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

by Debra Jarvis

  You may think everyone with cancer is a “cancer victim,” but that is not true. Kari was a “person with cancer.” She was doing her best to live her life and treat her disease. She wasn’t able to do everything she wanted to do, because she was so often fatigued and nauseous, but she was never a victim.

  We even discussed that term. “Victim makes you sound like some kind of suffering prey,” she said.

  “Yes,” I said, “like ‘the gazelle was a victim of the lion.’ But I don’t feel like prey—just horribly inconvenienced.”

  “Yes,” she said. “Cancer is terribly annoying.”

  Even though her disease progressed, her doctor always had some new experimental chemo up his sleeve, so she wasn’t discouraged.

  She had been dealing with breast cancer for three years. She was only thirty-four and had been diagnosed with a Stage IV cancer. She attended a conservative evangelical church.

  “But I don’t really agree with them,” she confessed. “I don’t believe you’ll go to Hell if you don’t love Jesus. There’s lots of other stuff I don’t believe in.”

  “Then why do you keep going?”

  She looked sheepish.“Because the women there are all so nice and help so much with the kids.” She had three little boys.

  I nodded silently. Childcare is a big deal when your husband works full time and you are coming in for chemo every week. Then there are the scans, the doctor visits, the extra visits when you need IV hydration.

  “The women have become my friends, but I’m afraid to say what I really think when they talk about God.”

  “So what do you do?”

  “I go to the bathroom.”

  She wasn’t afraid to talk about death, though.

  “I do think there is some kind of reunion with loved ones,” she said. “I’m looking forward to seeing my dad.” Her father died of cancer when she was a teenager. But her mother and her sisters never talked about his death after the funeral. “It was like we had to pretend everything was okay. Even when he was really sick and it was clear he was going die, my mother wouldn’t discuss it.”

  “But didn’t you and your sisters talk about it?”

  “Only in whispers.”

  One day she came in with her husband. Unbeknownst to me she had decided the three of us would talk about her death.

  “So, Bill, Debra’s here and I thought we should talk about me dying.”

  I was surprised, and Bill looked terrified.

  “I didn’t know, Bill. Honest,” I said.

  Kari continued. “Well, Bill, I really think you should remarry. Those boys need a mom and you’ve got to get out and start dating—well, not right away. You know, after maybe a year.”

  Bill was beet red and his eyes were filled with tears. He sat there silently, swallowing. Kari kept talking in her light and funny way about what to do with her clothes and what to tell the boys, but instead of relaxing Bill, it seemed to paralyze him.

  “Bill, breathe,” I said. He looked up suddenly as if he forgot I was even in the room.

  Kari pressed on. “Promise me you’ll speak at my funeral, Debra. You’ll be the only one there who can talk about what I really believe.”

  “I promise.”

  “But maybe I should go somewhere and not be at home to die. I don’t know if the boys should see me wasting away. Debra, what do you think?”

  I knew a child’s imagination, well, anyone’s imagination for that matter, can be worse than the reality. I had been with kids whose parent was taken to the hospital or a hospice facility to die. If they didn’t visit frequently, the kids had no idea what was happening. I asked one little boy to draw me a picture of what he thought happened to his mom and he drew this thing that looked like a meat grinder with his mom’s hands sticking out the top.

  I wanted Kari and Bill to understand this, so I told them about Addie Brown, a woman I met with when I worked in hospice.

  I had visited Addie in her home for a couple of months. I usually came in the afternoon, and her three grandchildren were always there. After school they came to her house and stayed with her until their mother picked them up after work. This had been going on for years since Addie’s daughter was a single mom, and Addie adored her grandkids.

  She had lung cancer that had been discovered at a late stage. At the time, it wasn’t even treatable with chemotherapy. When it became clear she was too weak to make cookies, or sing and play piano, they put her bed in the living room so she could be “part of the wildness!” as she would say. This way she could still read stories or watch TV with her grandkids. I thought this was great, but her daughter told me this was not a popular decision.

  “Her next-door neighbor thinks I’m taking advantage of Mom. She said the children shouldn’t see their grandmother like this.” She rolled her eyes. “What does ‘like this’ mean? Mom’s getting weaker and thinner, but I think she’s even more beautiful.”

  I had to agree. As Addie’s body wasted away, she seemed more spirited than ever.“I am so blessed,” she said.“I have these wonderful wild things running around and taking care of me.”

  Her eldest grandchild, Tess, who was eleven, combed and braided Addie’s hair and painted her fingernails sparkly blue. “Looks like I’m already dead,” Addie said smiling and surveying her manicure.

  “You’re right,” I said. “Except for the sparkle.”

  Shauna at eight, was shy and liked to cuddle with Addie, running her plastic ponies up and down the blankets, neighing and snorting, whispering some secret narrative.

