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

by Debra Jarvis

  So I called Wes. He is a research scientist/physician and is always in the lab or in the clinic or in a meeting. He was actually at his desk—another minor miracle. I said, “Okay, so I have cancer. Here’s what it said.” Then I read him the report. He later told me he was shocked and afraid, and that he was standing but couldn’t feel the bottoms of his feet. He also wanted to do something immediately. I guess he was a little upset.

  He said, “Page Our Friend The Surgeon.” So I did, and just as I was hanging up the phone, there was a knock at the door, and it was Our Friend The Surgeon!

  He walked in and said, “Just a minute, I’ve got a page.”

  I said,“Don’t worry. It’s me!” Then he saw I was online. I said, “Yeah, so I read it.What does this mean?”

  He looked at me and said, “Well, it’s invasive cancer, but it’s curable. I’ve got you scheduled for an MRI on Wednesday.” I mean the guy was on top of it! That was so great. Then Wes called, and I put him on the phone with Our Friend.

  While they talked I remembered the little boy at the concert asking me, “Are you strong?”

  I guess I would find out.

  Putting on the Ritz

  I always tried to visit all the patients in the clinic who were receiving their first dose of chemotherapy. That first visit is overwhelming. You don’t know where to park, where the elevators and restrooms are, how to register, or where the best seat in the waiting room is. You don’t know your nurse, what chemo is going to feel like, or if you’ll get any food. For this reason, when I make that first visit, I act sort of like a concierge at an upscale hotel.

  I want to assure the patients we will do our best to care for them. I want them to see me, the chaplain, as a friend and servant, not some powerful authority to be feared. I mean “servant” in the sense of “one who serves,” not in the sense of “slave.”

  People get wigged out over that word “serve,” but I think it would be a different world if everyone thought about their job as a way to serve the world instead of a way to make money.

  What would it be like if when your alarm went off you thought, “I’ve got to get up and go in to serve?” Or at a party, instead of asking, “So what do you do?” ask, “So how do you serve?” This doesn’t mean you have to be in the Peace Corps, or adopt orphans, or run a homeless shelter. I think you can serve the world by being a joyful presence as you hand over that latte or make copies for your boss.

  So on my first visit as concierge/chaplain I might say, “Hi, I’m Debra, the general oncology chaplain. I like to peek in and say hi to everybody on their first visit. Are you finding everything you need? How’s the room service? Have they brought you any cookies?” This usually breaks the ice. They like that I’m not asking them anything medical or anything religious.

  Then I usually ask, “So what brings you to our fine establishment today? I know it’s not the lunches.” I say this because it’s funny, but the truth is I love the lunches. So then they tell me their stories.

  The first few minutes are always a test. They want to know if I’m really interested, do I really care? Or am I going to sit there and nod and say,“Mm-hmm,” like the stereotype of a Freudian shrink?

  Jeff Spalding started with, “I was born in Spokane and there were eight kids in my family.” I settled in, because often, if someone starts out with his birthplace, I know I’m there for a while. Jeff was about thirty-five, had a buzz cut, and looked like he spent his days not driving Peterbilt trucks, but lifting them over his head. It turned out that Jeff started with his birthplace because it was relevant to his current experience.

  “So all my family still lives in Spokane, and I don’t really have any family out here. One day I was lifting weights and I just passed out. And I thought I was dehydrated, so I drank some water and started lifting again and passed out again. So I went to my doctor. He ran some tests.Turned out I have esophageal cancer!”

  “What?! That totally sucks.”

  “Yeah, I was floored.”

  My reaction usually matches their reaction even if I already know their diagnosis.This is because while they are telling me the story, I am right there with them. So I was right there with Jeff in the gym thinking he was dehydrated. And I was right there with him when his doctor said, “Esophageal cancer.”

  I reached over and squeezed his enormous bicep.“Yup,” I said. “I can see that you are not exaggerating about this weight lifting thing.” He gave me a big grin, and then I knew I had passed the test.

  On that very first visit with Jeff, it was clear that his most important source of support was his family. I could tell by the way he said, “All my family still lives in Spokane.” He had been diagnosed only a few weeks ago, and I knew he was still in that stage where you think you are watching a movie about cancer and you happen to be the star.

  “I just don’t know how I got this,” he said. “I was taking supplements and stuff to build my muscles. Could it be that? I don’t even have any cancer in my family. Maybe it was all those electrolyte drinks—and they didn’t even taste that good!”

  On the first visit I never press anyone to have a conversation about his or her spirituality. I just wait. I can do this because I have the luxury of seeing patients for the length of their chemo, which is often weekly or bi-monthly for at least a few months.There are only a couple of other clinics in the United States that have chaplains for outpatients. I think it’s the best chaplain gig going because there is time to develop a relationship.

