At the end of 2016 I moved, alone, to a cottage on Whidbey Island in Washington, while my husband remained in Illinois. We’d grown apart over 34 years of marriage, and neither of us knew if we’d ever want to live together again. A few months later I was asked to have a biopsy after my usual mammogram and was dismayed to learn I had breast cancer. Concerning both my marital situation and my medical condition, I was adrift in a sea of not knowing.
As my first round of cancer treatments approached, my husband came to visit and took me to Seattle for the insertion of a port into my chest under my left clavicle. Due to drug protocols at the time, I was scheduled for chemotherapy and targeted therapy first and a mastectomy later. Knowing I would have a full year of IV treatments, I chose the port to minimize pain and damage to my veins. The surgery went well, though the site was sore for days and I had to sleep on my back, even after my skin healed over the doorbell-sized device.
I was adrift in a sea of not knowing.
My spouse departed on the last day of January. It may seem strange to send him away when I was about to start chemotherapy, but it made perfect sense to me. In our old life together in the Chicago area, when I was ill with the flu or other ailment, my partner rarely thought to check on me or bring me a cup of tea, even if I requested it. He didn’t like being asked to do something, as if I’m telling him what to do or, as he called it, “trying to control” him. I figured I’d recover more quickly without the added burden of trying to be heard by someone who didn’t want to be nurturing—or didn’t know how.
I was protective of the pocket of peace I’d established.
I was protective of the pocket of peace I’d established. As my husband prepared to return to Illinois, I felt a mixture of relief for myself and tenderness toward my spouse, knowing we would miss each other while two thousand miles apart. In the parking lot of Ken’s Korner, we sat quietly until the SeaTac shuttle arrived to take him to the airport. Then my husband quickly gathered his carry-on bag, gave me a kiss, and departed. When he was back at our Huntley home, he called to report that Cassie, our loyal German Shepherd, was glad to see him and was sticking close by his side.
I arranged with a local friend, Carla, to be with me for my February 1st treatments. She and I took an early ferry and had a chance to catch up with each other during the drive into Seattle. She grew up near my HMO’s medical center and knew all the back roads. In the hospital room, she kept me company, quietly conversing at times and letting me rest at times. Carla liked to tell me, “You’re so brave, Barbara.” I would come to hear that phrase from many people over the course of my treatment and it was never a comfort to me, because I knew I was not brave. I was doing what I had to do to stay alive. Inside, I was kicking and screaming about this turn of events—and what I was required to do to my body. I wondered if people lauded my bravery as a way of distancing themselves from cancer and the fears conjured up by that word, and, if so, I didn’t blame them one bit.
Inside, I was kicking and screaming about this turn of events—and what I was required to do to my body.
The port worked well as a direct entry point to my circulatory system, with only a slight pinprick sensation at 7:30 a.m. when a nurse collected my blood. The morning count of my WBC was a healthy 11, meaning 11,000 white blood cells per microliter of blood. Taxotere and carboplatin kill patients’ white blood cells, a critical part of the immune system, so the challenge would be for my bone marrow to generate new ones in time for my next treatment.
At 9 a.m. my Taxotere infusions began, to be followed by carboplatin and then targeted therapies of Herceptin and Perjeta. My nurse for the day stopped by the room regularly to check on me. There’s a chance of adverse reactions to the powerful chemo drugs, and, with Herceptin, there’s a chance of heart damage. In fact, when the nurse began running Herceptin into my body, I felt a cold flutter inside my chest. “Oh, that feels weird,” I said. The strange sensation went away, so we continued with the infusion. I lay in a narrow hospital bed with the IV bag hanging on a pole next to me. With all the fluids going through me, I made occasional trips to the nearby bathroom, rolling my IV pole along with me.
When the nurse began running Herceptin into my body, I felt a cold flutter inside my chest.
