced with these last weeks. I also need friends who tell me they kick at doors and utter foul words on my behalf. It isn't through lack of love in return that I report that picturing white blood cells as so many little men of war against the cancer cells, "imaging" techniques, or a no-nonsense American determination to redirect their lives may be fine and life-giving for others, but not for me. I'm sticking with the medal of Jesus and Mary around my neck and novenas to St. Jude. It's strictly a utilitarian decision. The data base of success stories is larger by far. And I can always fall back on that eighth century scamp, Eric the Viking, who bellows across the centuries, "You can fight the gods, and still have a good time."

Barbara Sigmund was a Roman Catholic. I have no medals--neither Mary and Jesus nor any other. (I don't even own a Unitarian flaming chalice.) St. Jude has always been one of my favorite saints--anyone who deliberately takes on desperate causes just has to be more than a little crazy and an okay sort of guy--but I won't depend on him for good health.

Those of you who know me, know my prescription for living--lots of love and lots of chocolate. Now, there are at least as many expressions of love as there are kinds of chocolate, and if you consider the varying possible intensities or quantities of each, I bet I've got at least 25 years of research ahead of me to finish calculating the optimum amount of love and chocolate needed to cure my particular cancer. And I expect to have a delightful time doing the experiments.

Page created August 1998. Original material © Betsy Vera (bentley@umich.edu). Page background source: Jay Boersma. This website is for information and entertainment purposes only and is not intended to infringe on copyrights held by others.