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

by Debra Jarvis

  “I did!” he said proudly. “I just want to shine it up.”

  “Well, sometimes the simplest words are the best,” I said carefully.

  “Nah!”

  I didn’t argue with him because it wasn’t important.What was important was the fact that he found a new meaning in his life, was getting up in the morning, was writing thirty pages per week, and was writing about things that were heavy on his heart: poverty, racism, rage, violence, and death.

  His mother said to me,“He gets up every morning and gets dressed before he starts writing. He wasn’t even getting dressed before.”

  Jackson had talked glowingly about Charles Johnson being his professor.That gave me an idea. “Jackson,” I said,“I am acquainted with Charles Johnson. If I happen to run into him, may I tell him about your book and how I met you, here at the cancer center? Maybe give him your phone number?”

  “Oh, yeah, sure!”

  Of course I’d rather surprise him, but I couldn’t tell Charles Johnson anything without Jackson’s permission or I would go straight to HIPAA hell.

  Here’s how well I knew Charles Johnson: I had been in a stationery store one day and he was one aisle over from me talking to someone about which school he was sending his daughter to. Yeah, we were really close buds.

  So I e-mailed him, explained the situation and would he consider calling Jackson?

  He wrote back that he would love to. So this is where I think angels take on all kinds of different forms. Charles not only called Jackson, but he arranged for them to meet in his office. He sent Jackson a huge packet of writing exercises and essays, all things that he would give his graduate students.

  Jackson came into the clinic the next week and said,“Professor Johnson called me.” And then he sat there for my entire visit with this blinding grin on his face.

  I think Charles, or Chuck as I started calling him after a few e-mail messages, was both a messenger and a guardian angel for Jackson. His message was, you are valuable, your writing is important. And as guardian he was like the angel in the lion’s den because Jackson felt he had this important writer in his corner, and so his life was worth fighting for.

  I don’t know what this novel meant for Jackson. Only he could say what it meant for him, but here is what I wondered about: Jackson was one of the sweetest, most compliant and gentle men I had ever met. Was Richard, the brave, take-no-shit protagonist his alter ego? Was Mike, the archenemy, someone he really knew, or was it possible that Mike was the symbol of his cancer? So he was always fighting Mike and nearly destroying him.

  The other thing I wondered about but am now sure of is that I was the only white person to hear his feelings about prejudice and racism. Every week he said to me, “I’m writing it like it really is!” And every week I grieved for the way he saw it.

  I Walk Therefore I Am

  I was more religious about my morning walk than I was about going to church. In July in Seattle it’s light by 5:30 a.m. I loved getting out the door by 6:00 a.m. and walking what Wes and I referred to as the “Deer Loop.” We called it that because atop one of the houses is a very realistic life-size deer. It’s not clear why the deer is there 365 days a year, but we like it. Whenever we pass it, I wave and call out, “Hi, deer!” I love that it sounds as if I’m greeting a loved one.

  I walk fast—fifteen-minute miles. Wes calls this Chihuahua walking because I’m short and take a lot of fast little strides.

  I found these walks both grounding and energizing. Watching the changes in everyone’s garden, hearing the flickers and the crows, reminded me that life continued on around me. There was more to the world than just my chemo, my job, and me. And then something else began to happen.

  It all started with the new cedar fence.

  At this point I had walked the Deer Loop over fifty times and was pretty familiar with everyone’s yard. Since every day felt so unpredictable to me, I liked the predictability of doing the same walk every morning. So I would do the usual walk past the deer, half a mile later have my ten-minute love fest with Max the dog (whose owner refused to part with him), and then continue on.

  The cedar fence appeared about three-quarters of the way through the walk. It had magically gone up in the twenty-four hours since I last walked by, and I smelled it before I saw it. When I came upon it I stopped dead in my tracks and took a deep breath. The fence was strong and handsome. Unlike, say, a white picket fence, which is prissy and demanding and hard to please.

  The fence was made of carefully milled, cut, and nailed planks. It was just a cedar fence. But as I stood before it I could feel the power of the tree in the fence.

  Look deeper and see out of what I am made.

  It was Mr. Martha Miyagi and yet it was not exactly the same voice. It was the fence, no; it was definitely the Divine, the Presence, the Spirit. I didn’t have time to stand there and contemplate this mystery because I had to get to work. So I hurried off.

  Here in the Pacific Northwest, cedar is a big deal, especially to the Native Americans. They make totem poles, drums, baskets, clothes, and masks out of cedar.There is a story that the spirit of a powerful and loving medicine man resides in the cedar tree. I love this because we have several cedars in our yard, and I’ve always felt their power. Anyway, when cedar burns, the blaze reminds everyone of the tree’s great healing power. The aroma of cedar reminds everyone of the medicine man’s great love for his people. So that’s why cedar is used to pray for people.

