Stage IV Breast Cancer: Endurance

stage 4 breast cancer learning endurance
I had difficulty letting go of the fantasy of being the lucky one, the exception to the usual Stage IV breast cancer trajectory.
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My partner’s, golden rule has long been, “Life is not a spectator sport.”  She ‘s not bragging or trying to coerce me to exercise more when she says that line, but I suppose Frith is trying to encourage me not to lose faith to keep facing late stage breast cancer. 

I had known Frith for over ten years, and she’d always been a supportive friend, though we had lost touch in recent years. Our lives had gone in much different directions.

 So when Frith invited me to a book launch party for a mutual, dear friend at her house, I most looked forward to catching up with Frith.  I was the first one to arrive at her house.  She had just turned 50 a few weeks prior to the party she told me.  I asked her how she celebrated? 

Most people would have a party, or travel, or at least eat a fine meal at a favorite restaurant.  Frith ran a fifty-one mile course along the McKenzie River.

When we reconnected at the book launch party, I was working on an academic psychology book about using music to build meaningful connections with psychiatric patients. I thought she would be bored with the topic, but she was intrigued.

We started going to films and literary events. We talked for hours over food and cocktails about plot and style, life experiences and creativity. Somewhere along the way we started dating.  I never would have imagined our two worldviews and ways of living in the world blending like counterpoint in a Baroque symphony. I also felt lucky to be accepted and welcomed by Frith’s teenage daughter, Mariel, who is equally as dynamic as her mom.

Frith and I languished in eight sweet months of a blossoming romance. We took a salsa dance class together, marrying my love of music with another of Frith’s passions— ballroom dance.

Things were going so well. When I went for my “annual” exam (I had missed the previous year) a couple of weeks before Christmas, the nurse practitioner and I talked about psychologically approaching our fifties as a new life chapter. Little did I know what that might mean. The doctor asked about a lump in my left breast. I told her that I had fibrotic spots that appeared and resolved. She said no. This was different. She sent me for a series of scans. They confirmed active breast cancer but the extent of the disease wasn’t yet clear.

I was struck by the preciousness of life on Christmas Day, cherishing the clear, yearning bell of Karen Carpenter’s voice singing “Have Yourself A Merry Little Christmas” while staring at the blinking colored lights that spiraled around the Xmas tree.  I worried that the weight of a serious illness might break my new and tender relationship.

The day after Christmas, Frith and I sat in an exam room with a messy haired Turkish oncologist, whom I immediately loved because of his rambling stories. He pulled up scans of my liver, put one hand under his chin, and sighed, “Well, I don’t like this.” My stomach sunk. There were 50-60 tumors in my liver, he said, in addition to tumors in my breast, my stomach cavity, bones, and lymph nodes. Frith had been taking notes on her laptop.  She reached for my hand.  I had retreated into a cave of numbness, but she coaxed me back into the room.

There was a brief second for us to catch our breath, before the oncologist pronounced a Stage IV diagnosis. I noticed the word Urgent stamped in red across my chart. 

“So, let’s talk about fighting it,” Frith said.  

She had once told me that when climbing if she gets scared leading run-out sections of rock, where there are neither bolts nor natural protection for dozens of yards, and falling is not an option, she wills herself into the microscopy of the present moment and the one next move. Never look down, she said. Look up to where you need to go.

The oncologist was hopeful.  My cancer was HER2 positive, which meant that it responded well to Her-2 antibodies that interfere with cancer cell proliferation. Because I was 53, and otherwise in good health, I would likely tolerate and benefit from intensive chemotherapy. Of course, he needed me to understand that Stage IV cancer was a chronic condition that could be managed but never cured.  Truth be told, I couldn’t wrap my mind around the concept of “chronic” at that time. I needed to believe my case might be an exception.

So we began. Frith told me how important it had been to have friends and family pace her during the latter miles of the grueling McKenzie River run. We launched a Caring Bridge site to keep all of our combined friends and family on board.  On the last morning of the year I had a porta-catheter surgically inserted in my chest. The oncologist and I debated about starting chemo immediately or waiting a few days. He didn’t want to push me. I hemmed and hawed. I wanted to stall out. Take one full long breath and exhale slowly.

“The two of you are driving me nuts,” Frith said, “Cancer isn’t going to wait.”

