Starry Starry Kite

Emotional Waves


In August 2000, I couldn't have told you when I was last sick. Vegetarian for 15 years, training rides every morning, lunch hour runs, weekend hikes in the mountains. Nearly every snowy hill in America had met my snowboard, and I’d been teaching yoga since 1985.


Then I returned from a sea kayaking trip in Alaska, where the final 5-mile crossing left me panicked and confused. Why was it so hard? My friend Yvonne, an ER doc, looked at my white lips in horror. “Your hospital, or mine.” It wasn’t a question. In the ER, my shockingly low hemoglobin prompted a bone marrow biopsy, leading to a diagnosis of chronic lymphocytic leukemia (CLL), a malignant cancer in my bone marrow and blood.



The oncologist delivered the news to me without emotion. I left his office unconvinced; this guy didn’t know me. But after weeks of exhaustion, I agreed to begin chemo. I also juiced like crazy. And drank horribly bitter root tea, slurped miso soup, and promptly vomited all of it.


Chemo further decimated my low blood counts. Friends asked if I was getting restless without any exercise. Were they out of their minds? Everything was now exercise. Brushing my teeth was a workout; climbing stairs was absurd. I used to run for hours; now I couldn’t make it around the block.


I remember lying in a hospital bed for chemo, incensed. Hadn’t I eaten my damn broccoli? Some gentle souls who are diagnosed with chronic illness provide us with a model of gracious mortality. Not me. I was bewildered and terrified; didn’t I run a marathon just last year? I lay awake, soaking my sheets with night sweats, imagining every heartbeat sending cancer cells all through my body.


Apparently, caring for someone with chronic illness was not in my boyfriend’s plan; he moved out within a few months. I sobbed looking through old photo albums. I needed to see a good therapist. Annie and I talked at length about my childhood and my fears. People sometimes speak of misfortune as retribution or fate, but I don’t believe that cancer is intentional; it’s just the way some lives go. Eventually, I learned to name what I was feeling and move forward. Annie said to me, “You may have cancer, but you’re healthy.”


Right.


But I’m nothing if not persistent. Imagery sessions at a health crisis center encouraged redirecting fear and accepting support. “Picture your illness first, and then visualize a state of perfect health.” My illness image was a frightened fawn, bound by a thick, locked chain. Health was a thrashing, fierce and happy storm, with full sky lightning, thunder, sheets of rain, and all manner of debris in the air. I've always loved thunderstorms. The facilitator looked worried.


As a woman diagnosed in my 30s with a disease that usually strikes men twice my age, my case intrigued my new oncologist. Dr. Larson gaped when I walked into the office with hemoglobin below 4.0. Many people are bed-ridden with a count under 9. He ordered additional blood tests. There were more needles than I could count. I didn’t do well with all the poking and prodding. Eventually, a port implanted below my shoulder spared my forearms. And what were these words coming out of my mouth? No more talk of carbon bike frames, or elevation change; now I spoke about reticulocytes, hyper-cellular bone marrow and cyto-genetic analysis. Never in my life did I imagine I’d be reading a hematology magazine called Blood.


Some cancer patients use synthetic erythropoietin to stimulate their bone marrow to make more red blood cells. Normal EPO is about 20. Mine was over 1200. A loudspeaker was blaring in my bloodstream, but my bone marrow wasn't responding. More than fifty transfusions of packed red cells were needed to keep me alive in those early days. That’s like five adults giving me all their blood.


Cancer is stealthy, and it has allies. Infections are threats. Strep throat is terrifying, a fever potentially lethal. Daily injections boosted my neutrophils, but made my bones ache constantly. After several bone marrow biopsies (a hollow needle jammed into the back of my pelvis), I knew exactly what to expect. It still leveled me. All of this was an endless barrage on my battered body.


My prognosis deteriorated over time. At first, I was told that most people live ten years with this diagnosis. But because of my persistent and severe anemia, my prognosis was about four years. After some additional testing, they found a worrisome antigen called CD38 on 87% of my B cells. This was terrible news. A year and a half was about what I could expect.


The hardest part of those first few months were the emotional waves. Lying in bed, drifting off, I’d suddenly panic – I wanted to see my sister’s young son grow up. I wanted the chance to grow old. But the waves gradually became familiar. They resembled sea kayaking. I needed to reach deep for stability and make direction adjustments on top of the waves. Breathe, let them pass, and move forward.


I wanted to believe I was exceptional; with the right attitude I’d be back on my snowboard. I visualized the headline: Cancer Patient Completes Canyon Run. I wrote an essay, I Got Plans, detailing what I’d do just as soon as cancer realized this girl wasn’t going down. One night, I got up from my seat in a theater, still laughing about scenes from the comedy, and it hit me that I’d forgotten about cancer for hours.


There’s no medical explanation for my first remission. The day after some bad news about my counts (my hemoglobin was 5.5, and I needed a transfusion), I was home alone on the couch, and I heard a voice. “You need to decide whether or not you want to be here.” My hair stood on end. Then I felt myself get up and ‘walk away’ from cancer.


It happened at the end of a treatment week, so I was pretty fogged in. Over the next few days, I felt my usual poisoned malaise. But following the toxic fog, I felt better than usual. I went in for a blood test, hoping my hemoglobin had not dropped. My hemoglobin was 9.1 (I hadn’t been near that number for months.) The nurse cheered. I laughed. That’s it; CD38 be damned. I'm going to get well.


That entire week I felt amazing. Following chemo, I should have been exhausted. Usually, it took two weeks and a transfusion to rebound. But five days after chemo, I went outside and shoveled snow. A week later, I had another biopsy. The cancer had retreated. My journey had begun.



About the Author


Elizabeth Castronovo has lived with cancer for 22 years. Through tears, laughter, and writing, she clings to the thread of sanity. She maintains a daily sense of awe while taking long walks around the lakes with her dog. She lives in Minneapolis with her family.




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