It's Not About the Hair: And Other Certainties of Life & Cancer

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by Debra Jarvis


  The replacement part seems to be slowly dropping, like the lighted ball in Times Square. I can only hope I don’t find it on my hipbone on New Year’s Eve. But I’m grateful for so many other things: the great care I received at the SCCA, my mensch of a husband, the fact that although I lost some hair, I still have most of it. In fact, I am going to grow it even longer and then cut it off and donate it. I thought it might be kind of cool for someone with cancer to have a wig made with survivor hair. So my hairdresser is just trimming it and coaching me on how not to look like an aging hippie.

  Someone said to me, “This cancer must be like Hurricane Katrina in your life.” Well, sort of. But where Katrina exposed corruption, deceit, and neglect, cancer in my life has exposed overwhelming love, care, and support. Now here is where I’m supposed to say what I’ve learned and what I’ll change in my life. But here’s the thing: Going through treatment is a lot like walking on a rope bridge. You’re so intent on getting to the other side, you have no idea over what you have just crossed.

  Or to switch metaphors, I’ve been in a deep mine for six months and have been digging my way out. When I emerge I’ll take some time to look in my bag and see what nuggets I’ve brought out. Some will be just rocks. But some will be gold. I’ll let you know.

  Love and Hugs,

  Debra

  Promise Breaker

  I let three months elapse between e-mail updates because I was in the daily grind of treatment. I worked at the clinic Tuesday, Wednesday, and Thursday. I received chemo on Thursday afternoon. I recovered Friday, Saturday, Sunday, and Monday. There was really nothing new to report. Just trying to get through.

  I continued walking the Deer Loop throughout the summer and fall. Amy asked Max’s owner again if he would give him or sell him to us, but again he said no. Like many cairn terriers, Max was wild about chasing a tennis ball. So I went over and threw the ball for him every day.

  So here I was halfway through my chemo, feeling a bit down, and generally mentally addled. I missed my brain. Chemo brain is a very real thing. It’s not just going into a room and forgetting what you came in for. It’s also forgetting words, people’s names, and who said what when. I started getting one patient’s story mixed up with another’s.

  I’d lean forward and say something to a patient like,“Last week you talked about how Pixie’s death made you think about the meaning of your own life. Do you have any more thoughts on that?” And they’d give me a blank look and I’d go, “Oh, wasn’t her name Pixie?”

  “Who’s Pixie?”

  “Your poodle.”

  “I don’t have a poodle. I have a shepherd mix named Larry.”

  “Oh, I’m so sorry!”

  Then I’d visit my next patient and say, “Mr. Shepherd, how are you?”

  “I’m not Mr. Shepherd.”

  “Uh, right. Larry?”

  Quality pastoral care.

  Chemo brain makes you feel as if half your neurons are not on duty, but instead are sitting around smoking cigarettes and sipping martinis. It was nothing like the pleasant buzz I got from a glass of wine. It was more like the feeling I got in high school math class when the teacher would explain something to me, and I’d wonder why he was speaking Swahili. I’d nod and look at the numbers on the page, but would have no idea what he was talking about.

  So I was in this befuddled state of mind just before our annual Labor Day trip to the beach at Iron Springs. We had been going there for fifteen years, the main reason being they accepted dogs. But even after our lab/dalmatian mix Cokey died, we continued to go. And now I had an overwhelming desire to have a dog at the beach. Specifically, Max. I ran this idea by Wes. He wasn’t enthused.

  “It will just be a hassle and his owner will never let him go.”

  Perhaps it was my daily association with Max that caused me to hang on to this idea with the tenacity of a terrier.We had to take Max to the beach.

  The day before we left I knew I had to act. I drove directly to Max’s house after work.This meant I was still in my work clothes, so I looked pretty upstanding and responsible.

  As usual Max was in the front yard and was delighted to see me. I threw the ball for him a few times before I walked up to the door and knocked.

  His owner answered the door. He was wearing shorts and no shirt and was pale and skinny.

  “Hi, I’m the woman who comes over and plays with Max. And I know this will sound really crazy, but my husband and I are going to the beach for five days and I’m wondering if we can take him. A little beach vacation for your dog.”

  His eyes widened and he actually took a step back from me as if I were a deranged bag lady.

  I felt desperate. I must have Max! I played the cancer card. “And since my mastectomy, and during all this time I’ve been on chemo Max has been such a big part of my healing.” He still said nothing and just stood there looking at me.

  “Well, think about it,” I said lamely.

  “Let me talk to my wife.”

  “Oh, okay!” I hastily scribbled my home phone on one of my business cards. “Here’s my number!” I hoped knowing that I worked at a big international cancer center would convince this man I could take care of his dog. I drove home whooping in the car.

  He called an hour later and said, “Okay, you can take him.” I was shocked, but then why would he mind? Max stayed out all day and all night.

  “Anything that moves, he’ll bolt,” he said. “So promise me you’ll keep him on the leash at all times.”

