Published in February-March 2019
issue of Sactown Magazine
The Big Sick
It was Dec. 12, 2018. My husband Dave and I awaited another meeting with my oncologist on the third floor of UC San Francisco’s Helen Diller cancer center.
We were both experiencing “scanxiety,” a term cancer patients and their loved ones use to describe how they feel before new results come in from a CT scan; X-ray images often reveal life-changing developments—a timeline altered, dream aborted, life shortened. Though the news about my disease had been surprisingly positive in recent years, my husband and I still saw mortality around every corner.
After undergoing multiple surgeries and rounds of radiation and chemotherapy in the first year and a half of cancer, the disease had spread anyway and I was told I had only a short time to live. Though I’d responded well since then to immunotherapy and gene-based medicines, it had been five months since my last set of scans and several months with no treatment of any kind. So we sat waiting for the appointment with Dr. Alain Algazi—UCSF skin cancer specialist and research scientist—with the disquiet that comes from having heard bad news from doctors on many occasions.
Dr. Algazi entered the room all smiles and delivered the verdict: “You are cancer-free,” he said. The radiologist report stated I’d had a “complete response” to treatment. Dave and I looked at each other in disbelief—full remission is something we never dared think we’d achieve since Stage IV cancer entered our lives. Dr. Algazi pulled up the evidence on screen and reviewed it for us with his usual cool. No cancer to be found.
“Live your life,” he said. We wept.
had somehow been spared from the worst fate of a disease that last year took the lives of nine million people worldwide. (In a paradox I can’t wrap my head around, I still carry a diagnosis of metastatic cancer although I no longer have detectable disease in my body.) I’m unimaginably fortunate to be here today and I can put a name on the reason why.
How did I beat terminal cancer? Immunotherapy—a set of medicines that help the body’s natural defenses recognize and attack cancer.
Of course there were other factors assisting too. Good health care and a great doctor. Access to clinical trials and cutting-edge treatments. A strong advocate in Dave and a supportive tribe of family members and friends. A journalist’s sensibility to help guide me through choices I never thought I’d face.
But it’s immunotherapy I owe my life to. As we celebrated New Year’s 2019 in the context of my new “cancer-free” designation, Dave and I reflected with wonder on the roller-coaster ride we’d taken with a disease diagnosed exactly five years ago this winter.
IIt was a Tuesday evening in January 2014 when the doctor called to tell me the grape-size mass I’d found under the skin to the side of my right ear was not benign as had been suspected. The biopsy “does show cancer,” she told me carefully. The words didn’t sink in fully even after I told Dave. We had only the faintest sense that our world had been hijacked forever.
My first surgery was a six-hour undertaking at the UCSF Medical Center at Mount Zion that involved slicing open the side of my face beside my right ear and 6 inches down my neck, removing lymph nodes that held cancer, then sewing me back up.
Afterward I holed up at home for weeks—sleeping, cocooning, binge-watching Friday Night Lights. Every few hours during the first days, Dave would drain what nurses call “the hand grenade”—a suction device fixed to my upper chest and connected to a clear tube that spit out post-op blood and pus from my wound. Soon I was approved for the chemotherapy and radiation to come.
A wonderful cohort of family members and friends plugged into my five-day-a-week, six-week treatment schedule by driving me from my home in Davis to the Mercy Cancer Center of Sacramento for radiation, then on to Woodland Healthcare for chemotherapy. The actor Michael Douglas, diagnosed with oral cancer in 2010, described the treatment process for head and neck cancer as “very accurately mapped to the seven cycles of hell.” It’s hard to disagree. Like most everyone else ever stricken with cancer above the neck, he too must have stomached the chemotherapy and been lain down by radiation technicians on a slab of metal, locked by bolts into a tight plastic mask and told to remain immobile while a linear accelerator directed high-energy beams of radiation at his cancer. Surviving the mask is a special honor for those of us who’ve been through it. My childhood friend Adriana in Los Angeles, who herself underwent radiation for brain cancer, created beautiful art out of the masks she and I wore to earn our badge of courage.
Dave became my hero and fierce advocate—taping medical appointments with his iPhone so we’d have an accurate record of the choices we faced, monitoring my long list of medications, advocating for me when I simply didn’t have any oomph. (I was able to take a four-month leave from my job as editor-at-large at the Sacramento News & Review, but he remained working throughout.) But food became awful and eating a misery. At one point I could only name three foods I could stand to put in my mouth (toast, applesauce, smoothies). My sister Katie from San Francisco became my guardian, with her weekly visits, compassionate company and creative solutions for my new dietary issues. She coaxed me into eating baked apples and concocted a “white” veggie lasagna that remains a favorite.
