Whatever I thought I meant when I said, "Give it to me straight, doc," I wasn't prepared when the radiologist answered, "I thought we would be talking about saving your breast, but now we're looking at whether we can save your life."
Her pronouncement followed a brief mammogram and ultrasound. They were brief because I only have one breast left to examine. A new tumor had been found in it. The radiologist debated aloud whether my cancer was stage IV—sometimes called "advanced" cancer. There is no cure for it.
I couldn't get my mind around the words she was using: "foreshortened life," "chronic," "stage IV." I needed a filter. I needed music. I often ask doctors if I can use music to help me through situations like these. But where were my ear buds? Were they in my computer bag? And where had I put my phone?
I'd had a mastectomy ten years ago, but the radiologist clarified that the new cancer wasn't the same "barely-stage-one" variety I'd been diagnosed with back then. The two cancers had nothing to do with each other. They were fed by different kinds of hormones, "which—sorry to say," she said, "makes you particularly unlucky." That cancer ten years ago had been caught early and was easy to contain and excise. This new strain was aggressive, reproducing fast. It was definitely an emergency. This was early December of 2013, and already I was thinking that the coming Christmas might be my last. She scheduled an urgent PET scan to get more detailed images of my liver.
I had the strange sensation of my internal world—synapses, blood rhythms, identity, aspirations—shifting in response to the gravitational pull of a new and precarious orbit. Since the first round of cancer in 2004, I had warned friends and family that if it recurred I would probably refuse traditional treatment. I hadn't quite decided what I would do instead. Go to Germany like Farrah Fawcett for treatments unproven or unreplicated, and thus restricted in the United States? Visit a retreat center somewhere in the Himalayas or Marin County to meditate, get daily colonics, and go keto? I had reached a reactive tipping point somewhere during those ten years where reading about cancer in magazines or listening to cancer treatment ads on the radio irritated me, like constant nagging.
All arguments, all evidence, all arrogance about my own opinions built up over the last ten years dissolved in that pivotal instant when tumors returned, when I was lying on the examining table in the radiologist's office being given a provisional late-stage cancer diagnosis. My first thought—when faced with the possibility of impending death—wasn't “Oh, yeah, I'm going to refuse treatment.” My first thought was about a promise to stick around that I'd made to my stepdaughter.
Over the singing of Mary J. Blige, I announced aloud to the radiologist, "I'll do whatever it takes. Chemo. Radiation. Surgery. Losing my hair..." She stopped talking. I was yelling in her ear.
You would think hair is of no consequence, but mine was part of my persona—big, red, and unruly. I liked to hide in the mess of it. I had nearly the same hairstyle for 25 years. The thought of losing it was akin to a loss of self. But losing that was only the beginning.
That was the beginning of six and a half months of weekly chemo doses. The treatments felt as if essential electrolytes like sodium and potassium were being leached out of my cells and replaced with a repulsive antifungal formula—or something equally toxic—that cleansed while compromising the integrity of whatever it touched.
Throughout chemotherapy treatment, I kept going to work. As a psychologist who manages a psychiatric outpatient program, I facilitate groups of people struggling with a variety of mental health concerns, including suicidal urges. I was desperate to live, unlike many of them, but it would be too simple to say we were coming from opposite directions. In truth, we shared common risks.
And I faced squarely the ways I had been holding myself back from life and from self-expression. At my job, I would often ask patients to consider reconstructing stories they told about themselves. I began to understand that illness or compromised health has its own reconstructive process. Illness unmakes us and remakes us regardless of our best-laid plans. I had the choice of assenting or resisting. Accepting help has made it easier to let go of things I once fiercely defended: my righteous indignation, my precious fears, my pride, and my hair.
I circled around barbershops for weeks before I finally walked into an anonymous one on University Avenue. I took off my blue knit hat. The stylist asked if I'd thought about shaving my head for a long time. She didn't notice the bald patches. She didn't assume I had cancer. It was a relief: the stylist's indifference, the locks of hair falling to the floor. It turned out that my head was a pretty decent shape. No bumps. I put the hat back on, paid her, and walked away. I didn't have any emotion until I got back behind the wheel of my car. Then I felt incredibly sad; I drove around the block several times, listening to Bob Dylan, not knowing where to go next.
There was a threshold day during chemo where all food and beverages, even water, began tasting like metal and cold potatoes. At that point, there didn't seem to be a future, only an endless repetition of rogue cells infiltrating tissues and organs, along with the steady fading away of passion. That was a dark and a clarifying place, a distillation that evolved into a feeling that approached purity. My body was broken down to the point that it needed to restart again. I was hairless. I didn't sweat. Even the idea of sex seemed exhausting. All of my adamant beliefs crumbled.
