cancerdancer's Open Salon Blog

Nadir, the Lowest Point

Sun, 27 May 2012 21:05:03 -0400

On the first Thursday in May 2007, near the end of my chemo treatments, I considered giving up. After taking my Compazine, I threw up, for no good reason. I wondered if vomiting was a psychosomatic response to thinking about my chemo session the next day. On my way to meet a friend for lunch, I listened to the a cappella music group Anonymous 4 performing early hymns. When they begin singing “In the Sweet Bye and Bye,” I start to cry. I wondered, Why not just go there? Why fight so hard and feel so bad to stay alive? They tell us heaven is a better place—why do I stay here?

My mood eventually improved, even though I threw up again later. Small wonder—at lunch I defiantly ordered a salad with grilled steak on it, deciding that if I were going to throw up for no reason, I might as well enjoy steak.

Several people had offered me a place to stay during treatment if I needed one. For the first time after my hospital stay the previous fall, I considered accepting one of those offers. I wanted to stop working and being dependable for a bit, to stop fighting kindness and simply allow myself to be taken care of. I even fantasized about going on a cruise, although chemo heightened sensitivity to sun exposure—and I already have fair skin. What a bald, scabby-scalped woman who’d begun to lose even her eyebrows would do on a cruise, I had no idea. The idea of being surrounded by blue water and floating effortlessly nonetheless appealed. Still, I doubted that I could muster strength enough to pack or board a plane.

That evening I listened to Performance Today on my local classical station, feeling surprised, dismayed, winded, discouraged, and afraid. I wanted to call someone, but reaching out to a friend just because I threw up seemed a babyish act. Instead, I worked on the social studies project that was paying my increasing medical bills and decided I would henceforth listen to Mozart symphonies rather than hymns.

A former colleague drove me to the hospital on Friday morning. On the way, we talked of her upcoming marriage, of happy things. That was the last of cheerful conversation. After I arrived, Linda handed me a card with information about my port removal. The hospital had scheduled my surgery, but it was too soon after the final chemo, given my projected nadir. (Medically, the nadir is the point in each chemo cycle at which the body is weakest.) I caught the mistake; I’d need to call and get it changed. I was tired of being my own advocate, of recalling what I’ve been told or checking my notes. Ninety minutes after arriving, I was more than ready to go home, but my drip hadn’t even begun. I was still in the pre-chemo hydration and anti-nausea meds phase.

During that second chemo of Round 5, I cried after one of the nurses (not Linda) did some straight talking about the likelihood of recurrence. “It is the nature of this disease to come back,” she said, more bluntly than my doctor ever had. I wasn’t sure I could be brave enough to face a recurrence, another chemo regimen. I’d watched other women face it with equanimity and acceptance. How they had the grace, I did not know.

Joy—and Survivor’s Guilt

Fri, 18 May 2012 10:05:21 -0400

Five years ago today, I walked into the chemo room wearing a mortarboard and humming “Pomp and Circumstance.” I got my laugh and admitted that I’d stolen the idea from Suzie, who’d recently finished chemo in New Jersey.

Today I celebrate being alive, thrilling to the spring day, a cup of tea, a cat on my lap, an industrious woodpecker outside, brownies in the oven. I should be receiving flowers and telegrams of congratulations; the village should have teal ribbons tied around every tree. In reality, I will go to work in a bit and at some point have to face three days’ worth of dishes piled up in the kitchen. But I am breathing and doing well, seeing my doctor and getting blood work only every six months.

At the same time, it’s a bittersweet anniversary—Deb, Kay, Carla, Linda, Robin, Lynn, and Suzie, my sisters in ovarian cancer, are not here. There are no answers to why I still am; we all did the same things to take better care of ourselves. Some of us even had the same doctor and the same treatment at the same hospital with the same nurses. As that doctor says, “Every body is different, and every body’s cancer is different.”

Suzie I had known before my diagnosis. In fact, I thought of her as my insurance policy. We had a friend in common, which was how we met on one of my visits out East. I didn’t believe it was possible for God to give this mutual friend two women friends with ovarian cancer—it’s incidence rate wasn’t that high. My tumor was going to be one of those happy ending stories: “They took out a tumor the size of a melon, and it was benign.”

But that was only my script, one terrified woman whistling in the dark.

As these things go, everything during treatment went wrong for Suzie and right for me. They couldn’t get all of her tumor, because of the way it twisted around organs. Mine obligingly exploded, so the surgeon just had to run a Shopvac through my pelvis, after removing a lot of unnecessary parts. They couldn’t get her port inserted on the first try—they were going for a shoulder port, and she was buff from working out. This has never been a problem for me. Her port later got infected and treatment had to pause; my port was just fine, a little weird bump under my skin. She missed some chemo because her blood numbers were too low; with the help of nasty drugs, my numbers stayed high enough to sail through. She was on disability; I was able to keep working.

