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

by Debra Jarvis

  I can hardly remember getting my chemo, and when everyone sang the end-of-chemo song, Wes and I both cried. There were all sorts of meaningful things I wanted to say, but my mind was as fuzzy as the chenille bedspread. So let me say them here:

  Thank you all for taking care of me. It doesn’t matter if you never accessed my port, took a vital sign, brought me a warm blanket, or signed the card. Thanks to anyone who asked me how I was doing, gave me a hug, said hello, sent me an e-mail, a kind thought or a prayer, or took care of me. This is powerful medicine.

  I often hear patients say they feel cared for at the SCCA, and I think that is because we are good at simply saying hello, at acknowledging the existence of another person. This is important outside of the clinic, but it really matters inside the clinic because as a patient, it’s easy to feel you are a faceless part of the big, sick, cancer crowd. But I think we treat our patients like special individuals, each of us with our own set of symptoms, side effects, and situations. That in itself is healing. So thanks to all of you.

  There has been a suggestion from some staff that I keep my port-a-catheter in for demonstration purposes. Just last week we had a patient who had what we call in medical jargon, “really crappy veins.” I successfully talked her into getting a port after yanking down my sweater, pointing to my port and saying, “See, it just sits there like a sweet, little gumdrop. And your nurse puts a needle right in the middle of it. You don’t have to have your arm mercilessly jabbed, your veins wickedly pricked or a tourniquet torturing your arm.” I tried to present this in a neutral, factual way.

  In spite of the usefulness of my port, I will get it out at some point soon. But I may use it for an infusion of Zometa because it turns out genetics trump thirty years of running and calcium supplements. I’ve inherited significant osteoporosis. (See? I’m not as dense as you thought.)

  And finally, if you have any housekeeping problems—well, if this tamoxifen doesn’t work out you can try “tamoxiclean.” I’m sure it will work.

  Sincere Thanks, Love, and Hugs,

  Debra

  Uncharted Territory

  When I first met Mike Glazer he was charming to the point of smarmy. He always smiled and raised his eyebrows in the way that says, “I want to have to sex with you.”

  For example, I’d ask, “Would you like a bottle of water?”

  He’d say, “Sure!” and then smile and raise his eyebrows up and down. Ick. He had a perpetual golden-brown tan and wore Hawaiian shirts and flip-flops. Yes, in Seattle. In the winter. He was fifty-six years old and had metastatic rectal cancer.

  On my second visit to him, he told two filthy jokes to his infusion nurse and me. I can forgive a dirty joke, but what I can’t forgive is an unfunny dirty joke. We wondered if he had a personality change due to steroids, or perhaps a small stroke? Or was he just being a jerk?

  I didn’t visit him for a few weeks after that. When I saw him again, what he most wanted to talk about was how he wanted a girlfriend and wanted to get laid. He told me his ex-wife thought it was justice he had rectal cancer, because he was such an asshole. It was his affair that broke up their marriage.

  “But a man like me has needs,” he said. I skillfully steered the conversation away from sex. I felt as if he were testing me, to see if I was put off by all his sexual references. I was mostly bored.

  Once we got off sex, he would talk about money: how everything was costing him too much, how he wasn’t paid enough at work, how his remarried ex-wife had lots of money. It was tempting to point out that he could save a few bucks by staying off the tanning bed. After a while I wanted to scream at him, “You’ve got incurable cancer and all you can think about is money?”

  So why did I keep visiting him? Because beneath all this Trader Vic, sex god bravado I sensed there was a very frightened man. I also knew his disease was progressing and at some point, facing his death would be undeniable.

  In the months that followed I found out he was raised Catholic but rejected Catholicism. He married his wife because he got her pregnant. He divorced when his kids were little, and his wife had custody of them.

  “I paid child support,” he said. “That was a money sucker.”

  He started coming in for chemo on days I didn’t work, so I didn’t see him for months. When I finally saw him again, I was almost done with chemo.There was no way I was going to mention that. I’d be crazy to even think the word “breast” around him.

  He was in Bay 47. I looked in there and then checked the board again. I did not recognize him. He had lost a tremendous amount of weight. Not only that, I was shocked to see how naturally pale he was. He was sitting in his bed, just staring down at his feet. I knocked on the wall before opening the curtain.

  “Mike, hi, remember me?”

  “Sure, where have you been?”

  “Not here the days you were. How are you doing?”

  “Not that good.” This was the first time he wasn’t smiling or raising his eyebrows.

  “What’s happening?”

  “Well, my son is living with me. He takes really good care of me. I’m kinda surprised because I know he’s still pissed off at me for leaving his mother. Maybe he’s right. Maybe I should have stuck around.”

  He went on for an hour, talking about his regrets, his sons, his band, and surprisingly, his gratitude for the medical staff. When I asked him about his beliefs around death, all he could say was he wasn’t ready to give up. Before I left, for the first time ever, I gave him a hug, and he cried on my shoulder for a few moments. I went right back to my desk to write my chart note.

