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

by Debra Jarvis

  The wedding was held outside of the Brazil Room in Tilden Park. We stood under an arch made of twigs and flowers and a huge green lawn spread out behind us to the edge of the woods. Colin’s family is Scottish, so there was a bagpiper and lots of men running around in kilts. Colin wore a dress kilt. Karen was gorgeous in a magnificent red taffeta gown—very Gone with the Wind-y.

  I really do make the homily as personal as I can, and because they were actors, I talked about scripts. We all have different scripts in our heads about lots of things: marriage, children, death. These scripts are based on what we’ve seen or what we’ve read or what we’re told. We don’t realize we can script our lives any way we want.

  This is what I told Karen and Colin. “Just know you two can write your own script and make your marriage be any way you want it to be. And know you can rewrite it at any time you like.”

  As I was writing their homily, I realized I felt the same way about my cancer experience. There are a lot of books and movies out there about the horror and anguish of cancer and chemo. I wanted to do it with more humor and less drama, while at the same time being real. You can’t control what life gives you, but you can choose your response. That means you don’t have to follow anyone’s script but your own.

  Speaking of which, I always give the couple a wedding blessing, which is not something you find in all ceremonies. The one I chose for Colin and Karen was the Apache Wedding Blessing. I asked them to join their hands together, and then I wrapped their hands with the ends of my stole. Then I put my hands around theirs. I call this the “hand sandwich,” and I make this little joke to myself to keep from crying.

  It is this particular moment in the ceremony where I am always fighting back tears. Perhaps it is because the three of us are standing so close together, and I’m sucking up some of that love they feel for one another. Or maybe it’s the paradox of having an intimate private moment between the couple and me be so undeniably public. I always feel overwhelmed at the honor of giving a wedding blessing, so perhaps that’s the reason I choke up.

  But this time I knew I was near tears because I looked at Wes sitting in the front row and thought, “You were marvelous through the ‘for better’ and ‘in health’ part. And you’re astonishing in this ‘for worse’ and ‘in sickness’ phase.”

  So we stood there with our hands together, and I took a moment to clear my throat, which gave my mind time to say, “Hand sandwich. Ha-ha! Hand sandwich!”

  I smiled and looked up at them and said, “Now you will feel no rain for the two of you will be shelter to the other. Now you will feel no cold for each of you will be warmth to the other. Now there is no more loneliness, but you are two persons with one life before you. Go now to your dwelling-place to enter into the days of your togetherness, and may your days be good and long upon the earth.”

  The congregation reacts differently to this blessing depending on the situation. In Seattle the first line gets the crowd stirring. At a freezing outdoor ceremony or a winter wedding, it’s the second line. Colin and Karen had been living in togetherness for some time and had already bought and remodeled their dwelling-place together. It seemed to me that everyone sighed on the last line: “And may your days be good and long upon the earth.”

  Meltdown Moment

  “Hey—wait a minute!” I said aloud when I saw the posted flyer about the staff support group,“Caring for Our Own.” How could there be a support group without me knowing about it? Shouldn’t I be leading the group?

  I felt like a kid who just found out her parents were in therapy because of their unruly child. I knew it wasn’t just about me, but also about my co-worker who was receiving treatment. And in fact, it wasn’t really about either of us, but was about how the staff felt about caring for us.

  The ugly head of role and identity issues reared up and bit me right on the ass. I wanted to facilitate the support group! I was a chaplain. I was tired of being a patient. My feelings regressed all the way to “I don’t want to eat my vegetables! I want candy!”

  This was my state of mind when I turned the corner around nursing station A/B, just before my infusion, and one of the nurses sang out, “Welcome, Debra!”

  “What?”

  “You’re one of our patients and I’m welcoming you!” Any other day and I would have laughed and smiled, but I had transmogrified into a four-year-old. Like any good four-year-old worth her salt I started crying. And even as I said the words,“I don’t want to do this anymore!” I realized I was not even halfway through my chemo. The nurses all looked horrified, which compounded my misery because I was making them feel bad. Ping-pong suffering!

  I stood there unable to move. One of the nurses came up, put her arm around me, and walked me to my bed. I don’t mean she had her arm resting gently upon my shoulders. No. She was literally pushing me down the hall.

  When I got to my room I got into bed, and the nurses brought me warm blankets.

  “How about a little Ativan?” one of them asked. (Ativan is the pharmaceutical equivalent of hot milk and graham crackers.)

  I nodded still sniffing and blowing my nose. This was not in my script. What about “more humor, less drama”? What about “grace and charm”? I forgot about holding things “lightly and gently,” which means deviating from the script or the plan is no big deal.

  Now if any other patient were behaving like this, one of the nurses would have come and found me. She probably would say something like “The patient in room 31 is just having a hard time, really tearful. Could you go in and talk with her?”

