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

by Debra Jarvis

  We didn’t have a talking stick. I had intended to gather shells on Maui, but shockingly there were none to be found. So we passed out Magic Markers. I thought that was pretty cool because it had “magic” in the name. So every group went through the questions in the final session of “The Existential Expedition.”1. What do you believe happens when you die?

  2. Is death the worst thing that can happen? Why or why not?

  3. What to you is the worst kind of death? Why?

  4. If you had to die right now, how would you like to die?

  I gave them forty-five minutes but stretched that to an hour. The room was buzzing. At one hour and fifteen minutes, I begged them to reconvene to talk about this experience. They loved it and were surprised that they loved it.

  One man said, “My group wants to talk some more, so we are all going out to dinner tonight!”

  “Ask your waiter how he wants to die,” I said,“then be sure to leave him a big tip.”

  Again, it was people connecting in moments of vulnerability—talking about how they wanted to die. I think that is why cocktail parties or parties in general are often so unsatisfying. Everyone is busy being attractive and happy and funny. It’s not impossible to really connect with someone at a party, but it’s rare.

  As I was gathering my notes, two nursing students came up to me.

  “We want to know about burnout,” one of them said. “How do we keep from getting burned out?”

  “You won’t be burned out if you understand there is a gift in this for you. It’s a two-way street.”

  She misunderstood me and said, “Okay, so I go in and don’t expect anything back.”

  “No, no! I’m saying the opposite! You go to work and expect to find a gift in every encounter. It could be from a patient, a family member or a co-worker. It’s not their responsibility to give it; it’s your responsibility to find it.You must be alert.”

  The nurses I have seen who get burned out are the ones who are the martyrs—“Oh, I give so much of myself to my job.”

  I used to have a supervisor in hospice, who when she heard stuff like that would say, “Well, it don’t martyr to me.”

  The other nursing student said, “I wanted to ask you about dreams. I took care of a lady and then I had a nightmare about her.”

  “Was she dead?” I asked.

  “Not when I had the dream. She died about two weeks ago.”

  She was asking this because I talked about Cindy coming to me in my dream. We were quiet for a moment and then she said, “She reminded me of my mom, who died of cancer.”

  Ah, yes. “Just be aware of your emotions,” I said. “You don’t have to say anything to your patient, but if you are aware that this person is bringing up strong emotions for you, you can sort it out later and won’t have to process it in your dreams.”

  I was a big fan of “sorting things out,” and now I was going to get two weeks alone to do it. Wes and I drove out to Lanikai where we found a rustic Hawaiian bungalow set right on the water. The house looked east and every morning I awoke to the sun rising over the Mokulua Islands. There were two fish ponds and a bird feeder for me to manage. And there was Puna.

  Puna was a pure white Samoyed who required a morning walk, food once a day, and drops in her eyes. You may think a ferociously furry dog like that would be miserable in the tropics. But Puna radiated peace, love, and tranquility.

  Wes left early the next morning for Japan, and Puna and I settled into our routine. This consisted of me waking up to the sunrise and saying, “Holy-Jesus-God-and-All-the-Saints!” I said this every morning because it was so outrageously beautiful and I love sunrise. I made coffee, prepared a papaya with a little lime juice, and cooked an over-easy egg. Then I sat eating and watching the ocean. That’s all I did. I didn’t read. I didn’t write. I just ate, sipped my coffee, and watched. I was relaxed but alert. What would the Unseen One show me today?

  After breakfast I took Puna out for her walk on the beach.We walked until there wasn’t any more beach.Walking with Puna was how I imagined it would be like walking with a movie star. Everybody recognized her and came up and said hi, and petted her. Even if they didn’t know her by name, she was so attractive, people were compelled to say something.

  She is like a celebrity among dogs, too. As we walked down the beach, dogs barked at her and strained at their leashes trying to get close to her. But she paid no attention to them. At first I thought,“Oh, my God, she is the Buddha—no dog fazes her.” But then we were walking and there was one dog, a young beagle, with whom she was very interested in playing. So I stopped and they romped around for a while. This happened every day. If the beagle wasn’t there, she chose some other dog.

  I thought, “Hmm, she is very selective. Not every barking dog gets her attention. What does that mean for me?” And with absolute clarity I realized I didn’t have to say yes to every project, but like Puna, choose only the ones that really captivate me.

  I had to fly all the way to Hawaii to get that? Well, yes. I can’t tell you why I didn’t get it before, but I got it in a very deep way then. Part of it was having cancer—it really makes you see you haven’t a moment to waste. The other part was that I was away and alone. There was no one needing me to be a certain way. I wasn’t even asking anything of myself except to be alert and awake.

  The weather cooperated in my quest to simply be. It rained. And rained. It was record-breaking rain, although it was usually dry first thing in the morning when Puna and I went for our walk. It wasn’t just rain, it was torrential, non-stop rain with thunder and lightning. Buildings flooded, sewage pipes burst, the island of Oahu was a disaster area. Kailua beach had sewage in the water. This meant I had no guilt about not kayaking, swimming, snorkeling, or hiking. Roads were washed away. I couldn’t go anywhere. Pure bliss.

