Archive for September, 2010

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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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Days of Awe

September 13, 2010

The ten days that begin with Rosh Hashanah and end on Yom Kippur are often referred to as the Days of Awe. It’s during this time period that the Book of Life is opened and the fate of every person is recorded and sealed for the upcoming year – who will be born, who will die, who will prosper, who will suffer, and so on. I don’t know if this “book” is literal or metaphoric, or some mystical combination of the two, but the idea that you are being judged and your fate determined is humbling, to say the least. This year, as I pray for complete healing from cancer, the holidays are particularly poignant.

The first Yom Kippur after my mother died I went to services at Havurat Shalom, a small funky egalitarian Jewish community that’s located in an old Victorian house near Tufts University. Having just lost my mother, I was already in a time of introspection and mourning when the holidays came along. I thought a lot about God. I thought a lot about my mother’s spirit. Where was she? What happens when we travel on? During the lay-led service, I prayed with newfound devotion, taking in the words of the holiday for perhaps the first time in my life.

What used to be the living room and dining room were packed with people wearing all white, some with their faces entirely concealed in their white prayer shawls. The mood of the day was somber, as is fitting for Yom Kippur, but far from morose. I remember it was warm for October, and the room felt close and stuffy. I should mention now that I am far from being a literate Jew, and only began having my own adult relationship with Judaism in my late 20s by way of a spiritual path that took me through Quakerism, Women’s Spirituality, and Tibetan Buddhism.

Standing there on Yom Kippur in that crowded sea of white, I davened with my whole heart. I felt raw and vulnerable from losing my mother less than two months earlier, and having fasted for nearly 24 hours already, I was empty like water. My heart and spirit cracked wide open and the prayers reverberated through my body like an electric impulse. We were reaching yet another collective crescendo— Adonai Adonai el rachum v’chanun—when I felt myself suddenly transported.

I was no longer in this house in Somerville, Massachusetts, but in a place I can only describe as a clear space outside of time and physical reality. I continued praying to God to be granted forgiveness for all of my shortcomings. I imagined seeing myself with the eye of God, the compassionate vision that takes in all of the goodness and all of the smallness and ignorance and misdeeds. And then in that place of no time and no space, I turned, and saw my mother. She looked so lovely, the way I remembered her before cancer ravaged her beautiful face. She was also wearing white. And she too was praying for her soul before Hashem. We didn’t talk or otherwise interact. We were each engaged in our own intensely intimate moment with God, the living and the departed brought together on Yom Kippur in parallel activities. I realized—it was so obvious how could I have not known this before—that by atoning for our transgressions each year we are, among other things, given the chance to prepare for death.

It was so sweet to be with my mother again. But at some point, the mood shifted. Someone was talking into the microphone, and I could hear the distinctive rustle of people finding their seats. I opened my eyes and returned to the reality of the room with great reluctance. I missed my mother, and the awareness of her loss swept through me all over again. In the ten years since her death, I have met my mother on numerous occasions in the worlds of dreams, meditation, and prayer. But that was the only time I felt like my life and her life had actually intersected. We were doing the same exact thing at the same time.

As I enter my fourth cycle of chemotherapy, death and dying are not far from my thoughts. Even though I feel remarkably well for someone who has endured natural childbirth, a major five-hour surgery, and chemotherapy within the last six months, and don’t feel in the least as though my death is imminent, a cancer diagnosis is reality’s way of slapping you in the face. Wake up!  How have you been living your life? More accurately, how have you been hiding from your life? What has gone so radically out of balance? I’m not saying that people create their diseases—that’s a slippery slope of blame and shame I have no interest in—but I am utterly convinced that if I don’t do the work of deeply searching my life for the ways in which I have lived out of truth and harmony with my spirit that I will not heal. Perhaps cancer is asking me to do the work of Yom Kippur, not just for one day, but as a lifelong query.

Driving to my sister-in-law’s for Rosh Hashanah dinner last week we passed an old cemetery with tall, thin slate headstones scattered throughout the grass. Toby, our three-year-old, asked: “What are those gray things?” I explained that it’s a cemetery, a place where people are buried after they’ve died. He was silent for a while, so I knew he was thinking hard. “I don’t want to die,” he said finally. It was the first time he really understood the concept of death. “I don’t want Leo to die, or Mama to die, or Papa to die,” he said in the same demanding tone of voice he uses after we tell him “no” to something. As his mother, I felt the immediate impulse to assuage his fears: “Don’t worry,” I said, “we’re going to be around for a long time. Besides,” I added, “it’s just the body that dies. Your spirit lives on and on.”

Even as I spoke those words with tenderness and levity, I was aware of another voice inside myself, the one that asks: “Are my children going to grow up without a mother?” How do I come to terms with this question? How do I get up each morning and face this exquisite uncertainty?

In a household with a three-year-old and a six-month-old, there isn’t much room to wallow in fear or despair. I get up because I hear Toby running at breakneck pace to grab a banana out of the fruit bowl. Some mornings, he pads downstairs to the playroom, where I’ve been sleeping on the extra bed, and begins playing with his favorite school busses. When I ask him to lower his voice, he responds by making even louder beeping sounds that ring through my skull like an evil alarm clock. So I tell him he has a choice: he can go upstairs or snuggle in bed with me. The next thing I know, he’s nudging my head over to make room on the pillow and I have my arms wrapped around his warm little body.

In other words, I show up because I am needed. And I show up because I told myself a long time ago that showing up for life, for all of its beauty and all of its tragedy, is the only way to really be here. I am so grateful to this cancer for challenging me to drink it all in, to open my heart more fully and deeply, to be more honest about my feelings and less apologetic for my existence. To realize how deeply I am attached to my loved ones and to show them this love regularly. Not on birthdays, not on anniversaries. Now! Now! Don’t bother with waiting. Run to your life. Meet yourself with open arms. And when you do find yourself, love yourself with all of the tenderness, compassion, and forgiveness of a mother’s love. Of God’s love. This is the prayer I return to over and over again this Yom Kippur.

Sometimes I find myself narrating my life. Maybe it’s a curse of being a writer. A few weeks ago, Toby, my sister Pam, my niece Maddy, David, and I were dancing in the kitchen to our family’s newest favorite CD. “Smile by smile, day by day, love gets stronger in every way, love won’t stop, love goes on like your soul, like your soul, love goes on like your soul…” Toby was throwing purple and blue silks in the air. “This is the way we make the love grow…” David grabbed Maddy’s hands and spun her in circles to the music. I thought to myself: I’m happy. I think I even said it out loud.

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