  Later that day I met George, an elderly man with esophageal cancer. He was frail and bent over. He was pretty quiet with everyone, but since he was a new patient, I stopped by to say hi and introduce myself.

  At first he didn’t say much, but the television was on with a story about Iraq. This is how we got on the subject of war, and then he began telling me about being in World War II. He talked about seeing men die before his eyes, about staying in a foxhole for days, about not wanting to die.

  As he talked, I saw that deep inside he was not weak and sick but strong and powerful. I could feel all the love in and around him. I saw the tree in the fence.

  Look deeper and see out of what I am made.

  “I’m not afraid to die now,” he said. “But I hope this chemo works. There’s still some livin’ I want to do.”

  His hope for healing was not born out of fear of death, but love of life.This is a very good thing. When people love life more than they fear death, they come to treatment with open hands, open hearts, open eyes. When people fear death more than they love life, they come clinging and clutching and grasping. Holding the breath. Furrowing the brow.

  “I’ve seen many people die, includin’ my wife,” he said. “And her spirit just sort of eased on out.”

  Before I left I squeezed his hand and said, “You are your own medicine man.”

  He nodded and gave me a big grin.

  The cedar fence was the beginning of the Spirit speaking to me in ways other than the Mr. Martha Miyagi voice in my head. That still came through, too, but now I perceived the Divine in all kinds of different things.

  What’s in a Name?

  Words are powerful. That’s why people paste up affirmations on their bathroom mirrors like, “I accept myself just as I am.” That’s why people memorize scripture and poetry and mantras.

  God said, “Let there be Light.” And there was light.

  “Lather. Rinse. Repeat.” I never questioned it.

  Words can call something into being.Words can also destroy.

  “Hi, I’m here for my poison.” I had a patient who used to say that every time he came in for his chemo. Then he’d paste a big bitter smile on his face. He was angry and depressed and his docs were having a hard time getting his side effects under control.

  One day his daughter and two-year-old granddaughter came in with him.There was a lot of jostling around and rearranging of chairs, so he didn’t make his usual dramatic announcement about getting his poison.

  His granddaughter looked like she
belonged in a Ralph Lauren ad. She had a nest of shiny dark curls surrounding her face, red cherubic lips, and stunning dark blue eyes. She was a gorgeous child, which made me immediately suspect she was a brat.

  “Papa up,” she said reaching her little arms toward him. I saw how he just melted when he lifted her up on the bed. She cuddled up next to him with her bottle and her blanket and he put his arm around her. His nurse started his chemo and left.

  “Papa good juice,” she said pointing to his IV line. Well, it’s true that Doxil is red and really does look like juice.

  He looked at her and laughed. “Yes, that’s Papa’s juice. Papa’s good juice.”

  I changed my mind; she was not a brat but a heavenly angel. “Lo, I bring you glad tidings of good juice!”

  After that day, I never again heard him call his chemo “poison.” And you can say what you want about how they finally found the right anti-nausea drugs for him or adjusted his chemo, but he never again complained of nausea.

  Then there’s Linda who asks me to come in and bless her bags of chemo before hooking up. The nurse hands her the bag, she kisses it, she holds it out to me, and I pray over it. Then she whispers to it, “Do your stuff!” and hands the chemo back to her nurse.

  I thought of my chemo as powerful memory juice that helped my body remember how to heal itself. They’ve shown that everybody gets abnormal cell growth every day and the body takes care of it. Maybe sometimes the body just forgets. So I went to sleep on chemo nights hearing my cells saying,“Oh, yeah—now I remember. Mm-hmm, that’s right. Of course! It’s all coming back to me. Oh, right!”

  One night I went to sleep and heard a cell saying, “Dude—like, now I remember!” Must have been all those weekends on the beach in Santa Cruz.

  The Housecreeper

  It was true that after my port placement Wes was doing everything around the house. He said to me, “We should get a housekeeper.”

  I hated the idea of a stranger coming in my house and touching my stuff. It bugged the hell out of me! I wanted to clean my own house. But I couldn’t.

  There was something else too.

  My maternal grandparents came to the United States from Spain via Hawaii. My grandfather worked in the pineapple and sugar cane fields. It was brutally hard work. When they moved to California, he worked as a school janitor and my grandmother worked in the cannery. They were hardworking people. Are you noticing how many times I use the word “work”?

  I was around eight years old when Nana said a lady at the cannery knew someone who knew someone who had a housekeeper. “Can you imagine?” Nana said, her voice dripping with disgust,

  “She can’t even clean her own house.”

  I gasped because Nana was so outraged, and all the other adults were shaking their heads and tsk, tsk, tsking. But I had watched the television show Hazel and thought it would be kind of fun to have a housekeeper. But now I could see how wrong that was.

  To me getting a housekeeper was an admission of how lazy I was, how I didn’t value my own house, how I thought I was too good for menial work, how I was a completely immoral and undisciplined person.

  When I explained all this,Wes just closed his eyes and pinched the bridge of his nose.

