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

by Debra Jarvis

  Almost nobody thinks it’s cancer.They think it’s an infection, the flu, a cyst, a pulled muscle, or like me, they didn’t have any symptoms. It’s right to think it’s something common, innocuous. If you thought every cough and ache was cancer, you’d go nuts. I think this is why there usually is such a shock.

  In medicine they say, “Common things happen commonly,” and “When you hear hoof beats, think horses, not zebras.” This is to keep doctors from going immediately to a wild or exotic diagnosis. But there are times the test shows an uncommon thing has happened. Robert showed up with a zebra, not a horse.

  In spite of all the tears, my sense of them was they were quite grounded, accepting, and not fighting the news. But I knew how hard it was to be in the No Clue Zone. There was a change of plans, but a change to what?

  “Robert,” I said,“I guess the question for you now is, what do you want the rest of your life to mean?”

  “Yeah, you’re not dead yet!” Steve quipped. We all starting laughing because we all knew the Monty Python line from The Life of Brian. The laughter came at just the right moment because we needed a break from the sorrow and the grief.And the crying—you have to stop at some point just because you get a headache, and you get really dehydrated. And Steve was right; Robert wasn’t going to die immediately.

  “That’s what I can’t believe,” Robert said. “I feel so well right now. It’s unbelievable that the cancer is back. I can hardly think about what I want the rest of my life to mean.”

  “This isn’t something you have to answer right now,” I said. “It’s something to think about. And you may want to think about with whom you want to spend your remaining time. Terminal illness is an even better excuse than cancer for dropping relationships.”

  Robert nodded.“That’s excellent news. I think I’ll let my PBS pledge go.” He stared out the window for a moment and then turned to Steve and said, “But how—what are we going to tell Mom and Dad? Mom will scream.”

  “His parents have been great,” Michael said. “But they had so much hope. He’s not kidding—his mother will start screaming. This will kill her. How are we going to tell her?”

  “Mothers are notoriously hard to control,” I said. “Especially their emotions. So you might think about getting into a mental/ emotional place where you are very calm and grounded. Then decide that however she reacts is okay with you. It’s been my experience the more relaxed you are, the calmer the other person can be.” I was thinking about how I yawned while Charlotte was in hysterics.

  “I do meditate,” Robert said. “I know how to get myself in a centered space.” He paused for moment. “But do you think it’s wrong to hope for a miracle?”

  “It’s never wrong to hope for a miracle,” I replied. “It’s not an either/or situation. So on one hand you can accept the medical reality, and on the other you can hope for a miracle. Do both.”

  I cracked open my water bottle, and on cue we all took drinks.

  “Like gazelles at the watering hole,” I said and then held the tissue box out for everyone. It felt as if I were celebrating Communion: tissues and water instead of bread and wine. I did feel in communion with them. How could I not after being with them in the most vulnerable of places—talking about death?

  We talked some more about Robert continuing to do the things that gave him joy and fed his soul. He had a huge network of friends and family, so I wasn’t worried that they would be alone in this. I gave them each my card and a hug and encouraged them to call me anytime.

  “I’ll keep you in my prayers,” I said.

  I opened the door and was just about to walk out when Robert asked, “What can you tell me about actually dying?”

  Argggh—the Doorknob Confession! This is anything that is said just as you have your hand on the doorknob to leave, which then makes it impossible to go. Examples of this include, “I killed my stepfather,” “God told me to tell you something,” “My sister takes my pain pills,” and everyone’s favorite, “I know what happened to Jimmy Hoffa.”

  I closed the door and sat back down. “Well, do you want to die at home?” I asked.

  Robert nodded. I could see the question shocked them because I asked it as casually as, “Do you like Chinese food?”

  “So if you want to die at home,” I said,“it’s a good idea to call hospice.Your case manager can give you the number and—”

  “But what about the actual dying?”

  “So you might go into a coma—”

  “I mean the spiritual part.”

  “Oh. You have a better clue than I do. You had the near death experience.”

  “Yes, the doorway, it was really more of an archway—a Romanesque archway. Are you familiar with that?”

  “Like the Bernard Maybeck First Church of Christ Scientist in Berkeley?”

  “My God! You know it? Yes, exactly, that’s Romanesque—although now that I think about it, the arch that I saw when I was near death was more like the Moissac Abbey at Tarn-et-Garonne in France.”

  I kicked myself. I knew nothing about architecture, but I couldn’t resist showing off the only architectural fact residing in my brain, and now we were totally off track.

  “How do you know the Maybeck church?” he asked.

  “I went to UC Berkeley and walked by it nearly every day.” I paused, thinking hard. “But I never knew the archway looked like the entrance to the afterlife.”That ought to get us back on track.

  Michael cleared his throat.“The Maybeck church is really considered to be eclectic Craftsman with Romanesque and Gothic motifs.”

