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

  Table of Contents

  Title Page

  Dedication

  Introduction

  One - A BIZARRE TWIST OF FATE

  Strength Training

  Putting on the Ritz

  How Did I Cause It?

  Moderate Dread

  What’s Your Story?

  But You’re the Chaplain!

  Mom

  Wes

  Death

  Two - RATS!

  Still Speaking

  Food for the Journey

  Calling All Patients

  The Heart of the Matter

  Looking the Part

  Running Away and Pushing Up

  A Clean Breast of Things

  No Clue Zone

  Role Reversal

  Three - THE PLAN!

  Wait, Wait Don’t Tell Me

  Mail Bonding

  Missing the Point

  Family Herstory

  Learn, Baby, Learn

  Chemopause

  Making a Plan and Checking It Twice

  Death Doesn’t Take a Holiday

  Four - THE PORT REPORT

  Reconstruction

  You’re Not Dead Yet

  Cheerful or Fearful?

  The Theory of Relativity

  Bad Luck, Sorrow, and Grief

  Bratitude

  It’s Only Temporary

  Five - CHEMO SAVVY

  The Angle on Angels

  Caring for Our Own

  An Angel by Any Other Name

  I Walk Therefore I Am

  What’s in a Name?

  The Housecreeper

  Six - TRIED IN VEIN

  Global Warming

  Letting People off My Hook

  Wedding Break

  Meltdown Moment

  Breast-fed

  Seven - A WHITE BLOOD CELL CHRISTMAS

  Promise Breaker

  To See for Herself

  Early Parole

  Great Lengths

  Promise Keeper

  Eight - INFUSED WITH THANKS

  Uncharted Territory

  Last Pill and Testament

  Rock Music

  A Bride in Me

  Sighed Effects

  The Peanut Is Brittle

  Nine - FLASH IN THE PAN

  Growth Spurt

  The Days of Wine and Chocolate

  The Port Authority

  Plenty Papayas

  Ten - RIB, RIB, HOORAY!

  Beginnings and Endings

  Chemo Forever

  Like a Virgin

  Son Stroke

  Son Light

  Now What?

  Acknowledgements

  ABOUT THE AUTHOR

  Copyright Page

  For Wes, my one and only.

  INTRODUCTION

  I am the general oncology outpatient chaplain at the Seattle Cancer Care Alliance (SCCA). I see patients who are receiving chemotherapy, getting radiation, having their blood drawn, or waiting to see their oncologists. I was in my fourth year at the SCCA when I received the upsetting news that my mother had been diagnosed with breast cancer. However, I didn’t have much time to be disturbed about it because five days later I was diagnosed with breast cancer. I couldn’t decide if her case or mine was the most disturbing, so I settled on being equally disturbed about both.

  Still, like having your car break down when you work at an auto repair shop, I thought if you had to have cancer, it was pretty convenient to work at a place that treats it.

  “But you’re the chaplain! You should be immune!” I heard this from a lot of outraged people, as if I had some special spiritual protection.

  So what if I’m the chaplain? I’m a Christian, the faith that’s all about the crucifixion of the guy who is considered the Son of God! I mean if the Son of God can’t get a break, why should I? I’m only the chaplain.

  So I chose to have my surgery and chemotherapy at the University of Washington, the medical center affiliated with SCCA. During my first appointment with my oncologist she made it clear she completely understood if I wanted to go elsewhere if I felt uncomfortable or for reasons of privacy.

  “Why,” I asked, “would I not want to be treated at a place that is filled with people I know and love? And why would I not want to be treated at a place where I have witnessed the finest care given in my twenty years as a hospital chaplain? And above all, why would I not want to be treated at a place where I know the location of every single restroom?”

  She got my point.

  Besides knowing the staff and the location of the restrooms, I had another advantage. I had seen people deal with cancer a thousand different ways—some inspiring and some less so. I’ve listened to patients who tried to pretend cancer is a million yuks. It’s not. It’s not even a hundred.

  And I’ve listened to people who are whiny and tragic. Even if your situation is tragic, it doesn’t feel good to whine—for very long. Forgive me if I sound harsh. I’m not talking about expressing your feelings, I’m talking about whining, and there is a difference.

  Whining is basically about being stuck.You are stuck telling the same story in the same way in spite of everyone’s efforts to help you resolve it or reframe it or find meaning in it.