In the hospitals and clinics, I came to feel a growing solidarity with my fellow cancer patients. None of the American Cancer Society brochures mentioned the different world you enter once diagnosed with cancer. In her discerning essay “Illness as Metaphor,” Susan Sontag described the “night side of life”—a parallel universe that people slip into when they move from the kingdom of the well into that of the sick. Before my diagnosis, I hadn’t known this place existed. But during that first year of treatment I’d catch a glimpse of other inhabitants in the chemo infusion room or while waiting for my turn at the radiation table: the elderly woman in her purple hat, the young bureaucrat wearing a tie, the university student who arrived for his chemo alone in a taxi. I had friends and loved ones escorting me to and from the clinics, but many who arrived in cancer’s kingdom had come alone.
AAfter eight months of recovery, a CT scan found cancer in a different location so my already slim chances of beating the odds glided further out of reach. (Even before the disease spread, I discovered through my own research that I had only a five percent chance of surviving five years. Thanks to advances in treatment for this type of cancer, it’s hard to find such dire predictions on medical websites anymore.) I underwent another neck surgery and radiation to the other side of my head and neck. But after a spring respite, the summer brought another cheerless report—a scan that showed new tumors in my neck and under my right arm. My cancer—officially known as metastatic squamous cell carcinoma of the head and neck with unknown primary—had gone systemic. Doctors like to offer hope to patients, not devastate them. But like any reporter, I was all about getting to the truth so I pushed for a prognosis. A Stanford cancer specialist gave me six to nine months to live. (“But there are people who do a lot better,” he offered.) My surgeon told me, “months to a year.” In our first meeting, Dr. Algazi said, “The average is a yearish … but nobody’s average.”
So that was it. At age 58 I was told I was dying in a yearish.
As a lifelong journalist and founding editor in 1989 of the Sacramento News & Review, I had managed to engage in meaningful, creative work throughout my career. I’d met and married Dave, the love of my life and my best friend, and been blessed when it came to family and friends. But perhaps my luck had run out.
It seemed time to consider what to do with the time I had left. A cancer diagnosis inspires some people to make radical changes, but I wasn’t one of these since I basically cherished my life as it was. Others in my circumstance create bucket lists of the things they want to do before the end, like take a trip to Paris, see Hamilton on Broadway, spend a night alone with the aurora borealis. I respect the people who do this, but a checklist of endgame objectives just wasn’t for me.
Ultimately, I decided to focus on becoming more fully present in my own day-to-day life. Work and laughter. Music and movies. Daily morning walks along the Davis greenbelt, a path that winds for miles around our home. Frequent drives with Dave and our dog Scout in the early morning hours to view the sunrise in our mostly rural Yolo County. In fact, Scout—a shepherd mix Dave and I had adopted from the SPCA just before cancer hit—became our secret weapon against all the what-ifs. As animal lovers know, dogs live solely in the present, and Scout served as our comic relief—our four-legged rebuttal to cancer—with her joie de vivre, exuberance and antics.
We were told, “Don’t skip dessert,” so we didn’t. We also splurged with a bit of traveling—Dave arranged a cruise to Alaska in the summer, a trip to Hawaii in the spring and later, one to Utah’s gorgeous “red rock” parks—but mostly we stayed put. We took to organizing mini-reunions and gatherings with people of importance in our lives. In the summer of 2015, my sister and brothers and their clans joined for a Welsh Family Weekend in Monterey. About 20 of us checked into the same hotel and laughed, drank, feasted and enjoyed each other utterly. My beloved niece Natalie flew over from France, bringing her husband, young daughter and new baby boy. We sobbed quietly in each other’s arms as farewells were said, both knowing we’d likely never see each other again.
I decided to continue working at the Sacramento News & Review until I couldn’t anymore, since I took pleasure from the sense of purpose it provided and had good friends as employers. I wrote a few stories for the paper and began a national project, Letters to the Future, which had acclaimed writers, like Michael Pollan and Jane Smiley, and regular people writing letters to subsequent generations about what happened at the 2015 Paris climate talks.
My first public “coming out” about cancer took the form of an essay I wrote for the Los Angeles Times (that was also printed in SN&R), and in the weeks that followed, I received a tidal wave of comments and emails from friends, co-workers and thousands of strangers. Eventually I retired from the News & Review, but kept writing elsewhere about my cancer and our common mortality. Every time I published a new essay I’d hear from more people with their tales of cancer, death, dying … thoughts on what gives life meaning. Once you start listening, the stories are everywhere.
