By some accounts, I shouldn’t be alive to write this. In January 2018 I was lounging at the edge of the ocean on a dreamy beach vacation, staring up at a lovely Mexican moon and counting my lucky stars: a beautiful marriage, a rewarding job, close friends, and a loving family. But just one month later, back home in cold, snowy Minnesota, my phone rang.
A shaky voice from my doctor’s office explained that the lump in my breast was not breast cancer (Yay!) . . . but it was malignant (What?). She sounded nervous, and I knew my sweet life was about to turn sour.
After initial pathology reports were inconclusive, I was diagnosed with a rare, aggressive “cancer of unknown origin,” which meant no one knew where it had started before it landed in my breast. My disease was a mystery without a standard treatment plan, so I had no choice but to agree to surgery, radiation, and a powerful dose of chemotherapy that attacks many different cancer types, desperately hoping it would destroy mine.
It slowed the progression and gave me precious time to think. I was able to process my feelings: shock, grief, anger, fear — so much fear — and eventually, thankfully, I started to feel focused and determined.
Before my diagnosis, I knew very little about cancer. It’s a drag to think about, and I figured I’d deal with it only if it picked me or someone I loved. When my number was called, I had two choices: Take charge or go along for the ride. I’m an investigator by nature, so I chose the former.
At a follow-up visit, my oncologist told me that the cancer had spread to my lungs. Then she added that there was an “encouraging” treatment available that could possibly extend my life by “maybe seven months.” Seven months. To live. I told my husband, Chris, that I couldn’t accept that. No one even knew what type of cancer I had — how could the prognosis be so certain? She didn’t know me. I would be an exception.
At first, my instinct was to go it alone — I wanted to be strong and protect my loved ones from anxiety and grief. But I soon learned that it takes just as much courage to ask for support in times of distress.
I needed help figuring out how to live without constant fear of the future, and I had read that strong social connections can actually slow cancer progression. So I let people in — and they responded in the most loving ways.
Chris became my caretaker. When he shaved the remaining patches of my hair, he said he wasn’t crying with me only because he was too in awe of my beautiful, perfectly round head. My best friends, family, and coworkers routinely checked in, lifted my spirits, organized a “meal train” to keep me nourished, and laughed and cried with me in my bed when I was too weak to tackle the stairs.
They confided that they were just as scared as I was, and they let me talk about the possibility of death, never commanding me to “fight hard” or “win the battle,” as if gumption alone was the panacea.
When I was first diagnosed, my dear friend David texted me the name of a cancer specialist out East who was a good friend of his parents. At the time, I tucked it away — I didn’t want to be a bother, and I wanted to trust I was on the right path with my current care team.
When the cancer metastasized and became stage IV, David reminded me about the connection and sent me the doctor’s direct phone number. All I had to do was touch the screen on my phone to get a second opinion. I had nothing to lose.
Donald Kufe, MD, deputy director of the Dana-Farber Cancer Institute in Boston, answered on the first ring. We spoke for an hour. I told him my story and he listened intently.
Toward the end of our conversation, I asked the question I wasn’t sure I wanted him to answer: “Do you think there’s any hope for me?” His reply was the catalyst I needed: “You should have all the hope in the world.”
Just before I called Kufe, a lab report had revealed that I have a gene mutation called BRAF V600E, which is commonly found in people with melanoma. This information was the turning point in the course of my care.
Kufe told me about advancements in targeted-therapy drugs and immunotherapy used to treat cancers caused by my gene mutation. Since this wasn’t his specialty, he introduced me to a colleague at Massachusetts General Hospital, one of the world’s top experts on BRAF gene mutations.
Less than a week later I was in Boston seeing Keith Flaherty, MD, who had led the clinical trials of the targeted therapy I was about to begin.
The drugs he prescribed are each a type of kinase inhibitor. Kinases are enzymes that change how protein molecules regulate cell growth. The pills block these mutations from signaling cells to divide out of control and become tumors.