  Chart Note: Spiritual Care

  I met with patient in the infusion suite. We have not seen one another for months, so he caught me up on his life. He just bought a house in a Seattle suburb and is looking forward to living there. The stairs in his Downtown condo have become too much for him. He is also grateful to have his eldest son living with him, as he has been an excellent caregiver. There are some unresolved issues between them that can make things stressful for Mike. I suggested this could be an opportunity for them to discuss these things and resolve them.

  Mike became quite tearful when talking about the support of his friends. He belongs to an informal band and plays guitar. He feels the band members have really been there for him. He also expressed gratitude for his doctor and for the care he has received at the clinic.

  He became tearful when talking about not wanting to “give up.” It is difficult for him to discuss his beliefs around death, but we did talk about reframing “giving up” as “letting go.”

  Mike was raised Catholic but “gave it all up once I moved out of the house.” Recently he has made some jokes about sin and Hell and “knowing where I’m going to go.” My sense is although he says he has rejected Catholicism, there are still some beliefs he holds. At this point he is unable to articulate his spiritual beliefs.

  We discussed how he is “having a hard time looking in the mirror.” Mike has lost over fifty pounds and looks quite different from when I saw him last. Although thin, I let him know I found him to be very “Clint Eastwood-y” in his gauntness. I assured him this was not a bad look for him, although perhaps he should try to gain a bit more weight—or start wearing a cowboy hat.

  I will continue to offer spiritual and emotional support.

  Years ago there was a chaplain in the department who was known for her brief chart notes. She would often write something like, “I visited the patient in his room. Then I left.” She felt it was nobody’s business what went on between the chaplain and a patient.

  I had a slightly different view. I wrote chart notes for many reasons. Chaplains have a pretty low profile, and I think having a chart note is a good way to let the staff know we exist. Reading our notes gives them some idea of what we do. Of course, I don’t usually put in details about recipe swapping or a patient’s feeling about the Mariners’ pitching. I try to make my notes relevant and at least interesting.

  I never knew who woul
d be reading my note. We are always warned, “Don’t write anything you wouldn’t want read aloud in a court of law.” That was probably the wrong thing to tell me, because I imagined some well-dressed lawyer reading my note aloud and the judge saying, “What an insightful, provocative note. I must retire to my chambers to think it about it.”

  I also wrote notes on what I thought was important for the health care team to know. In Mike’s case I thought they should know we had a conversation about dying, that death was on his radar screen. Perhaps this would make it easier for his physician to talk about chemo failing and when to stop. The note would also give her a clue that it was difficult for him to talk about death, but at least the subject had been broached.

  Maybe she would pick up on the fact there was some unfinished business between him and his son, and that might influence her decision around stopping treatment. Noting he was tearful and he was grateful for his friends was a message he wasn’t the macho jerk that he seemed to be. I also wanted her to know in spite of the fact he was usually arrogant and demanding, he was grateful for his doctor’s care. And anyone who knew Mike Glazer and read my remark about him looking “Clint Eastwood-y” would understand immediately how important that was to him.

  Another reason I wrote notes was purely for myself because I couldn’t remember a damn thing. Once I read my note, it all came back to me. I think the reason I can’t remember all my patients and our conversations is it isn’t healthy to keep all those people in my head. This happens to the nurses, too. We all agree there are some patients, who are unforgettable, but 90 percent of them go out of our brains and it’s probably better that way.

  The last reason I chart is more subversive: I didn’t think it was a bad idea for the reader to ponder the very thing a patient and I had been pondering, that is, what happens when you die? What has my life meant? What is it like for me to look in the mirror these days? So a chart note could secretly be like a little homily or meditation. Subliminal spiritual direction.

  Most patients don’t even realize both chaplains and social workers chart at all. One patient was very upset with her social worker and said she felt betrayed, as if she told a girlfriend a secret who then told everyone. For a while that caused many of us to write the vaguest and most useless notes. It’s true patients have the right to read their charts, so it’s a fine line we tread.

  As a rule, I don’t chart gory details. For example, if a patient and I talk about her being abused as a child, I write, “discussed painful childhood issues.”

  Sometimes I walk out of a patient’s room and wonder, what just happened? Charting is a good way of sorting that out. It is also a way of cleansing myself, of letting one patient go, so I can be present for the next one.

  “I will continue to follow and offer spiritual and emotional support.” I almost always write that at the end of every note unless I’m not planning on seeing the patient again. I never write “give” emotional and spiritual support, but “offer” it. You can’t give support unless it’s accepted, so all you can promise to do is offer it.