I was not unfamiliar with the subject of mortality. My mother died at the age of 45 when I was 10 years old and my brother Marty, a physician from Placerville, died at 56 from ALS, otherwise known as Lou Gehrig’s disease. Also, I’d written about the right-to-die issue as a journalist on many occasions. I had a general awareness of what the path to death from disease looks like and remain a resolute proponent of California’s End of Life Option Act that permits terminally ill patients to be prescribed aid-in-dying medication.
Though still meeting with doctors and hoping against the odds there might be a treatment course ahead that made sense, I felt my basic trajectory was unswerving. I was often asked if I feared death and I would answer that although I didn’t fear the actuality of death—“the end of everything”—I did fear the diminishment, dependency and suffering that comes with the process of dying. Ultimately, I decided not to spend too much of my remaining time pondering the existential fact of what was happening to me. I believe in the brilliance of the universe and accept the reality of life on Earth as nothing less than a miracle. But I knew my teeny, tiny piece of it all was coming to an end. I was simply hoping to live fully until death’s progress was underway and die with as much grace and humor as I could muster.
But then along came a surprise. Its name was immunotherapy.
II’d received excellent care thus far from skilled doctors, surgeons and nurses, but my fortunes shifted in July of 2015 when I first met Dr. Algazi. Born and raised in Davis, my new oncologist practiced what is called personalized medicine. Dave and I liked him immediately, with his intelligence, quirky sense of humor, knowledge of novel therapies and treatments in the relatively new field of immunotherapy, and philosophy that each patient presents with a unique set of considerations that must be creatively managed. We began commuting regularly for treatment to UCSF’s cancer center at Mount Zion in San Francisco, where he and his team were based.
I quickly became aware that I was a terminal patient at a time of sweeping change in the field of cancer research. In fact, Siddhartha Mukherjee, oncologist and author of the Pulitzer Prize-winning The Emperor of All Maladies, wrote in 2016 that cancer care had entered a “mapless moment” for doctors and patients.
I was to become one of the beneficiaries of this moment.
As I came to understand, the immune system is a network of T cells designed biochemically to defend the body against viruses, bacteria and other foreign trespassers. Cancer, a disease caused by mutant genes that drive abnormal growth in cells, is one of those invaders and is often brilliantly devious in its ability to hide from the immune system or block its ability to fight. Immunotherapy—which is any type of treatment that stimulates the immune system to fight cancer and other diseases—often uses what are called “checkpoint inhibitors” to help T cells “see” the cancer as the threat it really is and attack it full throttle.
The new drugs—there are several that had already been FDA approved for use in treating particular cancers—had already led to long remissions, especially in patients with melanoma and tumors of the lungs and kidneys. It didn’t work for all patients with those cancers and it didn’t work for many other types of cancer. Still, given the long history of promised cures for cancer that didn’t pan out, immunotherapy gave oncologists new optimism. “It’s like working for NASA in the 1960s,” Dr. Algazi told the PBS NewsHour about how it feels to be treating cancer patients during the era of immunotherapy. “That sense of discovery, that sense that you’re changing the world, or at least there while the world is changing. And you’re able to really help.”
Unlike chemotherapy and other standard approaches, immunotherapy tends to produce fewer crushing side effects, although a small percentage of patients develop autoimmune disorders where a too-revved-up immune system attacks healthy organs. The poster child for immunotherapy is former President Jimmy Carter, who was given a terminal diagnosis when melanoma metastasized to his liver and brain in August of 2015. He underwent immunotherapy and his cancer made an astonishing retreat around three months later.
Pretty soon my cancer was withdrawing too.
Under the care of Dr. Algazi, I’d entered a clinical trial with an experimental gene therapy regimen. That September, I began getting injections of the genetic material pIL-12 with electroporation (yes, that’s electric shock) on a six-week cycle. The treatment was designed to make my tumors more responsive to immunotherapy. (My next-door neighbor, a geneticist, dubbed me a human GMO.) Four months later, despite it not being FDA approved for my type of cancer, I got the green light to add infusions of Keytruda (pembrolizumab), the immunotherapy drug taken by the former president. (I received the “pembro” in a two-hour session every third week on the fifth floor of Mount Zion hospital.)
In late May of 2016, Dr. Algazi arrived unexpectedly in the infusion room where I was being prepped for treatment. As usual, Dave and I were deep into scanxiety because we hadn’t yet heard the results of a recent MRI. But he stood before us and stunned us with the news: “I just talked to the radiologist,” he said. “The neck tumor has vanished.”