  Glennie at five was a small tornado. He laid car tracks all over the house, played Nerf baseball in the living room, and pounded on the old upright piano.

  “Everyday he climbs up on my bed,” Addie told me,“and asks me to tell him a story. And I always do.”

  Addie was in a coma for about twenty-four hours before she died. The hospice nurse and I arrived soon after. As usual, her grandkids were there, this time they were quietly playing together.

  I sat down on the carpet with them. Tess looked up at me. “I brought decals for her nails,” she said tearfully. She held out the decals, a set of ten little bumblebees.

  “She would have loved them, honey.”

  Shauna had her horses lying down in a circle.“What’s happening with your horses, Shauna?”

  “Oh,” she said stroking one that had a real mane and tail,“this is what horses do when they’re sad.”

  And then suddenly, as if he couldn’t stay still a moment longer, Glennie jumped up.

  As he had done every day for months, he climbed up on Addie’s bed. “Grandma?” he said softly. Nobody moved or said a word—what if it really was a mistake to let him witness his grandmother’s death? Then he climbed right on top Addie’s body, straddled her chest and leaned forward. He lifted up her eyelid and looked directly into her eye. “Grandma? Are you in there?”

  He paused for a moment and then turned to us with a small grin on his face and said, “She’s not in there.”

  We all smiled back and nodded. And then with the certainty of a five-year-old, he climbed down and said, “Okay.” He was perfectly satisfied.

  We all breathed a sigh of relief as I had secretly wondered if he was going to be working this out on his shrink’s couch for the next forty years. But no, he was not afraid or traumatized.

  After I told them about Addie, I could see Kari had completely changed her mind about dying away from home. I turned to Bill and said, “Bill, what do you think?”

  “I don’t want her shut away,” he answered.“But we don’t have to think about this anytime soon.”

  We had to think about it way sooner than anyone liked. Two months later it was clear her disease was progressing, and there was no treatment left for her. And suddenly her willingness to discuss her own death vanished. All she could talk about was the next experimental drug and trying to hang on.

  I have seen this before. It’s as if once death becomes more of an undeniable reality and
less of an abstract concept, the person can no longer speak of it. For some people it is fear and for others I think it is utter disbelief. Kari could not believe she was going to be separated from her children. For her it seemed discussing her death at this point was like agreeing to abandon her boys.

  I went to see her in the hospital just before she went home to die. She looked up at me as I walked in. “I hope it doesn’t come to this for you.”

  Up until that moment I had pushed it out of my mind that Kari and I had the same disease. I knew the circumstances were totally different—hers was a later stage, more aggressive, and major lymph node involvement. But with her lying there, her eyes yellow, Bill sitting hunched over the side of her bed, I had to keep reminding myself he was not Wes, and she was not me. My heart was pounding and my stomach curled up into a tight knot. Not Wes. Not me.

  “Kari, it’s important that you know—” Bill could hardly choke out the words. “You are everything to me. I love you so much.” Her eyes were closed and she squeezed his hand. Not Wes! Not me! Then after a moment she whispered something to him.

  “Yes,” he said. “Debra, she wants to be sure you will speak, you know—at her funeral.”

  I was struggling to breath, to swallow, to not break down sobbing. I didn’t want her to die. Fuck cancer.

  “You promised.” She said this in such a loud, strong voice that it startled me. I realized we all had been speaking in whispers.

  I managed to swallow down the feather pillow that was stuck in my throat. “Yes, I remember.”

  “Tell the truth.”

  “I will.”

  Then I sat there and held her hand and watched her sleep. My whole body was tense, I swear, every single muscle because I was trying so hard not to cry. Mr. Martha Miyagi? God? Spirit, Universe, Ground of Our Being? Where are you?

  In, over, around, and through you.

  Then there was a huge Divine sigh. I felt it—soothing, warm, and clean around us like a comforter that has been airing in the sun. Bill felt it, too, because he looked up at me with a slight smile. Swaddled in spirit like newborns. I relaxed in it for a few minutes. Then I kissed her goodbye and left.

  Some consider this the hardest part of my job. I consider it the best, the richest, the most sacred. I would never choose not loving my patients to avoid the pain of losing them. That is the risk in loving anybody. But we are never alone with the pain of the loss.

  She died two weeks later. Her pastor called me and asked me to choose a Bible verse that reflected my experience with Kari. Picking the scripture was easy because Kari and I had talked about John 15:12. This is where Jesus says to his disciples,“And my command is this, love one another as I have loved you.”

  I went to the service with her infusion nurse and her case manager. It was on a Saturday, two days post-chemo, which was a bad day for me. I felt tired, nauseous, and headachy. But worst of all, I was wearing an old pair of knee-high nylons (which Wes calls “cheaters”) and they were sliding down my calves. I had on a pretty hot-looking, mid-calf, black Liz Claiborne dress, but I was sure these damn cheaters would pool around my ankles like saggy elephant skin.