  Somewhere between the joking and whining, there is this precious place of absolute centeredness—peace in the eye of upheaval and chaos. It is an assertive kind of peace because it takes effort to stay grounded and centered while things swirl around you. It’s not as if you’re just sitting there blissed out, denying your pain or your fear. It means you feel your feelings, give them a voice, and then move on.

  I read a new patient’s chart and thought, “Holy-Jesus-God-and-All-the-Saints! What a disaster!” But then I met this patient, and she was all upbeat and grateful for this and grateful for that. She said, “Here’s a funny thing that happened on my way to brain surgery... ”

  I wanted to say,“Have you read your chart lately?” But I could tell she knew exactly what was going on and was being completely authentic. It was all in how she chose to be with her situation. She was her Best Real Self.

  That’s how I wanted to be: my Best Real Self. For some people that means being more private about it, but for me, that meant being very open about my diagnosis. So I sent out e-mail updates on my treatment progress. Friends and family wanted information, and they also wanted to know how I was with what was going on. And my therapist friends wanted to know how I was with how I was.

  Knowing that time is precious and e-mail can be overwhelming, I included just a few thoughts and feelings in each message. I wanted to write more about what surprised me, what helped me, and what disappointed me, but it didn’t feel right to send six page e-mails. It’s an e-mail, not an electronic book.

  I learned much about cancer from being a patient, and probably the most astounding thing to discover was only a small part of the cancer experience is about medicine. Most of it is about feelings and faith, and losing and finding your identity, and discovering strength and flexibility you never knew you had. It’s also about looking at life and staring death in the eye. It’s about realizing the most valuable things in life are not things at all, but relationships. It’s about laughing in the face of uncertainty and having the courage to ask for more chocolate and less broccoli.

  And, if you haven’t figured it out by now, it’s about realizing cancer is the best excuse for getting out of practically anything—except chemotherapy.

  And although many people asked me how I felt about it, what it was going to be like to lose it, and how I was going to deal with not hav
ing it ...it’s not about the hair.

  One

  A BIZARRE TWIST OF FATE

  From: Debra

  Date: April 28

  To: Everyone

  Subject: A Bizarre Twist of Fate

  Dear Family and Friends,

  Last Wednesday I was shocked and dismayed to find out my mother was diagnosed with breast cancer. It is Ductal Carcinoma In Situ (DCIS), and it is curable with a lumpectomy.

  In a bizarre twist of fate, this past Tuesday I was diagnosed with breast cancer. Always competitive, my tumor is a teeny bit more serious: Stage I, infiltrating ductal carcinoma.

  My first thought was, “Now I can be in the first wave at the Danskin Triathlon!”

  My second thought was, “Oh, shit.”

  I tried to go back to that first thought, seeing myself in the group of cancer survivors who start the triathlon swim, but my mind kept going back to, “Oh, shit.”

  But the cancer is, in my friend/surgeon’s words, “Curable!” In the past I thought of the word only in reference to hams and salami. I never thought I would be grateful to have it applied to me.

  At first I thought we could take care of things with a lumpectomy. Well, I went from lumpectomy to mastectomy when DCIS was discovered in another quadrant of my breast. My surgeon looked very apologetic as he explained he couldn’t just take a scoop out here and a scoop out there because, uh—well, there wasn’t a lot of tissue to begin with and . . . uh . . .

  “You mean,” I said, “it would be like scooping ice cream. Two scoops from a gallon is no big deal, but two scoops from a pint—well, that leaves a mess so you might as well just eat the whole thing.”

  He nodded but looked vaguely nauseated by this comparison.

  But now we had a plan, so I could call my parents and give them the news. It was just hideous telling them, although I tried to be really upbeat. My mom answered, and I’ll tell you right now that my voice gets very high when I lie.

  “Hi, Mom! Talk about coincidence! Can you believe it? I have breast cancer, too!” I sounded like a shrill game show host giving out the grand prize. She didn’t buy it. I could tell by the strangling sound on the other end of the phone. It turns out her surgery is scheduled soon after mine—too soon for me to be with her for hers.

  I’m not overjoyed to have cancer, but I do feel very cared for and held and safe. I’m not keeping this a secret, because I refuse to participate in the shame and stigma around cancer. I figure the more people who know, the more prayers and support! I have a friend whose husband has advanced prostate cancer, and he refuses to tell anyone. She is buckling under the strain.

  My dear husband, Wes, is doing okay, although it took a while for it to really sink in. It was the session with my surgeon and all those words like “margins,” “malignant,” and “sentinel node,” that made him know this was really happening.