  So who could be the chaplain to me? My boss had asked me if I wanted a chaplain and I said no. My department was small—four people including me. We didn’t see one another much because we each had our separate caseloads and worked in different buildings. I thought it would be weird to suddenly start confiding in one of them just because I had cancer.

  So while I waited for my lab results and before Wes got there, I thought about what I would say to myself as my own chaplain.

  “Hey, nice shoes,” said my chaplain self with a big grin.

  “Half price. Macy’s.”

  “Sweet. So how are you doing? You look a little verklempt.”

  “Oh, I’m just a little freaked out because nobody told me about this staff support group.”

  “Sounds like they must care about you a lot, if they need a support group about giving you care.That’s a happy problem.”

  “Yeah.”

  “If you were facilitating the group how would you handle it?”

  I thought for a moment before answering myself. “I wouldn’t go running to the employee/patient and say, ‘We’re doing a support group because of you.’ I’d probably just quietly let the staff know about the group.”

  “Would you keep it a secret?”

  “No! That would be so creepy!”

  “No kidding. So you would pretty much handle it the way they’ve handled it.”

  “Um, yeah.”

  “Cool. What else is going on with you?”

  “Most of the time I’m okay. But today, my implant is hurting and I’m nauseous and tired because I haven’t been sleeping. I’m trying to be a good soldier.”

  “Since when are you a fan of the military?”

  “Since never.”

  “How about if you just feel your feelings and then move on from there?”

  “Okay, so I feel sad and depressed and sick and whiny and shitty and my chemo stretches out before me like a cross-country drive from Seattle to Miami. I miss my old strong and healthy self, and I’m afraid it’s only going to get worse because of the cumulative effects of this chemo.”

  My chaplain self nodded sympathetically. “It’s good to name all the feelings. Makes everything a little more manageable. And don’t forget to tell your nurse you’re not sleeping.”

  “I’m feeling pretty sleepy right now.”

  “That’s the Ativan.”

  “Would you pray with me before you go—the kind of
prayer with words you say with other patients?”

  “Sure.” I reach over and hold my hand. “Ground of Our Being, we can’t pretend to understand everything you allow in our lives, but we do know you are with us in every moment of every night and every day.We pray now you would lay your healing hand upon Debra, help her to relax into your care. We pray for both Debra and Wes that you would keep their hearts open to your spirit of peace and comfort and love and strength. And we pray all would be blessed, all would be healed, and all would have peace. Amen.”

  I would have said amen, but I was asleep.

  Breast-fed

  There was nothing like losing my breast and getting chemo to give me street cred with the patients. My treatment experience was turning out to be pretty useful for many reasons. One is that I was walking proof you could be on CMF and have a life. This was particularly important for first time patients. The nurses often pointed at a room and said, “First time CMF. Pretty scared.”

  “Say no more.” Then I’d waltz in there and let them know I was on the same stuff! When I shared this information every single CMF patient was so relieved. There’s just nothing like talking with someone who is going, or has gone through it.

  Then there was the matter of the replacement part. First you should know the nurses always asked me first if they could tell their patients about my treatment. I always said yes. One day I was asked to talk with a young woman from Alaska who had questions about reconstruction.

  We chatted a bit about the weather in Alaska, and we talked about the cute little crocheted cap that covered her bald head. Then she lowered her voice and said, “My nurse told me you had breast reconstruction—an implant.Will you tell me about it?”

  “Oh, sure,” I said. I recounted my whole experience even including the phrase, “hurt like hell.” She lapped up every word, starving as she was for information.

  “Wow,” she said. “Thanks for being so honest and open about it. You know I’m not from here, and I don’t have anybody I can ask about this.” She paused and then leaned forward. “Would you show it to me?”

  “What?!”

  “Your breast. Could I—see it?”

  This was the moment, some would later say, that I should have referred her to a support group or a cancer hotline, or an Inter-net site on breast reconstruction. But they weren’t there in that moment, watching her bite her lip and twist the corners of the blankets. They weren’t looking at her beautiful young face as she was wondering if she would ever again be an attractive woman. They didn’t see the pleading look in her eyes or hear how hard it was for her to ask.

  I said, “Sure.”

  I was wearing a long dress that had neither buttons down the front nor a zipper up the back. I had no choice but to hike it up over my shoulders, so I was in nothing but my underwear. I hoped nobody would come bursting through the curtain catching the chaplain half-naked with a patient.

  She looked at my breast critically for a few moments and then stretched her hand out toward me. “May I touch it?”

  I thought, “Well, I’ve gone this far.” I realized it’s exactly this kind of thinking that causes young women to lose their virginity.

  “Yes,” I said.

