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

by Debra Jarvis

  “How long is this going to take?” Charlie asked.

  “Five plus three plus three equals eleven minutes, which is about the amount of time you spend watching commercials in a half hour television show.”

  “Hmph,” he said. Beth winked at me.

  And so we sat, hands like the Buddha, breathing. My mind was a hyperactive marching band consisting mainly of tubas and trumpets with the bass drum banging loudly on one syllable. The band played only one song that went like this: “OsteopoROsis! OsteopoROsis!” Then the piccolos came in with: “OsteoPEEEEEnia! OsteoPEEEEEnia!”

  After five minutes I said, “Palms down.”

  I could still hear the band in the distance. Palms down. Letting go of having things the way I want them. Palms down. Letting go of my expectations. Palms down. Release my perception of what it means to be strong.

  I opened one eye and checked my watch. “Palms up,” I whispered. The minute you do this, you feel like a child trick-or-treating on Halloween: open, eager, curious, expectant. It’s not so much, “Will you give to me?” but “What will you give to me?”

  Despite the fact that talking people and laundry carts constantly go by the sanctuary, I heard nothing but a calm, bright silence. In my mind I saw snow falling softly at night past the moon, past the stars. Everywhere I looked snow was falling on rocks and hills and trees. Beautiful sparkling flakes, a multitude of snowflakes, like blessings piling up around me.

  I was raised in the San Francisco Bay Area. It doesn’t usually snow there. It doesn’t snow that often in Seattle. So I can’t tell you why my mind turned into a mystical snow globe. But I can tell you that it was perfect, untroubled happiness.

  I don’t know how much time passed, but I gradually came to a sense of myself and very quietly said, “Allow your hands to rest upon one another again. And when you’re ready, open your eyes.”

  I could tell Charlie didn’t want to come back. Beth slowly opened her eyes and looked at the ground. Finally Charlie opened his, stared at his shoes for a moment, and then looked up at me.

  “This is something we can do together at home,” he noted quietly.

  “Yes.” I don’t know why we were speaking in whispers, only that it seemed like the thing to do. I think this is probably how the Wise Men were talking around the baby Jesus in the manger. I just can’t see them slapping one another on the back and yelling, “Yee-haw! It’s the Messiah!”

  We sat quietly for a few moments. I felt as if we just woke up from a communal dream, but I didn’t ask them about it. It felt too much like asking, “Was it good for you?” There are some things that are best left unexpressed. Yes, this is coming from me, Miss Tell Me Everything. They thanked me and we hugged goodbye.

  That night in bed I read this from the Sufi mystic Rumi: “All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? My soul is from elsewhere, I’m sure of that, and I intend to end up there.”

  I felt I was doing exactly what I was supposed to be doing. But was it possible that my soul was from a place of gently falling snow?

  Nine

  FLASH IN THE PAN

  From: Debra

  Date: March 20

  To: Everyone

  Subject: Flash in the Pan

  Dear Fabulous Friends and Family,

  It’s been a wonderful couple of months of drinking wine and eating chocolate. I no longer have to think about wearing port-accessible clothes. Saliva has returned from its pilgrimage to Spit Mecca and once again resides in my mouth.

  You may remember I said I would share any gold nuggets I am able to mine from this experience. There are days when I feel as if I have a glimmer of understanding about life. There are also days when I am awed by how little I understand. And then there are days where I am just odd.

  For example, last month Wes had a science meeting in Carmel. We were renting a car to drive from San Jose to Carmel. The nice lady at the rental car agency tried to talk us into an upgrade.

  “You know for thirty dollars a day more, I can get you into one of our prestige cars. A Lexus, or perhaps a Jaguar.”

  “We want the economy car.”

  “If you join our Gold Member Club today, I can waive the fee for the prestige car.”

  “We want the economy car.”

  “There’s a Jaguar sitting right out there. For just thirty dollars a day more—”

  At that moment I felt because we had to listen to her little schpiel, she could just listen to mine.

  “If gas were fifty cents a gallon, we might think about it. I’m a minister—what do I want with a Jaguar?” (Let me point out I never took a vow of poverty.)

  She sniffed. “Sometimes it’s just a matter of comfort.”

  I should never have told her I was a minister. I don’t often trot out that little fact, but since I had, I guess I thought I should give her a full-blown sermon.

  “You know, the Buddhists say it is not a good thing to get addicted to comfort. In fact, that’s my resolution for this year—to be comfortable with discomfort.”

  We finally got the keys to a Ford Focus that had a broken seat, broken armrest, and a trunk that you couldn’t open. But hey! I was comfortable with discomfort! Until the nuclear hot flashes.