The success rates of this nascent drug therapy I’m currently on are yet to be determined, but many people who participated in pioneering clinical trials continue to survive progression-free to this day.
It’s very likely my cancer will eventually progress, though, and I will switch to immunotherapy, which should kick my immune system into overdrive to attack any new tumors.
The side effects of these drugs can be mysterious and frightening. And though my care team gave me advice on how to deal with them, one of the best sources of information I found was a Facebook support group for stage IV cancer patients. It was invaluable to have access to people who knew firsthand what I was experiencing.
For the first few months, I lurked, secretly cheering their scans that proclaimed NED (no evidence of disease, in cancer lingo) and mourning their tumor recurrences. Then one morning, I woke up with my arms covered in hard red lumps that confounded my oncologist at the Mayo Clinic in Rochester, Minn., where I had transferred my care to be closer to home.
My new online friends took one look at the picture I posted and assured me that they were a type of inflammation located in the fatty layers of skin that, while painful, was nothing to worry about.
After my care team confirmed that theory, I became a more frequent contributor to the page. I can’t visit every day while trying to maintain a sense of normalcy, but I try to check in regularly to see if I can offer advice or encouragement.
As soon as I was able, I also headed back to the gym. David is a personal trainer, and he customized strength-training workouts to get me back on my feet after chemo had wrecked me. The psychological rewards of being able to lift myself out of a chair or walk several miles were nearly equal to the obvious physical benefits.
Once I got my appetite back, I returned to a healthy diet of organic whole foods, limited added sugar, and minimal processed stuff.
I also read books about alternative and complementary practices that might support my treatments.
Another big part of my recovery process was learning to practice mindfulness. In the early stages, I hardly slept. I needed a way to rest my brain as well as my body.
My best friend, Lydia, recognized my anxiety and gifted me a beautiful, wood-carved box where I could deposit little slips of paper containing my handwritten worries so I needn’t think of them anymore.
Another dear friend, a different David, and his wife, Marny, gave me a set of Tibetan singing bowls, known to induce deep meditative states, clear the mind, and inhibit stress and pain. I felt the deep tonal resonance of the bowl as much as I heard it when Chris circled the bronze vessel with a padded mallet as it rested on my belly.
I also downloaded meditation apps and practiced deep-breathing techniques whenever stress would begin to overwhelm me.
I’m still kickin’, as they say. It has been 20 months since my diagnosis. I’ve been on targeted therapy for almost 18 months, and I’m closing in on that elusive NED status. My latest scan showed that my lung tumors have gone from “too many to count” to two, and my doctor thinks those could just be scar tissue. My condition is currently considered NEAD, or no evidence of active disease.
Even though this all sounds incredible — even miraculous — I understand it probably isn’t yet over. I still experience “scanxiety” before every trimonthly appointment. I warn myself to be prepared for anything, and I’m still apprehensive that this reprieve I’m relishing will end too soon.
Meanwhile, I remain hopeful and resolute.
My days now either fly by or drag on, depending on how I’m feeling. Time stands still when my joints ache, my legs and feet cramp, my vision blurs, or those painful lumps return, and I can’t wait for my next dose of medication to help calm the inflammation.
I’ve learned to schedule meet-ups and events thoughtfully, knowing that if I’m going to be active for a few hours, I’ll need time to rest and recharge. I’m better about saying no when necessary, even though I’ve never said yes to life as much as I do now.
But when I feel good — when I feel normal — time flies. It seems I barely have enough hours to connect with friends, ride my scooter, walk my dog, or work, let alone exercise, stock the kitchen with healthy food, and get enough sleep.
What I always make time for now is reflection. I’m surprised by how often I’ve felt lucky for the lessons that cancer has taught me: to fully appreciate the myriad kindnesses shown me; to remember that petty annoyances don’t matter; to trust in the human body’s incredible capacity to heal; to share my experience and coping strategies with those newly diagnosed with life-threatening illnesses; to love, and allow myself to be loved.
For the unforeseeable future, I am an exception.