  Twenty years of ministering to the spiritual needs of the sick and dying. Three years of seminary, an internship in the parish, an internship in the hospital, board certification, and my whole ministry had come to this: letting a stranger touch my breast. The irony and the wonder of it took my breath away.

  I looked up at her and her eyes were shining with tears.“Thank you,” she whispered.

  And suddenly it all came flashing back to me—the scripture I chose for my ordination. It was from the book of Isaiah, where God asks, “Whom shall I send?” And the prophet Isaiah answers,

  “Here am I. Send me!”

  But, of course, there was nothing in my ordination or any of my training about exactly what I’d be sent to do. But then that’s my task: to be open to serving in even the most bizarre ways. I think if Mr. Martha Miyagi supplied us with a list of all the ways we will be called to serve, we’d never sign up.What if at my ordination I received a list that included “get breast cancer, have mastectomy, receive chemo, and show a reconstructed breast”? Better we should figure it out as we go along.

  After she was done examining my breast, and I settled back into my clothes, we talked a little more, comparing notes on chemo and nausea. When I stood to leave she said,“I’m so glad you came by. There’s nobody else I could talk with about this.”

  “Well, I was sent,” I said.

  “Oh, you mean by my nurse.”

  “Yes,” I said. Because I believe God speaks through nurses all the time.

  That’s the funny part about being a chaplain: everyone thinks I’ve got the Holy Spirit on my speed dial.The staff will say things like “Would you put in a word for me with God? You’ve got a better connection.” But I watch the Spirit using their hands and using their words all the time.

  Often the medical staff will tip-toe in to check a chemo pump, and they’ll be all apologetic and I’ll sometimes think,“Well, if you had known we were talking about SpongeBob SquarePants you wouldn’t have been so respectful.”

  But I don’t mention it.

  However, I do encourage the medical staff to talk with their patients about spiritual issues. When patients ask their nurse or doctor, “Do you think there’s a God?” this is not the time to run out and call the chaplain. They are asking that person in that moment. It’s like being in a restaurant when you are just about ready to start your meal and you see something unrecognizable in your soup. A busboy walks by and you ask, “Excuse me, but is this a fly in my soup?”

  You don’t want him to reply, “Oh, let me get your waiter.” The busboy is right there. You’re asking him. You don’t have to be a waiter to recognize a fly. You don’t have to be a chaplain to discuss spirituality.

  So I urge staff to relax and share their spiritual beliefs for a few minutes. Of course, this doesn’t work the other way. I can’t be a doctor for a few minutes—although I have been known to give advice on constipation.

  Seven

  A WHITE BLOOD CELL CHRISTMAS

  From: Debra

  Date: December 1

  To: Everyone

  Subject: A White Blood Cell Christmas

  Dear Fabulous Family and Friends,

  Santa has already come to the Jarvis–Van Voorhis family. I’m finishing chemo three weeks early. Woo-hoo! My last infusion is December 8, the day after our twentieth anniversary! Woo-hoo-hoo!

  My oncologist suggested stopping after pointing out my white blood cells were deeply unhappy. Most of them had packed their bags and left for Florida, and the ones that were still here were protesting and threatening to leave.

  I am thrilled and look forward to once again being able to eat chocolate and drink wine. But I have some positive things to say about chemo. Because I used to hate them, we had a backlog of those tart herbal teas with names like, “Zesty Grape Spittle,” “Corrosive Cranberry,” and “Acid Berry Sting.” But now I love, love, love them. I crave sour things, and I crave salty things. The clerks at Whole Foods had to pull me away from the deli after they found me face down in the Kalamata olives. I have lemon sorbet for breakfast. I sneak shots of balsamic vinegar. I dream of lime-flavored tortilla chips.

  So hopefully I will get my normal taste back, but I will not get my estrogen back and boy, do I miss it. To counter the hot flashes, I was put on a low dose of Effexor. It was magic! Hot flashes gone!

  A few weeks after being on Effexor, my mother visited me. I complained about blurry vision and she said, “Honey, you’re just getting old. You’ll have to wear glasses now.” I was so comforted. I took her to the airport and put her in the wrong line, not because of the “getting old” remark, but because I couldn’t see the airport signs!

  Depressed, I came home, looked in the mirror, and said, “You’re getting old—and why are your eyes totally d
ilated!?” The next day one of my colleagues looked up Effexor and w-a-a-a-y down on the bottom of the list of side effects was “excessive pupil dilation.” Wes thought I looked sexy with my dilated eyes. I couldn’t see a thing and told him he looked sexy, too.

  So now I’m on a combination of meds that are not quite as effective. When I wake up and wave the blankets up and down to cool off, Wes always partially awakens and asks, “Wha-a-a-?”

  I whisper, “Darling, you’ve won the Nobel Prize in medicine.” He then goes back to sleep and always wakes up in a good mood.