After seven hours of infusions, Carla took me home. I had a quiet supper in my house, relieved to have successfully completed my initiation into cancer world. I called my neighbor, Trudy, and we made plans for the next day to visit Deception Pass State Park at the north end of Whidbey. My oncology team told me I would have a few days before side effects kicked in and I wanted to enjoy those days while I could, preferably out in nature.
I sat by my butsudan and meditated on the theme of gratitude, thinking of Carla, the oncology nurses, and all those who helped me through my first day of treatments. My most tearful gratitude, for some reason, was for the workers on the Washington State Ferry that took me between Clinton and Mukilteo, the busiest of the many ferry routes in Puget Sound. I now had a medical pass, issued by my doctor. That meant I could go around the line of cars waiting to board the ferry, which saved me time and stress. Sometimes, especially in summer, cars were in line for hours. On previous trips, I’d witnessed drivers’ hostile reactions when unknowing tourists butted in line with their cars, so I made sure to hold up my medical pass in the window as we went around the waiting vehicles.
Carla and I arrived before sunrise and were given priority boarding, no questions asked. A man in a yellow safety vest gestured us to the front of the line. We parked in the first spot on the main deck, just behind the motorcycles, with a brightening view of sea and sky. I felt humbled, like a bird with an injured wing returned to her nest. Such kindness makes a big difference when you’re going through tough times.
The day after treatment, Trudy and I drove to the state park and began our hike on the north shore of Whidbey Island, zipping our jackets up to our chins to keep out the wind. As we walked on the beach, we saw the green girders of Deception Pass Bridge soaring eighteen stories above us. Cars and trucks looked tiny as they flowed across the stately bridge. Trudy, a creative soul, savored the sights and sounds, finding purple mussel shells and rocks of many hues tumbling in the surf. Feeling the gravelly sand give way under my shoes as I strode along, I felt confident and mostly healthy, though I knew that could change at any moment.
When I returned home, my husband called from Illinois to check on me. I said I was hanging in there so far. Though I wasn’t yet sharing my medical status on social media, I kept about a dozen people in the loop by sending email updates about my treatment. My lifelong friend, Amy, often called or texted with messages of encouragement. I relied on the love and care coming my way as part of my survival plan. When people offered to pray for me, I said yes, please do! It made sense to accept all the good energy that was offered and, also, to send prayers of support to those I knew who were struggling, including fellow cancer patients.
I relied on the love and care coming my way as part of my survival plan.
On the fourth day, my mouth and lips were sore and red, like they were sunburnt. It was too painful to drink my usual sparkly water. Even a fruit smoothie stung my tongue. My oncology team had suggested a remedy called “magic mouthwash,” so I picked up a bottle at the drugstore. When I gargled the garish, pink liquid, all it did was numb my mouth for a few minutes. I was more interested in something genuinely healing.
It was a major undertaking to make a sandwich to go with the soup my friend Raya made for me. Staring at my refrigerator door, I read the magnetic sign stuck there, supplied by my HMO: Talk with your doctor about any side effects or symptoms that come up. Side effect management is an important part of comprehensive cancer care. Common side effects include: Fatigue, Nausea, Hair loss, Diarrhea or constipation, Mouth sores, Pain, Rash and other skin changes, Neuropathy (nerve damage). I would experience every one of those during the coming months, but it was my lack of energy that worried me after that first chemotherapy treatment. I dialed the helpline at my HMO to try to find out if my fatigue was normal or not. A nurse there suggested that, if my condition persisted, I go to a doctor or the emergency room to be examined. This was one of many bits of generic advice offered to me when I called the 24-hour consulting line throughout my treatment, most of it ineffective at helping me find relief.
My daughter Emily, who lived nearby, came over after work to assist me. We had a light supper and then she sat by my bed while I rested. When she left, she asked me to call her if my side effects got any worse. “I’ll do that,” I promised, still expecting to manage my symptoms on my own.