  The day I left the sun came out. I took my last walk with Puna. Then I gathered all my clothes, which were raggedy summer clothes, and dropped them off at a clothing bank. I wanted to leave my old self behind. And by that I mean the self that played with every dog who walked by.

  Ten

  RIB, RIB, HOORAY!

  From: Debra

  Date: December 8

  To: Everyone

  Subject: Rib, Rib, Hooray!

  Dear Family, Friends, and Colleagues,

  Today is my one-year anniversary of finishing chemo. Over the past year I’ve gotten used to my role as “the chaplain who had cancer treatment.” So in addition to prayers, absolution, baptisms, Communion (real wine!), reflective listening, and sharing Divine wisdom, I now dole out advice on mastectomy camisoles (pockets for your drains!) and the importance of having a lightweight cotton knit warm-up suit that can double as pajamas and as day wear.

  In my last update I said if tamoxifen didn’t work out for me, I’d do my best to turn it into a cleaning product. I’m happy to say “Tamoxiclean” is now in Phase II trials. Something was causing a burning sensation in my mouth twenty-four/seven and no one in my cancer posse could figure it out. Was it the Zometa I received for my osteoporosis? The tamoxifen?

  I went off the tamoxifen for five wonderful months. The hot flashes are now better, but my mouth is still an inferno. Because I have osteoporosis, I’m now taking raloxifene (or “relax the fiend” as we call it). It not only will prevent a recurrence, it will also build back my bones.

  I’ll admit it’s been difficult at times to accept my body, which has been changed by surgery and chemopause. I think as we age we slowly and gradually revise our self-image. A few more gray hairs, a growing paunch, no big deal. But some events insist on a rapid revision—pregnancy is one of them, cancer is another.

  I can’t tell you how shocked I was to realize I could no longer do a decent cartwheel or fit into my high school blue jeans. It seems my fat cells, which for years have been localized in my thighs, have metastasized to the rest of my body. And where I used to pop out of bed like bread from a hyperactive toaster, I now ooze and groan my way to an upright pos
ition.

  Nevertheless, in late August I felt that at last I was getting my health back. Some colleagues and I were talking about running the Seattle Half Marathon. I was lifting weights again. I took a week-long intensive yoga class. It was then that I went to Mazama in Eastern Washington to officiate at the wedding of some friends.

  There I took my maiden voyage on a mountain bike. We were at the end of a two-hour ride during which I was smiling through clenched teeth and yelling, “Yeah, I love it, too! Yeah, feels so free!” I remember looking down at the big white marbles on my handlebars and realizing they were my knuckles.

  We were two miles away from our starting point, going downhill on a rocky path. I was thinking, “I’m going too fast and feel out of control.” The next thing I know I am writhing on the ground with the bike on top of me. My first thought: “Oh, %&$*!” All that chemo and surgery, and now I’m going to die in the dirt like a dog. (Even in my state of unbearable pain, I was pleased with that alliteration.)

  Wes, realizing I was no longer behind him, came tearing back. He asked me all sorts of questions, but I couldn’t speak. I could only move my fingers and toes to show him I did not have a spinal cord injury. He then noticed my arm, which was scraped and bloody and filled with dirt. Ever the infectious disease doc, he announced, “We must clean out that wound!” He proceeded to squirt his water bottle all over me.

  Through clenched teeth I managed to croak out, “Least . . . of my . . . problems.” He wanted me to get up because I was lying in the dirt in the broiling hot sun, but I simply could not get up. So he stood over me to provide shade. He is six foot three and was wearing a bike helmet and big, bulgy goggles. I looked up and felt as if I were going to be devoured by a giant insect—I welcomed it.

  That was, in every way, the lowest point of this experience. I knew I had done something really bad to myself, and there was no going back.

  Fast forward to the emergency room whose motto is, “We teach you how to wait.” I was doing Lamaze breathing to deal with my pain. Finally, they took me back, took X-rays, and gave me an ultrasound. The nurse said, “We just had an acute M.I. come in,” which is nationwide code for, “The attending physician is having a meal.” Time became geologic, and just as we were entering the Jurassic period, the attending physician showed up.

  He was very sweet, took my hand, and said, “First of all, I’m so sorry you had to come here tonight.” I’m thinking, “Pain-pain-pain-pain-pain-pain-pain.” Then he said, “Thank you for wearing your helmet.” I’m still thinking, “Pain-pain-pain-pain-pain-pain-pain.” Finally he said, “You have two broken ribs, but no internal injuries.” He handed me a bottle of pain meds and said, “I don’t want you to get pneumonia, so take these pills and ten deep breaths an hour.”

  Why didn’t he just hand me a pair of steak knives and say, “Stick these in your eyes ten times an hour?” Pain-pain-pain-pain-pain-pain-pain.