We were floored. Though permanently stiffened with scar tissue from radiation and marred by surgery, my neck was suddenly deemed cancer-free. Along with the disappearance of the “large neck mass” (3.3 x 4.0 centimeters) that had been leaning against my carotid artery (thereby threatening to kill me quickly in a “bleed out”), a golf-ball-size tumor in my right axilla (under my right arm) was now nowhere to be found. A lesion on my spleen was missing. Though tumors were still growing in my left axilla, my life expectancy had been stretched in an indeterminable way. I was officially a “partial responder” to immunotherapy.
Suddenly a miraculous gift—unanticipated time of unknown duration—had been granted to me. I began hitting milestones I thought I’d miss. I didn’t expect to reach the age of 60, but made it there with time to spare. With Dave’s 60th birthday close to mine, we celebrated by throwing a giant party with music, flowers, art and homemade tamales at the Davis Arts Center that September. Loved ones arrived from all quarters. A friend created a message table where people wrote funny and poignant answers to questions like, “What’s your motto?” (“Carpe diem” won in a landslide.) Songs were sung, speeches were given—the occasion seemed lit with gratitude, mine above all.
Dave and I were elated to celebrate another Christmas and New Year’s—my favorite holidays with all their sparkly lights and warm gatherings. We stood first in line for a Star Trek sequel I thought I wouldn’t make it to see. A friend took me to an unforgettable Paul McCartney concert on opening night of the new Golden 1 Center, a spectacular coliseum I felt sure I’d never live long enough to enter.
All this time I’d been practicing what is called “integrative medicine”—awareness that treatment should take the whole person into account and consider physical, mental, emotional and spiritual influences as working together alongside traditional medicine. And while I knew my current “partial responder” status was attributable to the power of science and immunotherapy, I left no stone unturned. I exercised daily, practiced guided imagery (a mind-body exercise in which I listened to tapes that inspired mental images of my immune system doing battle with the cancer) and mindfulness meditation (especially helpful to claustrophobes like me while trapped in MRI machines), and ate a healthy diet full of fruits and vegetables that I bought from the Davis Food Co-op or local farmers’ market. (I still do all these things.)
One day I got an email from Merrill Schwerin, a producer at the PBS NewsHour, who wanted to do a segment based on essays I’d written for the LA Times—one about facing death, the next about why I wasn’t dead yet. The resulting segment on immunotherapy—featuring me, Dr. Algazi and a panel of experts—aired in February of 2017 and caused another tidal wave of responses and connections between me and many whose lives had been impacted by cancer.
I penned a few follow-up essays for the Times and others during this period—more than partly to prove to myself I could still participate in the broader realm of what was happening in the world. As someone who acutely knew the importance of good health care coverage and had a whopper of a pre-existing condition, I wrote about the importance of defeating a proposal then in the U.S. Senate to massively overhaul the health care system. The move would have endangered coverage for 15 million Americans like me, sending us back to pre-Obamacare days when providers could cut insurance for the sick or sharply increase their rates. In a rare 2017 victory for the forces of sanity, the proposal didn’t pass out of the Senate.
While in this personal limbo state as a “partial responder,” I agreed to donate some of my cancer to science. Many of the breakthroughs that benefited me had come courtesy of mice, tenacious researchers and the evidence-based, peer-reviewed work of medical science, so I was happy to volunteer. I underwent an extra biopsy (six plunges with a long, hollow needle under my left arm) to allow researchers to duplicate my cancer cells in a lab and implant them into mice for study. Dave and I dubbed the resulting population of rodents “Melinda Mice” and hoped they might assist in some way. When I asked Dr. Algazi later what happened to “my” population of mice, he grinned and said, “These things take a long time.”
But despite all the positive developments, two stubborn tumors—one now walnut sized—remained under my left arm. These were not responding to Keytruda and did not react to another early phase clinical trial I had begun. Still, officially experiencing what’s called “disease progression,” I returned to infusions of Keytruda, but this time had an autoimmune response that netted me a few trips to the emergency room with ulcerative colitis, whose cure (high-dose steroids) caused side effects like no-sleep nights and a lovely facial swelling my brother Greg designated “moon pie face.” Mostly, the autoimmune reaction was bad news because it meant I was no longer a good candidate for infusions of immunotherapy.
A late summer round of Stereotactic Body Radiation Therapy (high-dose radiation therapy) was determined to be a good option for going after the remaining tumors. The SBRT came coupled with infusions of Cetuximab—a chemo-like drug that makes one’s face and chest break out in an acne-like rash and creates painful fissures on the hands and feet. All of the above explains why Dave and I dubbed it “bummer summer.” We tried to make the best of what we knew might be a negative turning of the tide. We had no idea we were about to experience another breakthrough.