Even at the time I fretted over how well I was doing, which my chemo nurse kept reinforcing. I wanted Suzie to pick up her whole life and move so that she could see my doctor, who was surely better than hers! She did not, of course—she had family and a support system in place.

She recurred within two years. She died less than four years after diagnosis, after three separate chemo regimes. We were never close; we were polar opposites on politics and religion, and I imagine on a lot of other things. But I miss her, convinced she could be still living, still saying outrageous things and cracking jokes. Our mutual friend thanks me often for staying well, but I didn’t have anything to do with it. Not really. Cancer is a freaky thing, and although medical care and treatment have improved (fifty years ago, nothing could be done for ovarian cancer), it’s still a crapshoot.

I choked up in my doctor’s examining room after another friend died. “How do you keep doing this?” I asked. “They must have taught you something in medical school that I don’t know. My faith isn’t helping much right now.”

He’s a quiet, thoughtful man, moving easily from body parts and blood numbers to psychology. He would have made a great minister; people would have flocked to his church to hear him speak. “I can’t save anybody. I try to help people get to where they want to go—a child’s graduation, a wedding. We do the best we can, and we miss them when they’re gone.”

And, because HIPPA rules end at death, he told me that when the hospital called to tell him one patient had died, he thought they’d made a mistake. She wasn’t supposed to die. But she did. Life and death are not in our hands, and eating organic food and lots of Swiss chard won’t change that.

So, even though I know this is my life, I feel sometimes that I am living it for my now-gone sisters as well. When I tell my story, they are part of it. I’m going out East this summer. I plan to stop by Suzie’s grave and tell her how it’s going.

Prelude to Normal

Sun, 13 May 2012 20:05:23 -0400

I was taking all advice from anyone who’d been through chemo. One bit I had no trouble accepting: eating a carb load the night before a treatment. So on the evening before Round Five began, I drove to a nearby town with two friends to have dinner at a popular Italian restaurant before going to the cultural arts center. One friend was reading some of her poetry to what was a larger group than I’d expected to turn out, given that we were under tornado watch, and it was raining and chilly. Driving was a perk, making me feel competent, all the while knowing that I had a friend who would drive my car home if I needed her to.

For me, the strangest part of the evening was that for the first time in months I wasn’t the focus of attention. We talked only briefly about chemo, rightly concentrating on my friend’s success and this opportunity to read her work. I felt that I should have welcomed the change, a signpost on the way back to Normal. Instead, I felt off-balance, a bit lost for conversational topics. It was a good reminder of “real life,” where I am not always center stage and the station had a playlist of tunes other than all me all the time. My friend Ben had said all along that I shouldn’t get used to this level of attention—it would end. I was getting just a taste of that reality and finding the adjustment surprisingly difficult for a person who claimed she didn’t like the spotlight.

Feeling cold is a common side effect of chemo. I was three-fourths done with the treatments, and I was experiencing more side effects, which are cumulative. It was the end of April and 68 degrees in my apartment. Still, when I sat in my recliner, I turned on the heating pad. In the mornings, I wore a thick robe over flannel pajamas and wrapped up in the heaviest of my prayer shawls, a cap on my head, a heavy throw on my lap, and the biggest, fluffiest cat on top of the throw. Didn’t break a sweat.

The neuropathy had begun in my hands as well as my feet, a slight tingling, as when a body part wakes up after falling asleep. That it was more pronounced in my left hand worried me, because I am a lefty and dependent on my hands to do my work. It caused me to remember a friend who’d lost feeling because of multiple sclerosis and the way his hugs grew too tight because he couldn’t judge his own grasp. I didn’t want to suffer the same fate.

I passed on an invitation to a concert on Sunday evening, letting the free ticket go because I was too tired. I was still trying to walk daily, though, between rains, believing that being in the woods was healing. I’d learned not to wait until evening for my walk, because by then I’d be too tired to coax myself. The neuropathy made me feel as tentative as the tiny wildflowers that were cropping up. Still, I was unwilling to give up the perhaps-foolish attitude I have about walking: I have no cell phone and no pepper spray, not even a dog, and I nearly always walk alone.

On the last day of April I took my walking stick, even though I was going along a relatively flat route. Along the North Rim trail, the trillium had gone, but wild phlox purpled the path. At the bridge where I usually turn around before the trail gets onerous, I sat down in the shade. I listened to a stream running over the rocks and admired the Virginia bluebells. Finally warm, gathering strength for the twenty-minute walk back to the car, I took off my hat and allowed my bald head to enjoy the breeze. The summer before I had been jogging those trails. Now I relied on a stick for balance and support, but at least I was there.

Getting a B in Chemo

Wed, 2 May 2012 09:05:23 -0400

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.