  So I missed two weeks of work, and I can honestly say this is the most pain I’ve ever experienced in my life—made my mastectomy look like a manicure. The two weeks I was home I spent eating, taking narcotics, and sleeping. I didn’t catch up on projects, clean the house, or do anything interesting. Well—there was that first day I spent vomiting up narcotics and then vomiting from pain. That was pretty interesting.

  I couldn’t believe I was in so much pain for so long. Two broken ribs, and I was on narcotics for five weeks! Or was I becoming a drug addict? Nah—the constipation isn’t worth it. Worst of all, the broken ribs never even showed up on the X-ray. Maybe they weren’t really broken.

  I saw my oncologist two months after the crash and was still wincing when I took a deep breath. The thing is, once you have cancer, what was formerly nothing could now be something.

  “Broke two ribs because you fell off a bike?” she asked suspiciously. I tried to explain that I didn’t simply fall, I crash-landed onto a ledge of rock. She still ordered a bone scan. This is exactly the kind of oncologist that I like, very thorough, leaving nothing to chance. I must admit it did cause my stomach to drop into my shoes when I saw her write, “Rule out mets” on the order. I knew she didn’t mean the New York baseball team.

  When the bone scan was over the tech got very excited. “Hey! I thought you said you had two broken ribs. I see six ribs and two fractures on each rib!” He sounded as if he had just won the grand prize at an Easter egg hunt. Sure enough, on the scan my rib cage looked like it was strung with Christmas lights.

  Very festive.

  I did not consider this bad news. I felt vindicated. I wasn’t such a baby after all!

  Since I’ve been off chemo for a year, this will be my last update. I’m sure you are all breathing sighs of relief because you were afraid I’d start sending hernia, hemorrhoid, and Pap smear reports.

  So thanks for caring and reading and responding to these updates. I’d like to thank my director and the Academy, but the orchestra is playing me off the stage, and my false eyelashes are coming loose from all the tears. And speaking of false, the boning in this strapless gown is poking my implant.

  Love and Hugs,

  Debra

  Beginnings and Endings

  I completed my first year of being off chemo, and there were all kinds of beginnings and endings happening around me. I had been following Lisa for four years. She had completed the last possible treatment for her cancer. We were now giving her palliative care: packed red blood cells, platelets, hydration. We referred to this as the “red wine, white wine, water” regimen. She already had hospice come in and do an initial assessment with her. She cut off her long hair before it all fell out and had a wig made that looked perfectly natural—until now. She had lost so much weight it perched on her head like a little blond nest.

  If it had been any other patient in this situation, I would never have mentioned I was coming up on my chemo anniversary. But I had known Lisa for years and knew she would celebrate with me.

  I knocked and slid open the door to her room. I was surprised to see she was fast asleep and even more surprised to see she was not wearing her wig. A soft knitted cap covered her head. I was just backing out her room when she opened one of her eyes, lifted her hand, and gave me a little smile.

  “Come in,” she said softly. “I have a question for you.”

  I gelled my hands. That was our policy at the clinic: “Gel in, gel out.” It was like rubbing clean-smelling slime on your hands. Or blowing your nose without a tissue. Or shaking hands with a slug. You get the picture.

  Lisa and I always joked about this because everyone who stands there rubbing his or her hands together looks like some mad scientist eager to inflict some horrendous pain.The unfortunate thing about this is we both thought that at times, it was true.

  So I rubbed my hands together and said in my best Transylvanian accent, “Yes, my darling. What is your question before I stick the electrodes on your eyeballs?”

  “The hospice nurses come in every couple of days. But at the end, don’t you think they should be there all time, because what if I fall out of bed?”

  I kept rubbing my hands together way after the gel had evaporated. I grabbed a rolling stool from the corner of the room and sat down.Then I lowered the seat and cleared my throat. I bought myself about fifteen seconds doing all of this.

  “You won’t fall out of bed at the end,” I said.

  “How do you know?”

  “You won’t have enough energy. You barely have enough energy to go to the bathroom now, right?”

  “Right.”

  “Well, at the end, most people don’t have a lot of energy and they usually go into a coma. If you’re in a coma, you’re not jumping around and you won’t fall out of bed.”

  “Okay.”

  I rolled up close to the bed and took her hand.“If you’re really afraid of that, you can have someone stay in the room with you.” She didn’t say anything for a long time, just lay there gripping my hand. I saw she was getting the “white wine” today.

&nb
sp; Finally she said, “I told my daughter that Mommy is probably going to die from the cancer.”

  “What did she say?”

  “She said, ‘I don’t want you to die, Mommy. What if I have a problem and need to ask you a question?’ I told her, ‘When you have a question, all you have to do is get very, very quiet and very, very still and ask your question. Then being as still and as quiet as you can, listen very carefully, and Mommy and God will give you an answer. And as you get older, when you are very quiet and very still, you will hear your own voice.’”