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

by Debra Jarvis

  Okay, dear friends, that’s all for now. Thanks again for all your love and support. Also, don’t hesitate to call. We have an answering machine, so if I can’t talk to you, I won’t answer, and you can leave a message. Or you can e-mail me: Debra@debrajarvis.com.

  But don’t feel that you have to keep in touch.

  Just know that you’ll be out of the will if you don’t.

  Love and Hugs,

  Debra

  P.S. I’ve thought of the title of my next book: This Sucks! What to Say, How To Be, and What To Do When Your Friend Has Cancer. This is based on my recent personal experience of well-meaning friends saying unbelievably stupid and hurtful things. The only thing that has kept me from homicide is: they weren’t close enough to shoot, and (the real reason) I know that their intentions were good.

  Still Speaking

  It was a few days after my diagnosis, and I had just arrived at work, walking down the hall, slightly preoccupied with the fact that I, myself, had cancer, when I heard this noise that immediately made me think of a documentary I saw about hyenas. Hyenas aren’t sitting around laughing and telling jokes. They make that maniacal sound when they are being submissive. But I could tell that whoever was in room 31, a room with a door, was not being submissive. She was being abusive.

  “You don’t understand! I have cancer! You couldn’t possibly understand!” If we get a heads-up from a case manager that a patient may be “high maintenance,” we put them in a room with a door, if available, until things calm down.

  She was shrieking and crying, and a man was sitting in an upholstered chair next to her bed. As I walked by and looked through the window, I could see that he kept trying to hold her hand, and she would shake him off. She was a first dose patient, so of course, I’d stop by and say hi. Her name was Charlotte.

  Besides the verbal conversation with a patient, there is another level of communication that goes on, and for lack of a better word, I’ll call it the energetic level. I think part of my job is to balance the energy during the encounter. This means that if someone is in high drama, maybe near hysterics, I’ll go into the room so laid-back, you’d think I’d been lying on the beach sipping margaritas all day.

  Speaking of beverages, I’ll bring in a cup of tea, because there is something really grounding about that. Clearly a visit to room 31 called for strong Earl Grey with milk. Some patients call for green chai, others for cocoa spice. Still others Jack Daniels, but that’s not allowed.

  The tea is not only for me. I’ve found that watching me drink tea helps patients calm down a little. I mean it can’t be that bad if the chaplain is sipping tea.

  I drink my tea in a red commuter cup, which let’s face it, is an adult sippy cup. On one side of my cup it says, “United Church of Christ.” On the other side it has a big black comma with the words, “God is still speaking.” The comma refers to the Gracie Allen quote, “Never place a period where God has placed a comma.” Maybe Gracie was referring to our church forefather John Robinson.

  When the Pilgrims were leaving Europe with Mayflower Moving to invent Thanksgiving in Massachusetts, John Robinson sent them off with this sound bite: “God has yet more light and truth to break forth out of his holy Word.”

  This means to me that there is no once-and-for-all interpretation of scripture. I know as absolute truth Mr. Martha Miyagi never stops talking. It’s just a matter of whether or not I’m able to hear. Maybe next year they’ll come up with a cup that says, “Keep listening.”

  Anyway, I knocked on the door of room 31, set down my tea, and washed my hands. “Hi, Charlotte? I’m Debra, the general oncology chaplain—just dropped by to say hi.”

  “You’re the chaplain?” she asked before breaking into the hyena sobbing again. She was in her sixties, and her hair was dyed a little too dark so that it gave her a harsh look. I could see her foundation coming off on her tissue.

  The man in the chair stood up, and we shook hands. “Hi, I’m her husband, Ed.”

  I sat down on a rolling stool and scooted up to her bed. I let her howl for a little bit and then, this is how laid-back I got: I yawned. I mean, it wasn’t a fake yawn, I really yawned, and my eyes started to tear up, like when you first get up in the morning. I dispensed with the usual concierge questions.Wiping my eyes and sniffing, I asked, “So what’s happening?” If I got any more laid-back I would have been rolling a joint.

  “I. Have. Cancer.”

  For a moment I thought about yawning again and saying, “Yeah, me too.” But instead I reached over and squeezed her arm and said, “Then you are in the right place.”

  She wasn’t crying anymore. “Colon. Cancer,” she said.

  “So what are we giving you today?” I asked this question because it gives me a clue to how involved a patient is in his or her medical care. If she put her hands over her face and said, “Oh, God, I don’t know,” then I would know that she was probably too fearful to find out.

  But she said,“I’m getting 5-FU and oxaliplatin for six months and then surgery.”

  Okay, so she was informed. I sipped my tea. “So tell me how all this came about.”

  Her story was that her cancer was found early on a routine colonoscopy. This was good news.

  “If you think getting a tube stuck up your ass is easy, let me tell you ...”

  “You were sedated,” Ed said. “You’re weren’t even awake.”