  I walked up to the podium and it took every molecule of self-control not to bend down and pull them up. I took a moment and looked out at the congregation. I could see from their faces they were all kind people. Sitting in the front row with Kari’s three little boys was Bill. Okay, so I couldn’t look there. I began.

  “Whenever patients identify themselves as Christian, I ask them about their faith community. Kari told me about this community and how much she appreciated the love and support she received from all of you. She was so grateful for your phone calls, meals, childcare, rides, and especially your prayers. And I think that truly you loved her as Christ commanded: ‘Love one another as I have loved you.’

  “Kari was fully engaged in her faith, always questioning her beliefs, wondering about interpretations, and curious about historical context.”

  I didn’t tell them our speculations about the teenage Jesus.

  “One of the things I loved about her was she didn’t take her faith for granted. She struggled to understand and integrate her beliefs. And she was brave enough to question, reflect on, and even reject some of them.”

  I didn’t say which ones she rejected but I could feel a certain tenseness creep through some of the crowd. Except for her family, that is. Her sisters were looking up at me smiling, and Bill slightly nodded his head.

  Kari and I had discussed many verses and agreed if a person could keep the commandment, “Love one another as I have loved you,” all the rest would fall into place.

  “What exactly does it mean?” she had asked.

  “Well, yeah, there’s the rub.” I had answered. “We spend our entire lives working out what it means to love one another as Christ loved us. A hell of a command.”

  No doubt about it, it is a command. It’s not as if Jesus was making a suggestion like some waiter helping you with your dinner decision, “May I suggest loving one another as I have loved you.” No, he said, “this is my command.”

  I told the crowd how much Kari loved her family and how hard she had tried to stay alive. Then I told them about the last conversation I had with her.

  “After she went into a home hospice program, about a week before she died, I figured it was okay to talk about death again. I said, ‘Kari, so now you’re pretty clear that you are going to die from this.’ And she said, ‘I’m doing everything I can, not to. What’s the number of your naturopath?’

  “If we hadn’t talked so openly about death the year before,” I said, “I would have been worried. But I knew she was saying this, not because she was afraid of death, but because she loved life so much. She wanted to continue working out the commandment, ‘Love one another as I have loved you.’

  “Kari died peacefully, surrounded by love. I believe the love of her family and friends helped her let go gently and lightly.”

  Then I decided to throw in a little Buddhist prayer. “So my prayer today is that in loving one another, we would all be healed, we would all be blessed, and we would all have peace. Amen.”

  I went back to my seat and pulled up my cheaters. After the service Bill and Kari’s sisters embraced me and thanked me.

  I kept my promise.

  Eight

  INFUSED WITH THANKS

  From: Debra

  Date: December 21

  To: Everyone

  Subject: Infused with Thanks

  Dear Fabulous Friends and Family,

  At 7 a.m. on December 8, I quietly, and without ritual, took my last Cytoxan pill. There are a lot of complaints one could make about chemo, but the fact is, it kills cancer cells, and I was grateful for the scientists (and patients) who made it possible. I meditated on that for a few minutes, and then it came to me: if Cytoxan can kill cancer cells, surely it can get rid of that scum in the bottom of my toilet.

  I had eight 50-milligram pills left. They were even blue, the traditional color of toilet bowel cleaners. I knew my toilet was eligible for this experiment, so after obtaining informed consent, I carefully dumped the pills in the bowl, and they magically settled on the worse spots. Targeted therapy. When

  I came back half an hour later, there was a little blue pile of dissolved Cytoxan. Clearly I needed to disperse the drug. I took an old toothbrush (I think it was an old one) and stirred it up. Beautiful aqua blue!

  I planned to call my discovery “Cytoiletan.” No scrubbing necessary! I could only hope there were no side effects—we’ve all had the experience of a vomiting toilet, and it’s not pretty. I came back in another half hour and flushed. Alas. In spite of my efforts, the aggressive scum continued to grow. My treatment failed the toilet. Procter and Gamble would not be beating down my door. I had to go back to the traditional therapy: Lysol and elbow grease.

  In spite of my disappointment that morning, I continued on to the clinic where I spent the day seeing patients. Lots of them. This worked
out well for my infusion staff friends who secretly decorated my room for my last treatment. I hadn’t a clue.

  I walked into what has been variously described as a “Parisian apartment,” a “diva salon,” or a “high-class bordello.” I was immediately presented with a hot pink feather boa and invited to lie on the bed, which was covered with over-sized pillows and a chenille bedspread. There was sparkling cider on ice served in champagne glasses. Windham Hill music was playing, and Christmas lights surrounded a handmade window-sized card. Tablecloths turned the hazardous waste container into an end table. Doilies covered the sharps container. It was no time for a surprise accreditation visit! There were even battery-operated candles! Coffee was served with the lemon tart and white chocolate cake.