I was not a napper. I rarely slept during the day. So, when I could hardly rise from my bed the next morning, my worrywart tendency kicked in and I assumed I was dying. This corpse-like spell made me feel glued to my sheets. Later in the day when I shuffled downstairs, I collapsed on the sofa. I was prepared to be weak after chemotherapy, but not so unwell that I didn’t recognize myself.
I was prepared to be weak after chemotherapy, but not so unwell that I didn’t recognize myself.
Feeling moribund, I called my daughter. “Hi, Emily. I might need your help,” I said.
“What’s going on, Mom? How are you doing today?”
“Not so good, hon,” I said, my voice catching in my throat. “I… I don’t have the stamina for this,” I stammered. “I’m so tired, I don’t know what to do.”
“Oh, no,” Emily said with concern.
“You know how I said that Herceptin could damage my heart? I feel so weak, I’m worried my heart is giving out.”
“You think it’s the Herceptin affecting you?”
“I don’t know. Maybe I’m having a reaction to it. Do you think I should go to the emergency room in Coupeville?” Emily came right away to get me.
At the Whidbey hospital, I put on a gown and had my blood drawn. My white blood cell count was three, a low number to be expected after chemotherapy. My daughter sat by my hospital bed, her dark, curly hair pulled back in a ponytail and her watchful eyes on me. Emily’s down-to-earth presence was reassuring. I remembered her focused approach to equestrian competition during college. She memorized the course, noting the height of each jump, and then calmly rode her horse through it. Now she was accompanying me through a challenging course of my own.
I had a chest x-ray. Then a nurse pulled aside my gown and stuck sticky pads to my torso and ankles for an electrocardiogram. When she said, “Everything looks normal,” I was relieved that my heart was doing fine. Then what was sapping my energy so profoundly?
Taxotere and carboplatin are poisons. My body was coping the best it could.
That’s when I began to understand that my symptoms were not heart failure but simply the way chemotherapy affected me. The powerful, cancer-killing medications sucked the life right out of me. Ten years ago, I had seen a newspaper photo of a Russian man in London poisoned by polonium-210 for political reasons. Remembering that image of Alexander Litvinenko’s head inert on the hospital pillow, no glint of vitality in his eyes, I recognized my condition. Taxotere and carboplatin are poisons. My body was coping the best it could.
Emily took me home from the hospital and helped me prepare brown rice and vegetables before returning to her farm. I was worn down to a shred of my former self. I had cherished the solitude of my house so much for processing my emotions that I expected to need that solitude again during treatments. But dealing with my physical side effects was proving to be overwhelming.
I called my husband in Illinois. On the verge of tears, I told him what a rough time I was having. “I thought I could handle this on my own, but it is way harder than I expected.”
He was quiet for a minute, which I knew, after decades of living with him, was normal. Still, I had a sinking feeling that he wasn’t understanding—or even caring about—my situation. Then, in his methodical way, he showed me he was listening. “Sounds like you have the worst side effects four or five days after treatment. When is your next chemo treatment?”
“February 22,” I said.
“I’ll make a reservation for a February 26 flight from Chicago to Seattle. I’ll take the shuttle to Whidbey Island and Emily can pick me up at the shuttle stop. So, I’ll be there when you start to feel sick again.”
“I’d appreciate it,” I said. I had mixed feelings about relying on my spouse or being helpless around him, given our precarious relationship. Could I be myself, my real self, which was my new normal since I moved to Whidbey, when he was around? He had rarely showed empathy for me in the past, so I had low expectations for what he could do for me as my side effects hit. Yet, all that paled in light of our long-term relationship—and the intensity of my suffering. He may not have been able to intuit my every need, but he was still my guy, my partner in life, and I needed him nearby on those days I was dealing with the worst side effects. I had Emily and helpful neighbors around, but having someone as close as a spouse to stay with me when I could barely function would be the most comforting arrangement.
From then on, my husband made a point of being with me whenever I needed him during my debilitating cancer journey. As he and I were changing, our marriage was changing, too. Crises reveal the character of people as well as relationships. Dealing with something as difficult as cancer, partnerships can easily unravel. Or, if we can manage it, we weave new connections as we call on inner and outer resources previously unknown.