IIt was September of 2017 when, at Dr. Algazi’s behest, I was approved for treatment with T-Vec (talimogene laherparepvec) as a new way to attack what was left of the cancer. (T-Vec was approved in 2015 for patients with advanced melanoma but was—and still is—considered experimental for people with my type of cancer.) I began getting injections—administered every other week by the assiduous UCSF nurse practitioner Michael Buljan—of a benign virus that carried a genetic code into my tumors to kill cancer cells and stimulate my immune system. Though designed to provoke a systemic response, this treatment was “localized” to the tumor so it did not put me at high risk for another autoimmune reaction. T-Vec—delivered to my cancer by Buljan for nearly a year—is why my tumors became filled with dead cells instead of diseased ones.
Last September, Dr. Algazi ordered the remaining masses biopsied and the lab results came back with a stunning “no evidence of carcinoma.” By the end of the month, a surgeon had removed them through a 5-inch incision under my arm. The pathology from surgery (a lab examination of the tissue) came back and the tumors indeed had become cancer-free.
A few days later came the news that a pair of scientists—Dr. James Allison and Dr. Tasuku Honjo—won the Nobel Prize in medicine for their groundbreaking work in immunotherapy. I promptly hunted down email addresses for both men and sent them congratulations with the subject line “thank you for saving my life.” I told them I’d been given a terminal diagnosis but was still alive and thriving because I’d gained access to immunotherapy. “I know I am only one of many thousands whose lives you rescued, thanks to your brilliant work on T cells and overall dedication to science,” I wrote.
Later that day I was elated to receive a beautifully modest response from Dr. Allison: “Dear Melinda, thank you. Your message is worth more than any prize.”
Since I hadn’t had complete body scans since July, however, Dave and I didn’t know what to expect from the December radiology results. Five months is a long time in cancer world and despite the good news we’d had with the axilla, we assumed the disease might have come roaring back elsewhere. That’s when Dr. Algazi surprised us by reporting that scans of my neck, chest, abdomen and pelvis showed all clear—I was in remission and cancer-free. He explained I still was diagnosed as having metastatic cancer and would need to return every three or four months for scans for three years, then less frequently as time went on. He was optimistic that even if the cancer were to reappear in my body, the odds of survival were good, since my immune system had shown itself to be responsive.
A few days later, I received the written report from the radiologist: “62 y.o. woman with Stage IV squamous cell carcinoma s/p clinical trial, immunotherapy and most recently T-Vec injections to left axillary tumors, now s/p resection of L axilla tumors showing complete response.” I wept all over again.
I know how lucky I am. And I admit to having survivor’s guilt. During my five-year battle with cancer, half a dozen people I knew succumbed to the disease. Dave has two former colleagues from two different workplaces who passed away recently after receiving cancer diagnoses similar to mine. Each year, some 600,000 people die of cancer in America alone and so many types of cancer have yet to respond to immunotherapy. It’s heartbreaking to me that many patients are not aware (or their doctors are not) of the potential benefits of the new medicines or don’t have insurance that allows for options that were available to me.
But make no mistake: We live in a transformative time for treating cancer.
In the years ahead, researchers will continue to solve the puzzle that each cancer presents and find remedies that will work for many more. (As Mukherjee wrote, “All cancers are alike but they are alike in a unique way.”) In fact, there are more than 1,000 clinical trials in immunotherapy underway at research institutions across the globe today. The future will see more immune-based drugs getting federally approved, making them more likely to be covered by health insurance. The costs—which can be substantial (currently upwards of $100,000)—will come down. More patients will ask their doctors for immunotherapy options and many, many cancer stories will have different outcomes. The hope over the next decade is that cancer will become a treatable chronic condition (like diabetes) as opposed to a random killer that enters the lives of 17 million new people around the world every year.
Meanwhile, a surprising number of Stage IV people like me are still here, thanks to immunotherapy. Some of us face various chronic health challenges as a result of treatment. But we surprise ourselves by being alive. “Guess what?” we tell ourselves each morning, “We’re still here!”
I continue to try to live my life steeped in the awareness I’ve gained facing mortality on a short clock. I never want to forget the lessons I’ve learned about the beauty and fragility of life. I continue to prioritize who and what matters to me most and am deeply grateful to be alive and loved. But thanks to the unlikely journey I’ve been on with cancer, I’ve accepted an additional mission: Share my story, preach the gospel of immunotherapy and help spread hope.