  It’s not like working in a hospital where the stay can be brief, or the emergency room, where all you get is one shot. It’s the difference between a drive-through burger joint and a four-star restaurant. I’m not just handing you your food, I’m here to serve you and to have a relationship with you. You are a repeat customer. There is no rush. May I suggest the chicken noodle soup?

  I mean this literally as well as metaphorically. Just before I leave the room I always ask, “Is there anything I can get for you? Would you like a bottle of water or some cookies?” Most people are surprised and delighted by this. The nurses and nursing assistants all do the same thing, and it helps a patient feel like a welcomed guest. Yeah, yeah, we all know you’re in a cancer center, but why not make the experience for everyone as pleasant as possible? Looking at it in a totally selfish light, it just feels better to be thoughtful and kind rather than selfish and uncaring.

  How Did I Cause It?

  Although I am a graduate of the Shit Happens School of Cause and Effect, when I got my cancer diagnosis, I did exactly what Jeff did when he got his: I tried to figure out how I got it. I regularly exercise, am in a happy marriage, and eat well. But here are the things that immediately came into my mind:

  Too many protein bars! That summer when low-carb was all the rage I ate chocolate/peanut butter protein bars all day long. I also ate those low-carb fake candy bars that contain artificial sweeteners such as acesulfame potassium and neotame. Frightening to pronounce let alone ingest.

  Not enough meditation! I had a good meditation practice going for a while, but, well, things got busy—um, yeah. Maybe meditation would have calmed down any abnormal rapidly dividing cells. Or perhaps the Divine was trying to tell me something, but I wasn’t there to listen.

  I should tell you that I use these words interchangeably: God, the Divine, the Universe, the Presence, Mr. Martha Miyagi. I’ll explain that last one. I don’t have a visual for “God.” She/He/It has always been an inner voice for me—a combination of Mr. Miyagi from The Karate Kid, and Martha Stewart—before she became a felon. I figured that Mr. Martha Miyagi said, “Well, cancer ought to slow her down.That will give her time to meditate.” I got very zealous about meditating right then because I was afraid that if I didn’t the Universe would cut off my legs.

  Didn’t take a real lunch! I had a bad habit of working through lunch.This was usually because a lot of patients came in between 11 a.m. and 2 p.m. If I took lunch then I’d miss them.Then in the late afternoon, I would eat lu
nch at my desk while charting.This is not considered good self-care. But I thought,“What if the patients who don’t see me this week die?” It gradually dawned on me that if they did die, it would probably be because of their cancer, not because they didn’t see me.

  Fired from my job! Seven years before my diagnosis I had been fired for a book I wrote, and I was devastated—much weeping and gnashing of teeth! The stress of that must be what caused it.

  So those are all the reasons my mind provided. But I know that I can never trust my mind. So I meditated and went deep within and asked my heart, “What caused my cancer?”

  My heart said, “Shit happens.”

  Moderate Dread

  A few weeks before my diagnosis I read an interview with a psychologist who said, “Familiarity moderates dread.” I think that is exactly right. If you told me I had multiple sclerosis I’d probably be so freaked out, I’d be chewing off my own arm. But cancer was something I knew. It would be surgery, chemo, radiation, hormonal therapy, or some combination of them.

  Or maybe it was my twenty-plus years of working with the terminally ill and cancer patients that led me to think it was just a matter of time before I was diagnosed. Before my biopsy report came back a nurse friend asked me,“What is your intuition about this?”

  I said, “There is something in there. It’s not really bad, but it’s something.” So I wasn’t shocked when my biopsy report came back stating cancer. I knew I wasn’t going to die from it—at least not right away, and here’s why.

  One night when I was on-call, about a year before my diagnosis, I was asked to come in and talk with a family about withdrawing life support from their father. He was in the intensive care unit, had untreatable metastatic lung cancer, and had been comatose for weeks. He had made it clear to his children that he didn’t want to linger on life support.

  I was quite grouchy about this call since I had worked all day, and now I had to drive all the way back to the hospital. But I figured we’d talk, they’d withdraw support, and that would be that.

  It turned out that his two sons didn’t want to withdraw life support until the next morning. And they didn’t need to talk about it, they just wanted to meet me and see if I was the right person to lead them in prayer before their father died. So actually, it was a job interview.

  They were really wonderful men and before we left that night we prayed together.When we stood up to leave, the eldest put his hand on my arm. I looked up at him. He had the oddest look on his face.

  He said, “Sometimes when I pray I see things.” He hesitated for a moment and then said,“I just want you to know that there is still yet much work for you to do.”

  He said it with love, gentleness, and absolute certainty. We silently looked at one another for a moment. I did not feel afraid as if some fortune-teller predicted my future doom. Instead, I felt an overwhelming gratitude, as if I were running a race and someone was cheering me on with the words, “Hill ahead! Go for it, you’ll be fine!”

  I hugged him and thanked him. This happens all the time in ministry—you think you are going to help someone, and it turns out that they are there to help you. Sometimes they don’t even know they’re helping you, but this guy knew.