Crises reveal the character of people as well as relationships.
That evening I sat on the sofa with a cup of herb tea nearby, trying to regain some perspective and control of my situation. I wrote in my journal, When I get the stuffing knocked out of me, as with chemotherapy, do I get to choose what I put back in? What I take back and claim?
I’ve always liked being around trees and I remembered reading in Science News that the cancer treatment, docetaxel, is made from yew trees. I also remembered that I’d passed the article to our babysitter at that time to give to her mom who was newly diagnosed with breast cancer. Her mother was touched by my gesture of support, which I’d come to now experience myself as a cancer patient, as people went out of their way to be kind. As I’d felt with the ferry crew and when my neighbors brought me supper, small mercies formed a cloud of love that carried me through each day.
Docetaxel is the generic name of my chemo drug, Taxotere, and is derived from poisonous leaves of European yew trees. (Taxol, a similar drug, comes from Pacific yews, found in my state of Washington.) A reliable and accurate assassin of cancer cells, Taxotere is much in demand. As part of a multibillion-dollar business, yew trees are now over-harvested, as they were in ancient times when their wood was prized for archers’ bows. When I traveled to Wales to explore my Welsh heritage, the only big yews I saw were in cemeteries of churchyards. I learned that the toxic trees were left there to discourage cows from grazing among the graves.
I decided to think of the yew trees and their poison as my helpers and friends
I decided to think of the yew trees and their poison as my helpers and friends, and to be grateful each time I had a cycle of chemotherapy. I also decided to ask my bone marrow to make plenty of new white blood cells.
Could my WBC bounce back from their low level? My oncologist, Dr. Chisolm, didn’t think so and recommended home injections of a prescription to stimulate my bone marrow following each round of chemotherapy. I was skeptical, thinking to myself that yes, I could have Emily come over and give me the shots. She does that for her farm animals. But I’d rather trust my own body than this new drug I saw hyped on TV commercials. One of my neighbors was taking the bone marrow stimulant along with her cancer treatments and she still ended up in the hospital with neutropenia, a condition of dangerously low WBC [neutrophil] levels. I turned down my doctor’s prescription, telling him I’d like to try chemo without it and see what happens. We’d know the results, either way, at the next pre-chemo blood draw.
As for other preparations, I purchased special socks and mittens that can be frozen and then worn during treatment. My goal was to minimize the flow of chemo drugs to my extremities. The colder an area is, the less flow of drugs via my circulatory system, and the less chance for neuropathy and degradation of my nails. In Europe, patients also used cold caps to minimize hair loss, but my HMO did not yet have the technology for that. Already, my brown hair was loosening its hold on my head and clogging my hairbrush. After I undressed for my shower, I took a photo of myself in the bathroom mirror so I could remember what my hair and my body used to look like.
“I told my blood cells to bounce back,” I said. “I guess they did.”
When I returned to my HMO for my second round of chemotherapy, the morning blood draw showed my white blood cell count. Dr. Chisolm looked at me a little wide-eyed and said, “It’s abnormal.” I expected him to say the levels were too low to allow me to proceed with chemotherapy that day, but instead he said, “Your white blood cell level is 14.7, which is abnormally high!” He was surprised.
With a smile, I patted my forearm in gratitude for my bone marrow. “I told my blood cells to bounce back,” I said. “I guess they did.”
Recovering from a heart attack, author and medical researcher Norman Cousins wrote, “I thought that I had a great heart and that it was doing everything—and more—that anyone could ask of it. Life has many prizes, not the least of which is having confidence in one’s physiological endowments and their responsiveness to one’s deepest needs.”1Cousins N. The Healing Heart. 1983. New York NY: Avon Books. p 88. I, too, chose to believe in myself. It was good to know that, even after the setback of a cancer diagnosis, I could find ways to trust my body again.
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