  “I promise.” My heart sank because that is the beauty of Iron Springs: the gigantic off-leash beach.

  “And if you want him to do his business, just say, ‘Do your business!’ And if you say it sort of loud, then he’ll do it.”

  I wanted to ask, “Does Max have business cards?” but I didn’t want to screw up the deal.

  We picked him up Thursday afternoon after my chemo. All they gave us was Max, his crate (with no blanket in it!), a ball, his leash, and some food. No soft bed. No other toys. I thought about what we would send with Cokey: her bed, her toys, her leash, her treats, her homemade food, and a five-page instruction sheet. So maybe we were a little over-protective. Some would say neurotic.

  Unfortunately my brain was badly scrambled after chemo. Honestly, I don’t know if it was psychological or physical or emotional. I forgot the napkins, the paper towels, the coffee canisters (which I had filled the night before), our latte mugs, our tea mugs, and enough bedtime tea. I left a carton of milk on the kitchen counter. But who cared? We had a dog!

  However it was eighty degrees in Seattle, and our car chose this day to have the heater stuck on the on position. Nothing we did could fix it. Wes had a headache, I was feeling sick, and Max was panting in the back. We rolled down all the windows but the noise and stink from the big trucks was unbearable.

  After four hours of this torture, we arrived at Iron Springs just before sunset. As soon as the three of us got on the beach, I knew when I died, I’d be shot straight to Hell because I kept Max on the leash for about two minutes, then let him go. I broke my promise.

  But have you ever seen a cairn terrier chasing sandpipers at sunset?

  He went after them in earnest with the kind of joy found in knowing your life’s purpose. All the hair on his face and body blew straight back so he looked like a streaking comet. Every once in a while Max would look back at us as if to say, “I’m doing my best to catch them and thanks for giving me the job.” He was a bullet whizzing through a cloud of birds against a pink-orange sky.

  It was breathtaking, staggering, hilarious. Both of us were laughing and crying and forgot all about the car, the headache, chemo, and cancer.

  Yes, I broke my promise.

  But all I heard was, You are forgiven.

  To See for Herself

  A few weeks after our trip to the beach, my mom came for a visit. As I said before, the imagination can be worse than the reality, so I wanted her to come to chemo with Wes and me and to see what h
appened. I also wanted her to see I was not an emaciated wreck dragging myself to work.

  As soon as I got her home and hung up her coat, I sat her down on the bed.“Let’s do the boob show, Mom.” I wanted to see her lumpectomy and wanted to show her my implant. She lifted up her blouse and unhooked her bra.There was just a small divot in her breast and then a scar under her arm where she had some nodes removed.

  I lifted up my sweater and she gasped. “Is that a tumor?” She was looking at my port.

  “No, no! That’s where they put the chemo in. What do you think of my breast?” I could see her eyes well up.

  “It looks good, honey.”

  She came to chemo with me a few days later. She had a nervous pinched look on her face. I introduced her to everyone as we walked through the infusion suite, and she seemed to relax a little. But once we got into my room, she sat in a chair between my bed and the wall, never took off her coat, folded her arms over her chest, made herself as small as possible, and watched the Food Network. Every now and then she would look over at me when Sherry was doing something like taking my blood pressure or accessing my port. She witnessed the whole procedure through glances.

  Sherry brought me warm blankets and cookies. “See, Mom? See how they take such good care of me?”

  I wondered if this brought back memories of my illness when I was an infant. Just before my mastectomy, I was talking to my dad and he said,“Sweetie, you were on that table as a baby and fifty years later you are on that table again.” Then he broke down crying. So I was sure this wasn’t easy for Mom, but she didn’t say anything.

  As usual the weekend was a low point for me physically. I wanted to take Mom to my favorite fabric store, to the bead shop, and to a clothing outlet, but I couldn’t get off the couch. She was sitting on the couch with me reading a cookbook when I laid my head in her lap.

  “Mom, I’m so sorry, I think I’m too tired to go out.”

  She breathed an unmistakable sigh of relief and said,“For once our energy levels are the same.”

  Early Parole

  I couldn’t keep my white blood cell count up so my oncologist would hold my chemo. The next week the count would be back up, I’d receive chemo, and then it would plummet again. I’d miss chemo, it would rise, I’d get chemo, counts would fall ad nauseam, and I do mean nauseam.

  My oncologist thought this was crazy, as I was already on what she called a “homeopathic dose” of chemo. Chemo kills rapidly proliferating cells like my white blood cells, so if there were are any cancer cells hanging around, which proliferate even faster, they were surely gone by now.

  I’ve known patients who felt very vulnerable and very afraid about stopping early. I didn’t feel that way. Deep down I felt this was the right thing for my body. It had gotten to the point where the cumulative effect of the chemo was overwhelming my body. I felt crumbly around the edges like the last cookie in the bag.

  Having cancer messes not just with how you look, but with how you think of yourself. I’ve never thought of myself as a delicate flower, more like a strong, sturdy dandelion. But here I was tired, weak, with wimpy white cells, peeling fingernails, and Effexor-dilated eyes.