  As I drove home that night I thought, “Something is coming that will cause a delay, but will not shut down my entire life.” I felt calm, and well, curious. I also felt slightly embarrassed that I was so damn cranky about going to the hospital.

  So when I found out I had cancer I thought,“Ah-ha! So that’s the delay.”

  What’s Your Story?

  Patients have to know that I really care, that I’m not there to convert them or judge them or quiz them on their theology. I try to create a welcoming space for them to tell their stories without fear. If they can do this, then most people are able to reflect on their own pain and suffering, and hopefully are able to befriend and to find their truth in their stories.

  What does this mean to befriend your story? Is this some kind of New Age crap or counselor speak? No. It means that you can tell the story of your past, with whatever pain or joy or grief it contains, and tell it without shame and with some insight about who you are today and who you might become.

  Some people can hardly stand to think about from where they’ve come, let alone tell anyone else about it. Gabriela was one of these people. She was a beautiful seventy-five-year-old Puerto Rican lady. She reminded me of a short, stocky Elizabeth Taylor. Unlike Liz, Gabriela was very shy and quiet, and she was getting chemotherapy for colon cancer. She came in with her husband, and when I asked about her he answered for her in his big booming voice.

  “She was born in Puerto Rico! Her dad was a fisherman.” The louder he got the more she sunk into the bed and pulled the blankets around her until she looked like a tiny little speck of pepper on a mound of mashed potatoes. I tried talking with her about growing up there, but she didn’t want to talk about it.

  It was months before she told me that she hated for anyone to know she was from Puerto Rico because she moved to the States as a child, and all the kids made fun of the way she spoke. Because she was speaking flawless English, I almost didn’t believe her, but I could hear the pain in her voice.

  I also noticed that when one of the cleaning staff came in to empty the wastebaskets, Gabriela never greeted her, and once muttered under her breath, “Does she even speak English?”

  Gabriela hated her own story, and for her to make friends with it, she would have to recognize that as a child she was the victim of prejudice and cruelty, and the children were wrong to make fun of her. But because she had never let go of her hurt and resentment, she didn’t have any insight into her own behavior. She was still angry with some little kids who were mean to her back in the 1930s. So she became prejudiced and mean herself. But she just as easily could become compassionate and kind.

  The next time the cleaning staff emptied the wastebaskets, I turned to Gabriela and said, “You have to admire her for learning English and finding a job. It’s so scary to come to a foreign country.” Gabriela didn’t say a word, but I could tell she took that in.

  Do I know if she became compassionate and kind? No. I’d like to say every pastoral encounter is like a Disney movie with a happy ending, but sometimes it’s more like an indie film where everyone files out of the theatre saying, “Huh?”

  But You’re the Chaplain!

  At least a dozen people said to me, “You? Cancer? But you’re the chaplain!”And I found myself saying,“Well, why not?” It made me wonder if there were any occupations where a cancer diagnosis would be more acceptable. Meter maid? Dogcatcher? IRS agent?

  It amused me that people thought a job in the ministry would somehow exempt me from any badness in my life. “The rain falls on the just and the unjust.” It’s a pisser, but it’s true.

  I must confess that in my prayer and meditation that question did come up. I asked, “So, yeah, what’s up with the breast cancer?”

  Ah, Grasshopper, that’s for me to know and for you to find out.

  “I hate it when you get all mysterious on me.”

  Trust me, it is a good thing.

  That’s the kind of stuff I hear from God. But that’s my point really—that I do hear from the Divine. I never felt as if Mr. Martha Miyagi just hung up on me. And when I think back to the most painful times in my life, they all eventually led me somewhere better. So far I’ve had a resurrection for every time I’ve felt crucified. But it’s taken a lot longer than three days.

  At this point perhaps you are wondering about my take on Jesus. I do have a visual for Jesus because I grew up seeing pictures of him: the hair, the robe, the sandals, and the beard. If God the Father is Mr. Martha Miyagi to me, do I consider Jesus to be son of Mr. Martha Miyagi? In my mind, Jesus is closer to Jon Stewart than to Martha Stewart. I truly think he has a sense of humor, although my money is on her when it comes to fishes and loaves.

  Whenever I read the Gospels, I get the distinct feeling that Jesus was r
eally kind of a wise-ass, but that the Gospel writers cut out all his jokes. I’m suspicious because there is no evidence that Jesus ever laughed, and I find that highly unlikely.

  Think of all the social events he attended: weddings, dinners with Mary and Martha, dinners with the tax collectors and prostitutes, gathering little children unto himself. Jesus would have to be clinically depressed not to be laughing and joking with this bunch. And how about those Pharisees? Talk about ripe for parody. In my mind there is no question. Jesus was definitely a jokester.

  I took the cancer seriously, but didn’t want to take myself too seriously. That’s why it helps to have a Divine Jester around—although I’ve had some serious words with Him about that hair.