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Long, Difficult Journey or Who Gets to Tell This Story Anyway?

September 28, 2010

The nurse ushered us into the little room with the oversized round table and motioned for us to sit down. Leo was crying big angry protests, and his wails filled the room as I awkwardly tried to maneuver his stroller into the small space. Just a moment ago, the women at the registration desk were cooing over the cute baby, calling to the nurses to come and see him. The way they gushed over him it was clear they don’t usually get visits from newborns in the G.I. Unit.

Sara, my dear angel friend, followed us in with the diaper bag. She would be on Leo duty while I was having the colonoscopy. I already knew the polyp they found in my rectum the week before was cancer, but now we needed to go higher and rule out additional tumors in my colon.

The nurse who was handing me sheets of paper to look over was the same one who had assisted my sigmoidoscopy, the one who played loud heavy metal music on the radio while I waited for an hour for the doctor. This was when I was convinced that the rectal bleeding had to be no big deal, of course. This was when I was more concerned about David missing an hour or two of work, to stay with Leo during the procedure, than I was about my health.

“Can you play something else?” I had asked the nurse while we waited for the sigmoidoscopy to start in the cavernous exam room with its monitors and strange equipment.

She glanced up from her internet browsing long enough to give me a sour look. “We only get a few stations down here,” she said. She turned the dial. “Like it?” she asked as country music played.

“Not really,” I said. “Is there any classical?” I was feeling antsy about the appointment running so late, especially with the baby and David in the waiting room, and wanted calming music.

She turned the station, and yet more hideous rock blasted into the room. “How about we just turn it off?” I suggested. She let out a very long and very loud sigh, and switched off the radio.

“Want a magazine?” she asked. “Okay,” I said. She handed me several well-worn issues of Good Housekeeping dated 2008.

It was kind of like waiting to get my hair done, but totally different. I was wearing a thin hospital gown, completely naked underneath save for a heavy towel I used to cover my breasts since I was leaking so much milk. I lay on the exam bed in the middle of the icy cold room, flipping mindlessly through the magazines, and glancing nervously at my watch every few moments. Ah, the joys of waiting for doctors and procedures. When I finished the exam, I would give David my pair of green cotton hospital socks with the no-slip grippy bottoms, which for some reason he adores. And I would cry. “Did it hurt?” he worried. “No,” I said as the tears started to stream down my face. “She found something suspicious and wants me to come back immediately.” David hugged me and rubbed my back in soothing circles.

“You know why you’re here, right?” the same nurse was asking me now as I juggled Leo on my lap. I wanted to nurse him one last time before receiving the colonoscopy anesthesia. She peered intently into my eyes, waiting for my response.

“Yes,” I said. “We’re going to do the colonoscopy to make sure there are no other tumors.” It seemed obvious. She was there when Dr. Barron told me to make the colonoscopy appointment.

Clearly, this was the wrong answer, as she asked again pointedly: “But you know why you’re here?”

Leo was fidgety, latching on and off. I switched breasts, but he just wiggled more. I looked up to meet the nurse’s gaze. “Yes, I understand that the polyp you found is cancerous. I guess you knew that from the sigmoidoscopy.” There, I said the word she had just been dying to hear. Cancer.

“Oh, yes,” she said, happy it seemed to have her expertise called upon. “I could tell it was cancer.” She took a breath, and then dropped her voice to a whisper.  “It’s going to be a long and difficult journey, you know,”  her blue eyes peered into mine. “Do you understand what I’m saying? It’s going to be a long and difficult journey,” she repeated slowly, emphasizing the words long and difficult, “but you’re going to be just fine.”

My cheeks reddened and my ears began to buzz. I handed Leo to Sara because I was totally useless at soothing my newborn son. Up until that moment, I was truly in a good mood, if just a little tired and depleted from the colon prep and nursing all night long. I had worked so hard on having an upbeat and positive attitude since getting the rather devastating news of the diagnosis less than a week earlier. I had sobbed and lived through the sensation of terror freezing my veins. I had stayed up late at night and wondered why, what had I done wrong? I imagined losing my hair and being sick to my stomach. I replayed my parents’ experiences with cancer, all the haunted images of their endless treatments and disappointments and eventual deaths. Then I gazed into Leo’s sweet face and promised him that everything would be all right. I made a conscious decision to embrace this piece of information with as much intention and grace and prayer and love and hope as possible. Most importantly, I would not be like my parents.