  There I was at the science meeting cocktail party wearing nice, warm, corduroy pants, a sweater, a leather jacket, and a backpack purse. I was holding a plate of hors d’oeuvres in one hand, a glass of wine in the other, when suddenly the very center of my head became a pile of hot coals, and my own flesh began to cook from the inside out. Got to get out of the jacket! I looked desperately around for a place to set down my plate. No tables—just groups of happy, cool people.

  “So you’re from the University of Washington?” a woman asked.

  “No, my husband is. I’m not in science. I’m—cooking,” I said blinking sweat out of my eye.

  “Cooking. Do you own a restaurant?”

  “No, I—” The sweater was one of those hairy Angora things. I felt as if I were in the Mojave Desert wearing a leather jacket filled with evil guinea pigs. Have to get outside! Okay, my name is Debra Jarvis, and I’m addicted to comfort. The Buddhists are out of their no-minds!

  “Please—excuse me.” I ran out the door, set down my food and drink on the nearest bench, and tore off my jacket. I dug through my purse for my fan and then collapsed on a stone wall fanning myself and mopping my face with my cocktail napkin.

  “It gets pretty hot when there are so many people in there.”

  I was shocked to realize there was a man sitting on the other end of the wall. I knew he was a scientist from his name badge.

  I explained chemo had fried my ovaries sunny-side-up, and so now I was in abrupt menopause. He clucked sympathetically.

  Then he said, “I’m a cancer survivor, too.”

  He told me several years ago he was diagnosed with lymphoma, and had gone to the Dana-Farber Cancer Institute in Boston to get a bone marrow transplant. They were waiting to get some new protocol up and running, so they delayed his transplant. He was worried about the delay. But while he was waiting for his transplant, he had a spontaneous remission.

  “Wow!” I said. “What do you make of that?”

  “Well, of course, there’s an explanation. My blood made some tumor killing cells.”

  “But what about the fact that your transplant was delayed?”

  He was silent for so long that I finally said, “I bet as a scientist it’s hard to accept the mystery of that.”

  “Yes, it is. But I do.”

  If he hadn’t had to wait, his body would not have had time to heal itself. What he was most worried about, the delay, is what allowed his healing. His story reminded me that often the healing, the miracle, happens while we’re waiting or when we’re looking the other way. Then—like a cat that has crept silently into the room—we suddenly find the miracle in our laps.

  “By the way,” I said, “what’s your area of research?”
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  “Cancer,” he answered.

  He was a scientist, a person who looks for explanations and understanding, yet even he recognized a mystery. Perhaps it’s what we do with our mysteries that is most important. He decided to study his.

  The dreaded hot flash led me to this man and his miracle story. I think this mystery is one to be shared, not studied.

  Love and Hugs,

  Debra

  Growth Spurt

  You can never predict if or when people will grow from their cancer experience. Cece was the perfect example. She was a jet-setting clothing designer and flew all over the world and wore great clothes and shoes.Then she was diagnosed with breast cancer. I met her the day she came in for her first infusion. I walked in her room, and I could feel the anger radiating out of her. It was like standing next to a bonfire. She took one look at me, and I could tell she was furious. In spite of this I visited her during her six months of chemotherapy.

  We kept in touch, and a year later we went out for lunch.

  “There’s something I’ve been meaning to say to you,” she began.

  How can you not get nervous when somebody says that? It’s like when someone starts out, “No offense—”; nothing good can ever come after that. But I forced myself to smile at Cece and say, “What’s that?”

  “When I first met you, well, I was so angry and bitter that you were beautiful and healthy. I felt all the healthy people were looking at me with pity. I was enraged every time I came in for chemo. But you never flinched.”

  “Oh, I flinched,” I said. “You just didn’t see me.”

  “Yes, but you kept coming back.”

  “I knew you would work through it.”

  “That’s nice of you to put it that way,” she said. “But I felt more like a kid kicking and screaming and having a tantrum. I can’t believe I finally found some inner peace.”

  “How do you explain it?” I asked because I’m always on the lookout for ways to find inner peace.

  “Well, I was sort of forced to lie still for a few months. It was only after I got quiet that I could hear God. I thought I was a good enough person and didn’t really need God. I never thought too deeply about anything, but boy, does having cancer make you think. And I found that all the superficial crap I worried about working in the fashion industry is just that—crap. It’s really fun when you are twenty but sad when you are forty and still worrying about what other people think of you.”

  It’s pretty common to have a time lag between diagnosis and treatment and spiritual growth. Patients have said to me, “I’m trying to grow from this, I’m trying to find meaning, but I just can’t stop crying.”

  I usually say, “Maybe it’s too soon to grow, and all you can do is feel shitty right now.” I know what it’s like to be a pain-avoiding overachiever, and I learned you couldn’t rush personal and spiritual growth. If you could, I would have done it all in high school while I was dealing with acne and feeling overweight. But you can’t and there is an undeniable incubation period between trauma and growth.

