Living With Cancer
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.
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.
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.
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