  It was Steve who got us back on track. “I can’t believe we’re sitting here talking about architecture when Robert, when Robert is going to ...”

  “Die,” I finished for him. Then everybody started crying again.We were out of water now. Robert stood up and said, “Perhaps I’m going to die from this at some point, but right now I’m starved. Let’s go eat!” And like a congregation preparing to hear the benediction, we all stood.

  We had another round of hugs and good-byes. Then we all went to lunch.

  The conclusion of this visit may seem abrupt and unbelievable, and that is the operative word. The previous hour was so unreal to them that going for lunch was simply like going out after a movie. I knew our conversation felt like something they watched—like it never really happened at all.

  Cheerful or Fearful?

  My first clue that some people would have trouble with my attitude came to me before I was even diagnosed. I was talking to a fellow chaplain just after my biopsy. He seemed not to believe me when I said, “I’ve led a charmed life. Shit happens. There’s no reason why I shouldn’t have some shit in my life.”

  He did a double take and said something about me being angry, but I really wasn’t. I said, “Look, I’ve been a chaplain for twenty years. I’ve contemplated my own death every day. I’m not saying that I won’t be upset if they tell me I have cancer, but I’m not angry.”

  Then, after my diagnosis, a colleague from work called and said, “Of course you’re freaking out.”

  “Not really,” I said. I thought she was projecting. I didn’t say that because in the same way that proclaiming you’re not insane makes everyone think you really are insane, strongly proclaiming that you are okay makes everyone think you’re in denial.

  Robert did not fear dying because he felt that compared to his experience of a transplant, death would be easy.

  What many people didn’t realize was that cancer was not the worst thing that ever happened to me—getting fired many years ago was worse. I know. You’re shocked. How could losing a job be worse than cancer?

  The Theory of Relativity

  I had been working for seven years as a spiritual counselor for a Seattle hospice program. It was a job I loved. My colleagues and I had a mutual love and respect for one another, and I looked forward to going to work every day. I loved introducing myself to people as a “hospice spiritual counselor.” (Just say the word �
�hospice” and you are immediately thought of as “special” because people are so freaked out about death.)

  All you need to know is that they fired me because of a book I wrote and that I felt betrayed.

  On the afternoon it happened, I was in such a state of shock, I saw nothing odd about keeping my appointment with Nello, my hairdresser.

  I settled myself into Nello’s chair and he fluffed up my hair the way hairdressers do. “So I bring you a glass of wine I know you love. But first, how are you, Debra?”

  “Just got fired, Nello.” I looked at my watch. “About twenty minutes ago.” He looked horrified and his hands froze on my head so that my hair looked big and scary like a head full of snakes.

  “I go get you wine.” He brought me an enormous glass of chardonnay. I must have been reeking of need because he massaged my scalp and my neck and my shoulders and my arms and hands. Then he gave me the most precise haircut I’ve ever had. It felt as if he were cutting each hair individually. I was in that chair for two hours.

  Little did I know that a voice mail about my termination had already been sent out to the hospice team, and they were calling my house and leaving messages like, “I just heard the news, and I can’t believe they terminated you!”

  “Debra, getting fired over a book is noble. Call me.”

  “I’m shocked. I’m so shocked. Call me.”

  Wes came home to all those messages and since it was after eight o’clock by that time, he wondered where I was. When I finally drove up in the driveway, he came running out.

  “Where have you been?”

  “Getting my hair cut.”

  “There are all these messages about you being fired, and I was worried you went to a bar.”

  “A bar? Oh, sweetheart, you know I’d go to a bakery before a bar any day.”

  In the days that followed I kept reliving the termination scene. I sobbed every day for hours. “It’s all my doing. I’ve ruined my life!” I said to Wes. I was inconsolable.

  Getting fired is nothing like getting laid off or having your company go under. There is something particularly shameful and humiliating about it. It also brought up the whole identity question: If I couldn’t continue to do my job, then who was I? Do I have any worth if I can’t do my job? For many months afterward when people asked what I did, I said,“I’m a hospice spiritual counselor.” I clung to that job title like a life raft. But it was a raft with a slow leak, and I knew that I had to eventually let go of it.

  I was not a spiritual counselor anymore, but I was still a writer! And then the unthinkable happened. My publisher pulled out. So I gave birth to a book into which I poured my heart and soul—and it was stillborn.This put me into a downward spiral of such raw grief and anguish that I thought it would kill me.

  I was not a hospice spiritual counselor. I was not a writer. I was not.

  Since I couldn’t face being, I got into doing. I madly did projects around the house. I painted the deck and put in a new garden. I spray painted the lawn furniture. I brushed our dog daily until she was nearly bald. I volunteered at our local public television station. Physically I was healthy, but emotionally and spiritually I was ready for the ICU. Unless you are healthy in all three areas, you aren’t really healthy.