  One of my patients said, “Wow, having cancer will make you connect even more with your patients!”

  I said, “If I connect any more with my patients I’ll be having sex with them.”

  I would have liked to call each one of you, but I’ve had so many invitations to mammograms, ultrasounds, biopsies, and MRIs. My cancer dance card is full.

  Anyway, there you have it. Thanks for all your support and prayers.

  Love and Hugs,

  Debra

  Strength Training

  The night before my breast biopsy I was emceeing a benefit concert for Multifaith Works, a Seattle agency for people with AIDS. It was the fourth year I had done this, and I loved getting all dressed up, introducing musical acts, and cracking jokes. It was basically being a diva for a night.That night I was wearing a teal blue jersey knit dress with cutaway armholes and a plunging neckline. It was not the kind of dress with which you could wear a bra.This didn’t matter to me because I’ve never had huge boobs. I loved the way I felt in the dress—like a million bucks.

  Before I left the house that night I looked closely at myself in the mirror, and I thought about the biopsy the next day. Like a lightning bug on a summer evening, the question flickered through my mind, “How long will I be able to wear this dress?” Then the thought was gone, and it was time for the show!

  After the concert, a little boy came up to me and asked, “Are you strong?”

  His mother laughed and said,“He’s been looking at your arms all night.”

  “I’ve been training for a triathlon,” I explained. “So I guess I am pretty strong.”

  The biopsy the next day was just tolerable. I wasn’t screaming, but I was so wishing I wasn’t lying there having my breast shot with a tiny spear gun.The “area of concern” was close to my chest wall and difficult for the doctor to reach. I noticed no one used the word “suspicious” probably because it makes patients feel, well—suspicious.

  When the doctor was finally done, she bandaged me up and gave me this darling little ice pack to stick in my bra. It was round, about the size of a small biscuit. I saw immediately that once it was thawed, it could be used to, how shall I say—enhance the overall contours of the chest area. Marvelous. I asked for another one so I could have a matching pair.

  Within five minutes of getting dressed, the local anesthetic wore off, and my breast was throbbing. I ran into one of my doctor buddies on the way out of the clinic.

  “This is hurting way more than I thought,” I said. “What should I take for the pain?”

  “Do you have anything else to do today?”

  “No.”

  “Take two Percocet.”

  “And call you in the morning?”

  The two Percocet did the job with my pain. But the next morning, to my surprise, my breast had gone up a whole cup size!

  “Looks like you had a bleed in there,”Wes said.

  He was right, but there was nothing to do now but wait. And wait.

  I’m pretty good about stuff like this—I don’t usually spend all day obsessing. So I went about my usual activities. But in the same way your tongue goes to a bite mark in your mouth, I would think, “Biopsy? What’s going to happen with that?” I didn’t stay there long though. I’ve spent hundreds of hours talking with people about how it’s a waste of energy to worry about what you can’t change. So a little of that sunk in.

  Five days later I still hadn’t received the results of my biopsy. I kept checking for my results online, which is a benefit of getting care at the medical facility in which you work. Many people were horrified about this, but I was insanely curious and knew I wouldn’t freak out whatever the results were.

  That morning I “accidentally” ran into a friend of ours who is a surgeon with the clinic. (Hereafter known as Our Friend The Surgeon.) He asked me what was new, and I told him about my mom and how I was waiting for my biopsy.

  “Biopsy?” He called down to the pathology lab, but it wasn’t ready, and he asked them to call him as soon as it was. He said he’d page me the second he knew.

  Okay, here is what is totally bizarre about that encounter: I almost never see him in the clinic, let alone the south stairwell. The couple times I have seen him, he is crazy busy and as much as I love this guy, I wouldn’t dream of asking him to stop and chat. How is it that I worked there three years and never saw him there before and have not yet seen him there again?

  I was pretty busy seeing patients all day. That afternoon I said to myself, “Be a good dog and finish all your charting, and then you can look up your results.” It was a beautiful day in April, and I was sitting in this gorgeous temporary office I had.The sun was streaming through the window, and I was a happy little clam sitting there writing charts. I finished. Good dog! Then I looked up my pathology report.

  “Infiltrating ductal carcinoma, Nottingham grade I/III.”

  I had this immediate physiological reaction: instant sweat and pounding heart.The feeling was a lot like how you feel when you serendipitously spot someone on whom you have a major crush. But there was no ensuing fantasy. I got up to see if any of my doctor frie
nds were around, but of course, they were seeing patients. I had this urge to tell somebody right away.