I started chemo on New Year’s Eve with a cocktail of Carboplatin, Taxatere, and Herceptin. I received 20 weekly doses of chemo infusions, on Friday afternoons so I could recuperate on weekends and keep working my full-time job managing an outpatient psychiatric program.  I lost my hair, my fingernails, my palate, and over 13 pounds that I didn’t need to lose. Everything—even water—tasted like metal. My nose bled. My digestive system crashed. My skin broke out in eczema and other curious rashes.  On the other hand, I gained new insight and appreciation for the side effects and internal struggles my mental health patients wrangled with. We talked together about coping with fear, and exhaustion, and despair, and how to collect small beautiful moments to sustain ourselves through dark times.

In February, Frith rallied our pantheon of friends to move the two of us, and Frith’s daughter, into a rental house.  I thought we were rushing things, merging households after 10 months.  But it was such a solid comfort to share intimate space. Plus, my dog was pleased to become Frith’s loyal running companion on mountain trails.

The last month of chemo treatment was a roller coaster.  Something was growing in my lungs.  My oncologist recommended a biopsy to further investigate. The procedure backfired, resulting in a collapsed lung.  We braced ourselves for bad news, expecting a whole new slough of toxic chemo agents. Instead the lung specialist pronounced that I was having an allergic reaction caused by one of the drugs.  We also discovered that the constellation of tumors scattered throughout my body had notably shrunk. No active cancer was metabolizing in my cells.  The oncologist didn’t say remission. He said “No evidence of disease (NED).” I hugged Frith, hugged the oncologist, dropped my water bottle on the floor, and cried.

In my mind, I translated NED to mean we had beaten cancer.  By winning this round, we had crested the most ominous ridge. We could descend and carry on carefully from that moment forward. I had really altered my lifestyle after looking at those first liver scans. I cut out alcohol pretty much entirely and liked the accompanying clarity.  Thanks to Frith’s culinary skills and long-distance running dietary regimens, I had vastly improved my eating habits.  More home cooked meals and vitamins gleaned from whole foods.  More kale.  More turmeric.

Seven months after the NED diagnosis, my portacath line got infected and was surgically removed. I was grateful the oncologist didn’t authorize replacement. I added that fact to the collective evidence that the cancer crisis chapter was closing.  I knew I would be on antibody maintenance every three weeks for the rest of my life. That didn’t faze me. Antibodies feel much less toxic than chemotherapy.

I started seeing a new oncologist in the spring of 2015, a researcher conducting clinical trials with immunizations for Stage IV patients with NED, like me.  She requested scan updates, reviewed them cautiously, and put me back on chemo. She wasn’t sure for how long. Four months? Six months?  I felt waves of anger.  Why now? I was finally feeling healthy again.  My hair had grown back. Fingernails were healing.  I had energy, appetite. It was only one chemotherapy agent, she said. The main side effects would be hair loss, exhaustion, and maybe nausea.

I had difficulty letting go of the fantasy of being the lucky one, the exception to the usual Stage IV breast cancer trajectory.  Embarking on a new round of chemo meant owning my chronic health condition. Stage IV Breast Cancer wasn’t going to be a single long trek toward a peak, followed by a triumphant descent. Chronic cancer was a series of climbs and descents, with unmapped terrain ahead.

I turned toward Frith. She had been my unwavering partner on the journey so far.  She was still on board. We were terrified.  I noticed again, how she leaned into her challenges with body and mind. 

Frith could teach me about endurance. She had been teaching me all along. If Stage IV cancer were going to be a succession of challenges, then I needed to develop an endurance-based attitude toward the unknown.  Each new trial would be its own discreet event, which I would need to face with full, focused and curious attention.

I call this brand of Frith-style endurance “mindfulness on steroids.”  I used it again—a couple of years later—when I started brain radiation treatment for 15 tumors spread throughout my brain. Radiation seemed ominous until it began. 

I stayed open and curious. I asked the radiation technicians to play David Bowie.  I thought of Frith scaling a sheer granite wall and realized I would make it through radiation treatment, too. When the staccato pulsing intro of “Under Pressure” started, I gathered all the strength in my core, lifted my eyes and looked up to the bright green-blue light and said, “yes.”

I am still saying yes. I’m still climbing, one step at a time, to where I need to go.

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