  I finally cracked when a friend pointed out how exhausted Wes looked. “Do it for him,” she said. So I agreed.

  We arranged to have the same housekeeper as my neighbor up the street. The housekeeper arrived at 6:30 a.m. with a friend, carrying buckets of cleaning products and her own vacuum cleaner. I was in the downstairs bathroom getting ready for work. But I could hear them talking and oh, my God—they were speaking Spanish.Well, why wouldn’t they? They were from Guatemala.

  But I knew my dead grandmother sent them to torment me. I felt sicker to my stomach than usual and slunk out of the house.

  I had my chemo that afternoon, and it was after my infusion that we came home to the Spotless Sparkle Palace.

  “Hey! This is great!” Wes said running his finger over a table. “They even cleaned the light bulbs and the lamp shades.Wow.”

  “Hmph,” I said.

  I looked at a plant that I usually kept on the side of the coffee table. It was now sitting smack in the middle of it. “Why is this here?” I asked sharply.

  “This bathroom is so clean I could eat in here!” Wes crowed. You must understand that this was coming from an infectious disease doctor.

  “I’m starting dinner,” I announced. “Just a little pasta with sauce.” I opened the oven. This morning it looked like a field of turds, covered with big brown lumps of burned on cake batter. Now it was gleaming.Where were the pans that I stored in there?

  I put on a pot of water to boil and took out the spaghetti. A neighbor had brought over this unbelievable marinara sauce, and I couldn’t wait to eat it.

  I opened the refrigerator, and I felt as if I walked into the wrong classroom. Yes, it was clean, but why was the mustard jar on the door? And—what’s this? The soymilk was cozied up against the barbecue sauce. Where was the marinara? I yanked open the crisper drawer which was now where the meat drawer should be. The marinara sauce was in there snuggling with two containers of cottage cheese. I should have known.

  Where was the Parmesan? I frantically searched the shelves. Hot smoked paprika next to Mom’s raspberry jam. Beer bottles randomly scattered around like hand grenades.Where’s the Parmesan?

  Don’t forget to breathe. In-breath or out-breath?

  Fennel and feta in the meat drawer. Salad dressing chatting up the yogurt! Soy sauce cavorting with the string cheese! “Where’s the Parmesan?” I said aloud, my voice catching.

  Wes came bounding up the stairs from the bedroom, “What, honey? Did you say something to me?”

  I was standing paralyzed in front of the open refrigerator, and then I started crying. “Where’s the Parmesan?” I wailed.

  “It’s right here.” He reached over my head and grabbed the hunk of cheese from the top shelf.

  “That’s where the pickles go,” I sniffled. He just wrapped his arms around me, and I cried all over his shirt. “Everything’s rearranged,” I whimpered. “My body is rearranged. My schedule is rearranged. My whole life is rearranged. And now our fridge is rearranged. I can’t find anything in there. I’m lost.” I cried while Wes cooked the spaghetti and heated the sauce and set the table and made the salad.

  Then I just sat there feeling all crappy and whiny. It was about wanting things to be the way they used to be. It was about resisting what is, and being in the aforementioned mode of clinging, grasping, and clutching. I wasn’t lost, just not going anywhere.

  “Honey, what would you like to drink?”

  “Water,” I answered.

  Then I got up, gave him a hug from behind, and poked my fingers under his shoulder blades looking for wings.

  Six

  TRIED IN VEIN

  From: Debra

  Date: July 26

  To: Everyone

  Subject: Tried in Vein

  Dear Fabulous Family and Friends,

  Is it possible that I cursed myself by saying in my last update that I hoped my next procedure went smoothly?

  At 6:40 a.m. on July 21, I went into the UW Medical Center to have my breast implant port removed. This is the little thingy sticking out of the side of my “breast” through which my plastic surgeon filled my implant. This is not to be confused with my port-a-catheter, which is in my chest and is used for infusions thus saving me from the odious IV needle in the arm or hand.

  The anesthesia resident came in to start my IV. “I have a port-a-cath!” I crowed. He shook his head and said he wanted to put it in my hand. “Okay,” I sighed. Well, he must have thought I said, “Poke around several times in the back of hand, make a big hematoma, and cause me to scream.

  The scream was involuntary—honest. Wes said I sounded just like our late dog Cokey (may she rest in peace) when he tried to cut her toenails. The resident started to come at me again and I shrieked, “I have a po
rt! Use the port!”

  Turns out he didn’t know how to access my port, nor did my nurse. I guess they both missed that class. They found a nurse who sort of knew how, but she didn’t have the right needle. She ended up using a 1.5-inch needle, which was w-a-a-a-a-y long. But in the end, I got that hideous breast port out, and I’m thrilled.

  They left my port-a-catheter accessed, and when I arrived for chemo that afternoon I looked as if I had an oil derrick sticking up out of my chest. My nurses were duly horrified.