  That’s why I love seeing patients a few years after they’ve completed treatment.They’ve come out of the mine and have had time to sort through the bag of rocks and pick out the gold nuggets. They’ve crossed the rope bridge, have made it to the other side, and can look over what they’ve just crossed and discover who they have become.

  The Days of Wine and Chocolate

  I’m not a big drinker. What I really missed about not be able to drink wine was the ritual. I missed the way Wes would ask, “Shall we open some wine?” as we were rooting through the refrigerator getting dinner together.

  I would laugh when he opened the bottle with that silly, rabbit-shaped opener, because every time he would say proudly, “So easy!” I loved the sound and smell of the wine being poured, the clink of the glasses, the kiss. We tried to keep the ritual with Crystal Light, but it wasn’t the same.

  It reminded me of youth pastors who, in trying to be hip, used Coke and M&Ms for Communion. Please. I suppose if you were trapped in a snack shack at the county fair and that’s all there was, and you wanted to receive Communion because it was clear you were going to die before someone rescued you, well, then I think it’s okay.

  Anyway, at first when wine started tasting bad to me Wes would say, “Let’s open a different bottle! Maybe this one is too dry.” But when we had so many open bottles that it looked like a wine tasting, he realized it was useless. After a while he stopped drinking wine, too.

  I think everyone with cancer struggles to keep domestic rituals. Nancy finished six months of chemotherapy and had a mastectomy. Her three-year-old son Riley was used to snuggling up to her every night before bed.

  “So we told him Mommy has a “soft” side and a “tender” side, and he could snuggle only on the soft side.”

  “Was he able to remember that?” I asked.

  “Oh, yeah,” she answered. “I started to shake hands with my doctor and Riley piped up, ‘That’s her tender side!’”

  You just do what you can to keep life normal. The hardest ritual for me to keep was eating dinner with Wes. About halfway through my chemo was when everything changed. It was as if my taste buds, who all these years had been wearing khakis and polo shirts, suddenly started wearing leather vests and jackboots.

  To me, eating was more than simply putting food in your mouth, chewing, and then swallowing. I could do that. But what I couldn’t do was enjoy the same foods he did. All I wanted to eat was pineapple, pickles, nopalitos, sour olives, and salad with Italian dressing.

  So gone were the moments when we would take a bite of something, look at each other and say, “M-m-m-m-m.” Eating was no longer a shared experience.

  The only exception to this was steak. I was anemic, and my oncologist was pushing red meat like a waiter with last night’s special. I was thrilled we could eat steak together, and I was thrilled we could afford it. But Wes comes from a happy family of heart disease, so we really didn’t do it too often.

  I said, “If you have a heart attack and die because we’ve been eating steak because I had cancer—” Well, I couldn’t even finish that sentence. It was too ridiculous.

  So I was looking forward to being able to eat again. I somehow thought I would wake up one morning and, ta-da, the taste buds would be back! But that’s not how it happened. It was gradual like an incoming tide. About two weeks after my last chemo, I found myself eating a piece of cheddar cheese that had formerly tasted like Playdough. A few days after that I sipped some wine—not exactly drinkable, but getting there.

  At Christmas a friend arrived at my door carrying an elaborate two-foot-tall chocolate Santa Claus. His eyebrows and beard were in white chocolate. His belt buckle and boot were in dark chocolate. I was stunned at his size.

  “All I can tell you,” she said, “is it didn’t look this big in the catalogue.” Everyone who came over took a picture with the giant chocolate Santa.

  I didn’t want to cut into the Santa until I was sure chocolate tasted good to me again.This was no drugstore chocolate Santa, it was Dilettante chocolate. I wanted the day to be something special. And it was—the Academy Awards.

  I wish I could tell you I did this delicately, like some kind of skilled surgeon. But the truth is, somewhere between Best Animated Short Film and Achievement in Costume Design, I took a cleaver and whacked off his head. His head broke into several pieces, the largest of which was his face. I dumped it into a little bowl.

  “Eeww,” said Wes. “I don’t think I can eat him with his face looking up at me.”

  “Okay, I’ll take care of it.” I took one last look into Santa’s chocolate brown eyes and carefully placed his face into my mouth. He was delicious—just like I remembered chocolate. That was my defining moment, that’s how I knew I was getting something resembling my old life back.

  But I know it’s different for everyone.

  “I think what I loved most was getting my fingernails back,” Mary told me. She grew u
p in Britain and always wore suits to her infusions. Her fingernails were a mess from the Adriamycin, so she began wearing gloves to the clinic. The first time she did this, I made her a cup of tea in one of our paper cups and brought it to her on a plastic tray.