  When you lose your job, people don’t continue to call and ask how you’re doing. They don’t send cards and flowers. They don’t bring over food, although I was so paralyzed with grief that I couldn’t even go out grocery shopping. I was sure the checker would take one look at me and know that I had lost my job.

  It wasn’t the kind of thing where I could stand up in church and say, “I’d like prayers for myself because I was terminated from my job.” I couldn’t even enter the sanctuary, but stood in the narthex weeping and shaking. I was ordained in this church and felt that I had let down the entire congregation. The few people who knew were loving and supportive, but I was too scared and ashamed to ask for prayer.

  The day after I was fired, an acquaintance called and asked,“So have you got your résumé out there yet?”

  That was like asking a widow the day after her husband’s funeral if she had any dates lined up. The acquaintance didn’t want to be with me in my pain, and he wanted to fix it. To him it was just a job. To me it was my identity and a huge part of my life.

  Of course, I was furious with Mr. Martha Miyagi because I had felt called by the Spirit to write that book. And now look! I was mad as hell and confused.What was I supposed to do now? I didn’t know that the real question was, who was I supposed to be?

  After a while, I knew I had to process this whole experience so I started talking about it—incessantly. Whenever I met someone new, or someone who didn’t yet know, I went into the whole story. Misunderstood and betrayed! Deceit and duplicity!

  After a while, I noticed that Wes and others who had heard it would move away when I started my story. That is when I learned the difference between venting feelings and feeding feelings.There came a certain point when I realized that every time I told the story, I was actually nursing my anger, hurt, and resentment. So I just shut up.

  I began taking a two-hour yoga class.When the teacher asked us to go around and say why we came to the class, I simply said,“I came here to heal.”

  I also started meditating every day. This was unbearably painful at first because I mentally flogged myself for having been so brainless about the book. My first mantra was something like, “Goddamn stupid idiot.” After a while I stopped that and instead alternated between, “Lord Jesus Christ, have mercy on me,” and the Buddhist, “Om Mani Padme Hum.”

  The Buddhist mantra literally means, “Hail! The jewel in the lotus.” That just got me thinking about jewelry or how I should be out in my garden. So I chose to focus on the interpretation that said the mantra helps you achieve perfection in the practice of generosity, ethics, tolerance and patience, perseverance, concentration, and wisdom. And who couldn’t use a little more of all that?

  Eventually my mind settled down and I would get brief glimpses of peace; a hint of serenity here and there, an occasional faint feeling of self-acceptance.

  I did not go through this experience with anything resembling grace and charm. I definitely lost my inner joy for a while. It was two years before I was able to introduce myself simply as “Debra Jarvis,” without some feeble tagline about being a writer or a hospice spiritual counselor. It was four years before I knew I was valuable and loved just because I existed—just because I was.

  I mention all this so you understand what I had under my belt before my cancer diagnosis.

  My cancer diagnosis was not a moral or ethical dilemma. Cancer is a disease and disease happens. Nobody betrayed me. Family and friends were there for me—even if some of them thought I was in denial.

  Bad Luck, Sorrow, and Grief

  It is possible to be betrayed and get cancer at the same time. This is what happened to Rick.

  I first met him during a fire drill at the clinic. When the drill begins, everyone on the floor has to leave the building and go stand outside in the parking lot. The only exception is if you are doing direct patient care. So the alarm went off. It was cold. It was rainy. I’m a weenie. I saw the floor monitor coming down the hall, and I ducked into a room. Sitting hunched over in the bed was a man about thirty. He had white blonde hair and light blue eyes.

  “Hi, mind if I hide out in your room?”

  He started laughing. “Sure, be my guest.” I closed the curtains to his room. “So that makes me an accomplice,” he whispered.

  “Yes, it does,” I whispered back. “I’m Debra, one of the chaplains.”

  “I’m Rick. If anyone comes to get you, you can pretend to be absolving me.”

  “Okay, but first I have to hear all your sins.”

  He looked at his watch and gave me a big grin.

  He was adorable. And he was Catholic, I was sure of it. Protestants don’t talk about their pastors absolving them—unless he was Episcopalian.

 
; “I do accept indulgences,” I said, intentionally using the Catholic term, “indulgences.”

  “I got some old lottery tickets. Will that get me out of purgatory?”

  “Ah-ha! You are Catholic.”

  “Was.”

  “So where are you now with all that?”

  “I would say that I’m spiritual, not religious. I believe that there is a Higher Power. I pray, and that’s all I want to say.”

  “Spiritual not religious.” I hear this every day. I think people say this for many different reasons. They’ve had a bad experience with their childhood church, but they still believe in God. Or they are agnostic and want to keep their options open. Or they want to get you off their backs. I knew if I talked with Rick long enough, all that would unfold.