  Last Pill and Testament

  Even on days I wasn’t getting chemo, I was offered, and gratefully accepted lots of support from the staff. I received holy oil from Jerusalem, rosary beads from the Vatican, and impromptu shoulder rubs. On chemo days the nurses often gave Wes and me leftover box lunches to take home for dinner. This was such a godsend. On those dark winter nights after chemo, shopping for groceries felt like going out into the forest to kill a stag for dinner.

  Early on people had asked, “Who will be a chaplain to the chaplain?” The answer turned out to be: everybody. I didn’t have deep, soul-baring conversations with everyone, but it seemed everyone was willing. Not a day went by when someone didn’t ask me, “How are you feeling?” and then left room, left space for my answer. And I could answer big or I could answer small. But there was always space for the big answer. Just as importantly, nobody pressed me with, “Really—how are you?” when I wanted to give a small answer.

  I was so very happy to be done with chemo. It meant the end to constant low-grade nausea, the return of my taste buds and my energy, and the freedom to be away for more than six days. I was also grateful my colleagues no longer had to deal with caring for one of their own. As much as I tried to let go of this, it weighed heavily upon me. I knew as time went on, it became easier for the staff to treat me, but it was never easy.

  But it’s tricky business deciding how to proceed after finishing chemo. It’s tempting to think,“Now I can go back to my life.” But as they say, you can never go back, you simply redefine what is normal—the “new normal.”

  For all cancer survivors, there is always a chance of recurrence, even if it’s only a teeny, tiny, quark-sized chance. Knowing this makes some people afraid to celebrate. They feel as if they are tempting fate.

  Joyce was a perfect example of this. She was from Alaska and had been diagnosed with an early stage breast cancer and received the same chemotherapy I did.

  “We threw a big party,” she said. “I thought we were done with it and I could go back to my life.” A year later she had a recurrence, and a year after that metastases to her bones and her brain. “I thought I had beat cancer. But now I wish I hadn’t celebrated. I wish I had been more respectful of it.”

  I didn’t want to treat cancer like a god, an entity to whom I had to show respect. I didn’t think of cancer as Arnold Schwarzenegger in The Terminator saying, “I’ll be back.” I felt more like Dorothy in The Wizard of Oz. I had escaped the wicked witch of the West and her flying monkeys. I was back in Kansas, and I wanted to celebrate and say thanks. If it recurs, it recurs. Why miss a party now for something that may or may not happen?

  There is another tricky part of finishing chemo, and because I worked at the clinic, it was one I didn’t have to contend with: leaving my caregivers and the safety of the medical community.

  Yes, people are thrilled to be out of the weekly chemo rut, but after seeing the infusion staff weekly for six months or more, they form a close bond with them that makes it hard to leave. Many patients cry at their last chemotherapy, tears of happiness at finishing, but also tears of sadness.

  One patient told me it was like cutting an umbilical cord. “There is always someone to call about any little symptom or problem. Now I feel like I’m out there on my own, and what if I get a headache or a fever? I guess I do what a regular person would do—take aspirin.” As much as you want your normal life back, it’s kind of cool to have a benevolent “mom” taking your temperature, your pulse, and fussing about your health every week.

  Often patients want to stay connected to their care providers, but some staff members have very clear boundaries and don’t keep in touch with patients once they are outside the system. Others are more relaxed about it.

  I don’t have boundaries exactly—more of a selectively permeable membrane, which allows some people to stay in, and not others. There are patients I never see again, those with whom I keep in e-mail contact, others who have been to my home for dinner and stayed overnight, and one who has become a mentor and close friend to me.

  Rock Music

  When a patient has his or her last treatment, we gather round, sing the end-of-chemo song, blow bubbles, and bestow a plastic crown and lei. Then we take their photo. But sometimes we also do the rock ritual.

  We do this for patients with whom we feel very close or who live in another state, or who we feel need to take something tangible with them to remind them of our support.We did it for Jenny because she was only in her twenties and lived on one of the islands off the coast. Jenny’s mother died of cancer when she was a child.

  Her nurses and I gathered around her bed.“Jenny,” I said,“each of us has different strengths that have helped us get through tough times. So each of us will put our strength in this rock for you to call on any time you need it.”

  Her chemo nurse started. “Jenny, I put into this rock my ability to see the big picture.This has ke
pt me from getting down about the little things and lets me know there is more to life than just me and my problems.”

  “I put patience into this rock,” her case manager said.“I know you will need a pretty big dose of patience as your health and your hair slowly return.”

  I went last. “Jenny, I put into this rock my sense of humor. It has saved me from taking myself too seriously.” Of course I wanted to say something really funny to prove I had a sense of humor, but nothing came. At this point tears were streaming down Jennifer’s face.We always finish the ritual with me playing my cedar flute.

  I am not some big virtuoso on this flute. I used to play my recorder for my hospice patients, but this turned out to be a failure for several reasons. One was I would get too worked up about playing the wrong notes or the wrong rhythm. The other was a soprano recorder can be a little shrill, especially in the hands of an amateur, and not at all soothing to patients.