  My patient Gloria said to me, “Get over it! It has nothing to do with your moral fiber. It is not an ethical dilemma. These are side effects, not personality flaws.”

  So I decided to continue to think of myself as a sturdy dandelion that was not cut down by the mower, but temporarily flattened.

  Great Lengths

  I hadn’t seen Rita since the beginning of my chemo, and she was in the clinic to receive her quarterly dose of Zometa, a bone-building drug that also prevents bone metastases. I knocked and stepped into her bay with a big smile on my face. She had a big smile, too, which promptly turned into a surprised frown.

  “You didn’t lose your hair!” she wailed.

  “Good to see you too.”

  “C’mere, is that really your hair?’

  I sat down next to her chair and she pulled on my hair.“Hmph. You must be on the Barbie chemo. Chemo-lite.”

  I would have been furious, but honestly, I was too tired. And it wasn’t like I hadn’t heard this before. I gave Rita my standard line. “I’ve lost about a fourth of it, but I had lots to begin with.”

  There is a hierarchy of suffering in the breast cancer world. The variables are surgery, chemo, radiation, and total hair loss. I realize total hair loss is a side effect and not a treatment, but it is a major variable.

  So the most sympathy goes to those who have had a double mastectomy, chemo, radiation, and total hair loss. At the bottom is a lumpectomy only.

  Hair loss trumps surgery, radiation trumps chemo. So even though I had surgery and chemo, because I didn’t lose my hair, I was down at the bottom. I didn’t really care because my friends and colleagues were supportive anyway. But I’ve talked with patients on CMF who stopped going to support groups because they felt so apologetic. They felt as if their situation wasn’t bad enough to warrant support.

  “We need our own support group,” a patient said to me. “Because those of us on CMF have all these pissy little problems but we still look pretty good.”

  Even more unhappy are women with DCIS. “I had someone tell me it’s not really cancer!” a woman said to me.

  “Of course it’s cancer,” I said. “It just means the cancer, the carcinoma, is still in your ducts. You know, the car hasn’t left the garage and driven down the highway. But there’s still a car in there.” I was pretty proud of this analogy, especially since “car” sounds like carcinoma, but I could see my laser-like wit was lost on her.

  I don’t know what it is that makes us competitive in our suffering. “You think that’s bad? Well, listen to this.” Is it oneupmanship? Is it ego? Is it a bid for attention?

  I’ve even had a patient say, “There’s a woman in my support group who I think is enjoying her cancer a little too much.” Enjoying cancer? I did not understand this.

  Then one night, Wes and I were in a restaurant when a bald woman came in and sat down at a table with her friends. She spoke loudly and sounded as if she was boasting to everyone in the place.

  “When I went for my chemotherapy last week, my oncologist was worried I might get an infection. So my nurse gave me a shot in my belly to stimulate my white blood cells.” Her friends were cooing in sympathy and patting her arm and squeezing her hand.

  I could see how someone might think, “She’s enjoying this a little too much.” But to me her voice sounded hollow and filled with need. Did it take cancer for her to get this kind of loving attention from her friends?

  The waitress brought our meals, and as we held hands for a moment of silent gratitude, I said a quick prayer for her healing—both physically and emotionally.

  Promise Keeper

  I loved Kari. She was one of the few patients who actually wanted to talk theology and Biblical history with me. But that’s not why I loved her. I loved her because she struggled with her faith, she asked questions, and she dared to reject some beliefs.

  “What do you think Jesus meant by this?” she’d ask. “Why was the Old Testament God so mean? Do you believe people who aren’t Christians are going to Hell?”

  I let her know the correct term was “Hebrew scriptures,” not “Old Testament.” It’s not old to Jews, only to Christians because we’re comparing it to the New Testament, which is correctly called the “Christian scriptures.”

  I felt like quite the mentor when I told her that or when I brought her books I read in seminary. But I felt like her teenage best friend when I brought in Christopher Moore’s hilarious novel Lamb about what Jesus did between the ages of thirteen and thirty-five. I handed it to her in a brown paper bag and said, “If anyone asks, you didn’t get this from me.” She loved it.

  We had the kind of easy friendship that comes from meeting every week, which unfortunately we did. I mean it was unfortunate because we were meeting at a cancer center.

  “How do you hear
God?” she asked me one day. I told her about Mr. Martha Miyagi. I even told her about the cedar tree in the fence. She said God often spoke to her through her children.

  “One day I was holding Peter on my lap and I started yelling at his brother who was spilling Cheerios all over the floor. And Peter reached up and stroked my face and said, ‘Be nice, Mommy.’”

  A few weeks after I was diagnosed, she said to me,“I left a gift for you on your desk that I think you’ll find helpful.” I returned to my desk to find a white baseball cap with the word “Cancer” embroidered on it. There was a little pink bow taped crookedly on the front and when I pulled off the bow I realized why it had been placed off-center. Underneath the bow was the embroidered word, “Fuck.” Fuck Cancer.

 

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