I was prepared for the medical procedure ahead and the other tests that were scheduled for the week. But I was totally caught off guard by Ms. Long and Difficult Journey, who sat with her eyes fixed on me, waiting for my reaction. She looked at me with such intense compassion, this woman who less than a week ago was put off by my simple request to create a more calming environment in the exam room.

“I’m holding onto the hope that this is the only tumor and that it’s contained within the rectal wall,” I said. “This is my prayer and intention.” I had been doing my homework, too, and I knew that if I were Stage I, then surgery would be the only treatment necessary. The nurse gave me a doubtful look.

I was so used to being the good girl: the good daughter, the good student, the good patient. “Don’t rock the boat,” my father used to say. He always told my step-mother, Barbara, to stop being so pushy with the doctors. “Just keep quiet, or they won’t give me good care,” he’d say when she tried to intervene on his behalf. Whenever I thought of my father’s timid approach with doctors, I would remember the words of an Audre Lorde poem: “Don’t make waves is good advice from a leaky boat.” But I never really had the gumption to say those words, or to live by them.

I’ve been living the life of a good girl for a very long time. I’m almost 40 years old, for God’s sake, and still I yearn for approval. So instead of telling the nurse that she had no business sentencing me to an arduous future, instead of telling her that she overstepped her boundaries and was not my doctor, that she was in fact acting rather unskillfully and giving me counsel (opinion, actually) before I had done any diagnostic tests, instead of telling her to give me positive energy or none at all, I dutifully answered her questions about my medical history and signed the documents where she scribbled an “x.”

In the weeks and months that followed, I would think of that encounter. As my staging went from Stage II to Stage I to Stage III and I had to incorporate various pieces of information about my treatment path, Sara and I would exchange wry knowing looks and say “long, difficult journey.” Maybe the nurse was speaking the truth—after all, surgery, chemo, radiation, followed by more surgery and years of follow-up testing certainly could qualify as long and difficult. But the point is, who gets to decide how I experience my experience? Who gets to tell my story?

In the face of receiving a diagnosis as wrought with fear as cancer, it would be easy to feel powerless and small. That’s exactly how I would feel if I didn’t step back perpetually to take stock of my life and to view this diagnosis as an opportunity to release, realign, and heal on every level.

During the high holiday season, I visited the reservoir in my hometown to do the Jewish custom of tashlich—casting off “sins” into flowing water as a ritual cleansing before Yom Kippur. I sat on a rock, throwing bits of crackers into the water, praying for wholeness and forgiveness, praying for alignment and connection to God. As I sat there, I thought of my parents. They each struggled so much in their final moments, uncertain and afraid, it seemed, to let go even as their bodies failed them. Suddenly, it dawned on me that I never had a chance to say good-bye to them. Although I was present at each of their bedsides when they took their last breaths, they had lost consciousness before we had a chance for a final conversation. All these months of wrestling with unfinished business with my parents’ ghosts and memories, and it came to me so quietly and clearly: I never said good-bye.

So I did. In the pale sunlight on a cool September morning, I said good-bye first to my mother and then to my father.  In that moment, a breeze stirred up the water and the leaves rustled in the trees all around me. Peace flowed into me like warm honey, and I resumed my walk around the reservoir with a little smile on my lips. I took slow steps, breathing it all in: the thick foliage, the ducks on the water’s edge, the little dog running away from its master and then back again. And as I walked the thought came to me: I will not do cancer the same way as my parents. It’s my time to be here, and I choose to walk a different path. And then another thought: I am not afraid.

This is the story I choose to tell, and these are the words that I will tell it with.

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2 comments

  1. Dear Shira,
    Your blogs are gifts to all who read them- enormously moving, honest, graceful, and a tribute to your great strength. We think of you every single day with love and prayers for your full recovery.
    Hedda and Gary


  2. thank you for your beautiful writing, insight and depth. I feel so touched to be able to share your journey in this way….
    big love to you!



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