  She ignored him. “Well, the real fun is the bowel prep. They make you drink this stuff, it’s ghastly, and then you have diarrhea for hours.”

  I could tell that she was going down a well-trod verbal path. She had probably told this story a hundred times. Her husband excused himself. While she went on with her story, always just this side of hysterical, I sipped my tea and waited.

  I was listening to her, and there was an energetic undercurrent of thoughts humming through me: no drama necessary. It’s only cancer. It’s only death. What’s death? Just the closing of the circle. No big deal.

  The Dalai Lama is often seen laughing and smiling. Lighten up, he seems to be saying. This too shall pass. The United Church of Christ has ads that read, “If you think getting up on Sunday mornings is hard, try rising from the dead.” Lighten up.

  What does the dramatic emotion get you? Attention from others, at a time when what you really need is attention from yourself. Pay attention to yourself, and you won’t need it so much from everyone else. This was all going on at that energetic level I was talking about.

  When she came back around to retelling the bowel prep story I interrupted.

  “Charlotte, your prognosis is good. So what do you make of all this?”

  “What do I make of it? Well, I guess I’m not surprised.”

  “Why are you not surprised?”

  This is when she went from hyena to bunny. This is what I was waiting for.

  “Well, my dad died of colon cancer when I was in high school. Then Mom was diagnosed with breast cancer a few years after that. She died just before I graduated from college.”

  “How sad that she didn’t get to see you graduate.”

  She just nodded because she was crying very quietly into her tissue. “I knew I would get cancer. How could I not?” I handed her another tissue.

  Her prognosis was good, but like my mom, all she knew was that cancer equals death. She probably didn’t even hear her oncologist tell her that her cancer was curable.

  “You have no idea what it’s like to have parents with cancer, and then get cancer yourself.”

  “Yes.”

  I meant, “Yes, I do,” but she didn’t know that, and it didn’t really matter. I stayed a little longer, and she told me about growing up in the Episcopal Church, and how she found it cold.

  “Ah, yes, the ‘frozen chosen.’”

  That made her laugh, and before I left she squeezed my hand and said, “Thank you for coming.”

  “You’re welcome. Can I bring you anything—a cup of tea?”

  “That would be perfect
.”

  Food for the Journey

  I kept telling myself that this whole cancer thing was no big deal. So it seemed to me that the logical thing to do was to prepare for my surgery by cooking and cleaning. I made a big pot of chicken-vegetable soup. Little did I know at the time I was chopping vegetables that these would be the last things I chopped for months.

  I’ve always believed that cooking food is both mystical and magical. When I cook for parties and dinners, I think of who is going to be at our table. I visualize each person and say a little prayer for them as I’m slicing or sautéing. So I prayed for myself and Wes.

  It’s tempting to say, “Especially for Wes,” which would make me sound all unselfish and saintly, but it isn’t true. I think it’s a big mistake not to pray for yourself. You know, it’s the whole put-your-oxygen-on-first-and-then-you-can-assist-others deal.

  Since I’ve given you my take on Jesus, I should give you my take on prayer. I don’t think God is Santa Claus. You know, you hand God a list and hope the list is checked twice and you’ll get what you asked for based on whether you’ve been naughty or nice.

  If you ask me to pray for you, I don’t ask the Divine to do this or that. Instead, I visualize you surrounded by Light. I visualize you so at peace and feeling the spiritual presence of Mr. Martha Miyagi that whatever happens you will remain at peace.

  One of the best e-mails I received after my diagnosis was from a Quaker friend who wrote, “I am fervently holding you in the Light.” Nothing about curing, nothing about making events go a certain way. And whenever I felt exhausted or sick, I remembered that I was being held, “in the Light.” Fervently. I felt comforted, loved, protected.

  So as I chopped carrots and broccoli, onions and garlic, I visualized myself and Wes surrounded by the Light. I saw us eating this good soup and feeling at peace. As I cut up the chicken I whispered, “I hope you had a good chicken life—laid a few eggs, hatched some chicks, maybe had some grandchicks. Sorry about the decapitation. I hope you enjoy being in my soup. Thank you, thank you, thank you.”

  To be honest, I don’t always commune with my food in quite this way, but the days leading up to my surgery had a Last Supper quality to them that made everything seem Significant and Important. This was because we knew nothing would ever be the same.

  Things would be different after my mastectomy, but it didn’t mean things would be bad. It would be up to me to figure out how to accept things as different and not worse.

  Calling All Patients

  Even though I told my colleagues that it was perfectly okay, and they had my express permission to share my diagnosis with my patients, I knew it would be hard for them. We’ve all been HIPAA-cized to death and are terrified of accidentally sharing medical information. HIPAA, or the Health Insurance Portability and Accountability Act, or the “Keep Your Big Mouth Shut Act,” is basically a good thing. It keeps medical information super private and confidential, and we all learned not to talk about patients in front of other patients, in the elevator, in the hallways, or in the restroom. (You never know who is the next stall.) If we receive a written message with a patient’s name on it, when we’re done with it we have to either throw it in a special recycling box or eat it.