I became more keenly aware of how many people were wrangling with serious health issues, and how isolating illness can be when you are living in it. The urge to belong and make meanings abides in us. Metaphors are great connectivity devices that viscerally convey, even if we don't yet comprehend, big emotional experiences. Illness awakens symbols in us by which we make sense of ourselves, and our experiences. The closest I can get to an explanation of what I mean here is by describing the culminating crisis of my stage IV cancer.
It happened in late April, four months after the radiologist suggested that my life needed saving. It was my second scheduled scan; the first one had shown slow, steady reduction in tumors—nothing dramatic. This second CT scan showed that something odd was growing in my lungs.
In order to figure out the lung mystery, I was admitted to the hospital for a series of tests, including a needle biopsy of my lungs. This procedure involves having a needle inserted in a lung to extract a tissue sample, and the main risk of it is that the lung might get punctured and collapse. Various medical professionals estimated the risk of a puncture was anywhere from one percent to 30 percent. All of them agreed that the pain from a punctured lung was "excruciating." I took all precautions, including accepting the hospital chaplain's offer to pray over me. He held my hand. It was awkward.
The day of that lung biopsy played out like a rock opera of linked metaphors. First, it felt like a MASH episode. It was a bustling afternoon at the surgery center. I waited an eternal hour on a rolling transport bed. Then a tidy, bespectacled surgeon gave me a pep talk about the CT-scan-guided needle-biopsy procedure. He assured me collapsed lungs were rare. He asked me to sign an authorization. I got his permission to listen to my iPod during surgery.
The sedating nurse said I'd soon start to feel the calming effect of sedatives. In the meantime, she and her cohort tried to squeeze my contorted body through a narrow CT scanner, which would snap digital images of my lungs to help guide the surgeon's sampling needle. He needed to extract a small sample of tissue from one of the inflamed areas in my lung. My shoulders scraped the sides of the scanner. "Raise your arms. We're going to put bracelets on you," another nurse said. "Bracelets" was a euphemism to describe Velcro straps that bound my arms above my head. It was an uncomfortable posture; the sedatives hadn't kicked in.
Then the surgeon reappeared. I noticed he had some kind of dried gunk on his glasses. It looked like interstitial fluid mixed with blood. Through the vague gauze of insufficient sedatives, I felt a rising dread. The surgeon sat down behind me. He explained that he would numb my back at the place where he planned to insert the needle. It would be simple. Right before the needle went into my lung, an image of the French artist Odilon Redon's painting of St. Sebastian flashed across my mind, unbidden. The painting depicts the patron saint of gays and the afflicted with his arms tied by rope to a tree branch high above his head. The background is smoky blue. There's a wound in his side. I thought, "That's weird. Maybe this is a bad day for this thing."
At the same time, the surgeon said something indecipherable and a dull, intrusive object—a straw, I later learned—was shoved between my ribs. Apparently, the surgeon had just punctured my lung. That would explain the pain. My lung collapsed. The straw was inserted to drain the lung cavity so that the lung could gradually re-inflate again. That process would take a few days. It was so painful I found it hard to breathe.
The nurses rolled me back to the waiting room, where they left me. Oddly, in spite of the intense pain, I wasn't angry. In retrospect, I think the linked associations of the experience—the MASH episode, the painting of St. Sebastian, and Nick Drake, whom I'd been listening to all the while—were doing a better job than the minimal sedatives to make the pain tolerable.
When I returned to my room upstairs, there was more commotion. The lung drain had been set up wrong. I wasn't getting much air. The nurses couldn't give me pain meds until the air problem was fixed. I had the strange sensation then and later that the collapsed lung was... I don't know... a kind of cathartic experience. I know that is counterintuitive.
Fortunately, the surgeon had extracted enough tissue to send to a lab. It was hard not to jump to worst-case scenarios, but I tried to control myself. The oncology pulmonologist didn't have results yet when I got to his office the following Monday afternoon. He stepped out to call the pathologist, then returned with the news. The stuff growing in my lungs—"organizing pneumonia," he called it—was an allergic reaction to a chemotherapy agent. It was definitive: There was no cancer in my lungs. I dropped my water bottle on the floor and cried.
If the scans and tests were all true, that meant I was in remission.
What I call remission, my oncologist calls "no evidence of disease." We're both talking about a reprieve. There's no guarantee that cancer won't return. In fact, once cancer metastasizes through lymph nodes to other organs, it's more likely to follow a similar pattern again. Fifteen years ago (before antibodies like Herceptin existed), I would have been dead by now. Fifteen years from now, chemotherapy may be archaic. Vaccines and even more precisely targeted antibodies are plausible. In the future, there will also be other, better words for chronic states of being not exactly ill, but not exactly well.
