thoughts on living with cancer


Midwest, USA
May 20
At the midpoint of the journey's life I found myself lost in a dark forest with no straight path I could see anywhere. M.L. Rosenthal's translation of Dante's La Commedia Divina Diagnosed with ovarian and bladder cancers, I received an entirely new subject for writing and a challenge to intensify the second half of my life.


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MAY 2, 2012 9:41AM

Getting a B in Chemo

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On April 19, 2007, facing my fourth round of chemo I wrote that I went to sleep, wearing one of the three new hats sent to me by a woman I’ve only spoken to on the phone. She’s the receptionist at the company I’m freelancing for, and she has decided to pray me well and make me hats. They are unique and adorable and make me happy when I put them on. This batch of hats came with her scent still on them. I’m not very good at identifying perfumes. This, I judge, if bottled, could be called Good Woman.

That wasn’t the only grace offered from that particular company. They were continuing to let me write for a United States history project—my editor had told me that it was mine and I wasn’t to add work to my list of worries. While researching, I learned that Lewis and Clark, as well as some of the men with them, journaled their way across the western part of the continent. They used journals typical for surveyors of the time—moroccan leather-bound, four by six inches, the same size as the index cards I was using to jot down insights about my treatment. I was delighted to know of this historic precedence, set by the group originally known as the Corps of Discovery. I was on my own Voyage of Discovery, my own corpus, the Latin word for body, the ground of exploration.

By my fourth round of chemo, about six months after our first meeting, my doctor and I had developed a bantering style of communication. My notebook and its lists of questions seemed to invigorate him. He came into the examining room asking, “What do you have for me today? I’ll see if I’m up to the challenge.”

Thinking that he’d spent more years in school than out, as I had, I reported that I was a solid B: bored, bald, bloated, belching. I complained about what I considered phantom pain on my left side.

“There’s nothing there to hurt,” I said.

“Well, of course there’s something there,” he explained, amused. “It’s not like those plastic models of the human body from high school science class, where if you remove a body part, everything else remains in place.

I wanted him to check my feet. “I know it’s not your area of expertise, but my left foot feels swollen on the bottom, on the pad.”

He took both my feet in his hands, judging their heft and weight, and moved them back and forth. “I can see no difference in these two feet,” he told me. “But I believe you are experiencing a difference. If it’s a problem, we should do an X-ray.”

I was emotionally torn at his pronouncement. I was annoyed that another procedure—which I was sure would show nothing, just as the X-ray the previous fall when my legs had swollen had shown nothing—seemed to be always looming. On the other hand, when had a doctor ever believed my report if he couldn’t confirm it? Later I realized that the sensation I was experiencing was the beginning effects of neuropathy. I suppose he knew that, but didn’t tell me.

 “I’ll do the hearing test,” I told him, then teased him about not pressing me to do it when he’d first suggested it.

“They tell us we should do a hearing test, but you said you didn’t want to.”

The term “pedantic twit” was invented for people like me. “I said I’m too busy, and I am, but I want to be the best damn little cancer patient ever, so I’ll do it.”

“We should have that stitched on pillows and give them out to our patients,” he said to the nurse, smiling as he wrote out a referral to an audiologist.

“I think they’d catch on after about fifteen of them had one that best didn’t mean so much,” she responded, laughing.

After hearing my other complaints—the white noise was better, but still present; the cisplatin wasn’t fun—he asked, “Do you want to continue with chemotherapy?” I was flummoxed by this, too, even though he’d said from the beginning that I had a say-so in my treatment. Ever suspicious, I wondered if he were simply trying to get me to collude with him, to become more of a stakeholder in the final two rounds. Or was this a real option, to quit two-thirds of the way? Whatever his motives, I didn’t like to think of myself as a quitter.

            “We’ll continue,” I said. “How soon can the port come out? Can it be by June 15?”

            “Not until after you’ve passed your nadir,” he said, referring to the lowest point the body reaches after a round of chemo. “At least three weeks after your last treatment.”

            That meant after the fifteenth. “That’s disappointing; I wanted it out by then so I can use a year of cancer as the subtitle of my book. A year and a week seems cumbersome.”

            “Personally, I think it’s more interesting, but I’m not going to tell you your business,” he said.

            “Well, I’m still on track with the original plan—write a book, make me rich, and you famous—even if I have to change the subtitle. Oprah will love you.”
            “I don’t think you keep a lady like Oprah waiting three hours because you were delayed in surgery,” he responded, and left me ready to start round five.


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the typical nurse's revenge after years of listening to physician 'humor' and errands- now a measure of feed back
I'm wanting to ask, has your neuropathy gone away? It's almost a year for me and my feet are still numb. Fingertips are better though so I don't want to complain.
Just passed the 14th anniversary of my mother's passing from cancer..I really can't tell you how much I appreciate your posts. You really are giving me a window into what she experienced and never talked about. You've got one guaranteed book sale here...
For what it's worth a friend of mine in Dublin went through three rounds of surgery, chemo & radiation therapy for cancers of the cervix, ovary and breast. Over the last three years she's survived it all, as well as a divorce and seen her little girl grow from age two to age five... she's in remission, engaged and plans to get married this summer. Everyone is different but I'm following you as you travel on your "own Voyage of Discovery," and hope you get to see the Pacific shore and wish the best for you on your travels back home.
Your writing and connection with people, even the world, will help you in healing, as it all interacts with the poisons killing your cancer. You aren't just surviving, you're overcoming and transcending.
Thanks for sharing your story. It will be a huge help to many. All the best to you.