Springtime in Chemo and Elsewhere

Sun, 22 Apr 2012 18:04:10 -0400

Round 4, 2007

One of the hidden blessings of chemo is seeing old friends in new ways. Today Marie used part of a vacation day to take me to and from chemo. So far, she’s coordinated meals right after my surgery, come by the hospital to read me Billy Collins poems, hosted an eating-and-movie afternoon extravaganza, offered her home for a post-chemo celebration, brought me two sprays of forsythia from her yard, and offered to sew some spring hats. She also calls periodically to ask if and what I’m eating. Tonight on the drive home, she, fellow introvert, asked if I’d prefer to talk or just be quiet, as well as asking if I needed to stop anywhere. The latter request is common; the former has never been asked directly before, and once again I appreciate Marie’s subtlety. . . This sort of thing happens, to one degree or another, every chemo run—a new appreciation for the gifts my friends have always had, and which I now need. No one person can be the ultimate, perfect, all-in-one-caregiver, but each person offers his or her gifts.

We stopped at a local sandwich shop on the way home. I didn’t think that I could eat an entire sandwich, bloated as I was from the chemo, but I did. It was snowing, as it sometimes does in April here, and after my nap I noticed that the snow was sticking. The beauty of it doesn’t move me, I wrote at 2:40 the next morning, in my manic post-chemo phase. I’m ready for spring. They’ve planted beautiful pink and white tulips on the quad at the hospital.

Marie had also checked out from the library a book she thought I’d like, Shouts and Whispers: Twenty-One Writers Speak About Their Writing and Their Faith. I’d read one of the essays, “Glory Into Glory” by Walter Wangerin, that evening over my supper. The essay concluded, “ . . . if . . . you’re willing to look with absolutely clean and clear eyes at what exists among human beings, if you’re willing not to lie to yourself about the maggots, you will come with healing in your wings.”

The idea of not lying to myself about the maggots hits hard, I wrote. I have done everything in my power to be upbeat, to think of healing images, to speak positive words—even praise for the dear people, friends and professionals alike, who are being so kind to me. I think Pollyanna gets a bad rap from those of us whose usual m.o. is cynicism. I don’t talk much about the maggots—when I tell people now about the white noise and sirens in my ears that could portend hearing loss, they are astonished, because I’ve not mentioned this before. Many of us have vested interests in seeing everything in a positive light, putting a good spin on everything. So, for example: Yes, today I had to get a shot of Aranesp to boost my white blood cell count, which hurts and which the FDA warns—are you ready for this?—may cause cancer. But the nurse gave me the injection in my abdomen this time, and it hurt less. And no one is making noises about take-home shots—isn’t that wonderful? But the maggots are there in the simple fact of my being in the chemo room at all, my belly swelling with the fluid that is to save me, in “losing” a day of sunshine and snow.

I wrote later that day, I’ve finally figured out that managing cancer is like taking a second job. It’s that time-consuming, or feels like it right now. In addition to chemo and the weekly blood draws, there’s keeping track of meds, making sure I don’t run out, and scheduling and keeping other appointments, such as those for massage and acupuncture. Everything is at least twenty minutes away. There’s making sure I eat right and get all my supplements. And the necessary times with friends, either in person or by phone, that keep me going. It’s a lot, and sometimes I weary of it all.

Yet grace was everywhere. The florist in my village has a Friday evening happy hour, with flowers at reduced prices. Over the years, I had come to know one young woman there. She was the one who had delivered the flowers sent after my surgery, and she continued to ask how I was doing. One afternoon I was running errands; on her break, she saw me and dashed across the street to ask how I was and to give me a hug. Living alone and solitary, I had few options for touch. A moment later and I’d have missed her, been on my car and headed home. It was crazy, I thought, to believe that some god had arranged my being downtown at the exact moment of her break. And yet, why not?

Even one of the phlebotomists where I stopped for the weekly blood draw so that Dr. Josh could track my numbers knew me—or at least recognized my hats. She asked how I was doing, how I felt, and I chose to believe that she and all the medical people really cared and wanted to know. As a child with scoliosis, the neckpiece of my brace the visible sign of my being (as I thought of it) deformed, I’d scorned and shrugged off the caring attention of adults, feeling they pitied me. I wanted, above all else, not to be pitied. Cancer turned me into one huge, needy vacuum cleaner, sucking up every ounce of concern and affection. And my friends were happy to provide both.

Beth thought we needed a transformative event and so arranged tickets to a Chanticleer concert at St. Peter in Chains, the church with perfect acoustics. Unlike poor old Peter, I was feeling quite liberated—I’d driven the hour plus to Dan and Beth’s, the furthest I’ve driven since chemo began. And there was the music, ranging from plainsong to modern, perfectly sung by twelve men in tuxedos. We were in the balcony with only a few other people; it seemed so regal that Beth said she felt like a queen in the fourteenth or fifteenth century, for whom her court musicians were performing. On the drive home, we talked deeply, as people will in the dark in a car. Now it is morning, and I have crept upstairs for a cup of tea and a half banana to tide me over until Beth awakens and stirs. My downstairs window looks out on the “Mexican” patio (Beth calls it Oaxaca—“Shall we have breakfast in Oaxaca?” she asked last night)—not yet lush with the plants Beth makes flourish, but full of promise. As my own life feels.