  So I knew that asking the nurses to tell my patients I was home recovering from a mastectomy was like asking them to drink poison. I realized I needed to call my patients myself. I had been seeing some of these people for months, so for me to just suddenly drop off the face of the earth with no explanation seemed downright rude.

  I made a list and a latte and started dialing. Don’t think I wasn’t a little nervous about this. For one thing, I wasn’t making the call from the clinic. I was sitting in my kitchen in my sweat-shirt and jeans, and I didn’t feel very professional. My plan was to simply say I’d be back at work in six weeks, and another chaplain would be visiting.

  In chaplaincy training we are taught to keep the focus of the conversation on the patient. We learn to listen reflectively, which is basically feeding back to someone what we hear him or her saying. That is why chaplains can be such good party guests—we are trained to be fabulous listeners, which makes other people think we are great conversationalists.

  Of course, sometimes the reverse is true. A chaplain will go to a party and think,“I’m not at work. Now I can talk about me, me, me!” and then all we do is drone on about ourselves. Forgive us. Simply tell us about some minor tragedy in your life and we’ll snap out of it.We can’t help it. At one party I stopped in the middle of telling a story because I saw a woman’s eyes filling with tears.

  “What’s going on?” I asked softly. She just shook her head and waved me off. I put my hand on her arm. “No, really. You can tell me.”

  She pointed to a huge tabby who was sitting on the couch licking itself. “I’m allergic to that goddamn cat.”

  So my first instinct when making these phone calls was to tell them my news and then get the conversation back to how they were doing. But this was not to be. I felt as if I called the mastectomy hotline.

  “Oh, my God! Did they give you stool softeners? Take extra with a big glass of water and eat an apple a day. Fruit will save your ass and I mean that literally.”

  “Start your arm stretching as soon as you can. I’ll send you my exercise sheet. And soups—soups are quite good for you, keep you hydrated. Be conscientious about taking senna with every pain pill.”

  “You’re gonna be sleeping on your back, okay? So honey, here’s what you need to do: get one of those knee wedges so you don’t get back pain. Are they giving you stool softeners?”

  It’s known that people tend to regress when they have serious illnesses, and to be sure, when you are going through surgery and chemo you may as well be a newborn, because it’s all about eating and pooping. Especially pooping because pain medication can constipate the hell out of you. So I received lots of advice about that.

  At first I was uncomfortable with this, but I saw that allowing people to help me was empowering for them. When you are a patient and receiving so much care from everyone, it’s easy to feel as if you have no value. This is especially true if you are used to being effective, efficient, and competent. Not only were our phone conversations a chance for them to give me excellent advice, it also deepened our relationship. I realized once again that we connect through our vulnerabilities, not our strengths. That is why when you encounter severe turbulence on a plane flight, you may feel closer to your seatmate than to your own grandmother.

  The Heart of the Matter

  Even though I had been seeing him for months, Haruki Ito was a bit of a mystery to me. He never failed to be polite, as was his wife, Michiko. He was diagnosed with lymphoma, and for a long time just cruised along with it. But suddenly everything went out of control with his white blood cells, and that’s how I met him, when he came in for chemotherapy.

  He was a well-known painter who had taught for many years in a well-known art school. Both he and his wife were born in Japan, and even though they had lived for many years in the United States, they had the ingrained habit of bowing ever so slightly whenever I greeted them. It was as if there was an accent to their body language.

  As polite as they always were, they were also very private about their feelings and their stories. I knew they had no children, and I could see they were devoted to one another. It would be easy to describe them as “cold” and “distant” except I felt nothing but warmth from them.

  They both were always neat and well groomed. Michiko often wore jeans with high heel boots. Her hair was perfectly cut into a shiny black bob. Haruki wore carefully ironed white shirts and pressed jeans.

  I gave them lots of space to tell their stories, but I ended up learning more about them on Google than I did by talking with them. The notes in his chart were vague when it came to “social history.” It seemed Haruki’s doctor didn’t have any better luck than I did. If any couple acted as though cancer was no big deal, it was the Itos.

  An
y attempts to discuss his worsening disease or their spiritual beliefs were skillfully and politely parried. So we talked about art and music and sushi. I scored big with them when I told them I had my first sashimi at age thirteen when my sixth grade teacher took us to the Ginza Café in downtown San Jose, California. I kept visiting because they always said before I left,“Thank you for coming to speak with us. Please come back.” So I did.

  But it was clear the usual chemo and then the experimental chemo wasn’t working. Haruki grew thin and weak until at last he was hospitalized. I went to see him in the hospital a few days before my surgery. When I arrived, I was shocked to find Haruki was in a coma and on a ventilator. Michiko sat quietly in a chair right next to his bed. She was wearing her signature jeans, boots, and a pink turtleneck. I sat down next to her and put my arm around her. I had only shaken her hand before, but this felt like the right thing to do.