When my husband told me Alex Trebek was diagnosed with Stage 4 pancreatic cancer, I felt as if he had told me one of our close friends was in mortal danger. We often watched “Jeopardy!” after dinner when our daughters were young, and now my teenager revels in the opportunity to beat me.
His announcement devastated me, not only because I admire him but because it brought back all the feelings from my own diagnosis five years ago.
One November day in 2013, I locked myself in my bathroom and started to sob, hoping my husband and daughters would not hear me. I was 44, recently diagnosed with pancreatic cancer and in the midst of a grueling treatment regimen with an uncertain outcome.
On that day, however, I was facing something far more frightening: my own mortality. Not unlike many newly diagnosed cancer patients, I was scared. I needed comfort from others who had been there. So I did what everybody does these days — I went online in search of survivors’ stories. I was momentarily buoyed when I found some — people full of life and hope — until I learned that all of them had since died.
That’s the thing about pancreatic cancer. It forces you to confront the real possibility of dying. And in my case, dying young. While most women my age are wondering what to make for dinner, or whether they can juggle work and errands and still get their kids to sports practices, I was obsessing over whether I would see my daughters dressed up for their proms, or graduate from high school and leave for college. I even found myself thinking I should start scouting around for second-wife candidates for my husband, Steve, so he wouldn’t be lonely after I was gone.
Pancreatic cancer is a very isolating disease with an abysmally low survival rate, 8.5 percent, according to the National Cancer Institute. It was even lower — 5 percent — when I was diagnosed. The community of survivors is small — probably the most well-known among them is Supreme Court Justice Ruth Bader Ginsburg — but we exist. Five years later, I at last can say that I am one of them.
For years, I was the healthiest person I knew. I ate a healthy diet and didn’t drink, smoke or use illegal drugs. I ran marathons and ultramarathons, some as long as 100 miles. I lifted weights and went to yoga classes. I volunteered at my daughters’ school and for the local Road Runners Club. I shuttled my kids to practices and walked our dogs.
Yet in a few scant weeks, I went from running 100 miles at a time to using a walker to circle my hospital floor.
My ordeal began in September 2013. I had been having a little trouble taking a deep breath — a troubling symptom for an ultra-runner — so I made an appointment for a physical. My primary care physician ordered a chest and abdominal CT scan. We quickly dismissed the breathing issue after the radiologist found what looked like a “cyst” on my pancreas.
My primary care doctor, usually cheerful and calm, was uncharacteristically serious while we talked about the possibilities, my anxiety growing as he spoke. A few weeks later, I underwent an MRI and endoscopic ultrasound. It was, indeed, a tumor, but the consensus was that it probably was benign. Nevertheless, it had “worrisome features” and needed to come out.
On Nov. 18, 2013, I was hospitalized for five days for an open distal pancreatectomy. I chose the date so it would not interfere with family birthdays — my older daughter’s, my father’s and my husband’s. The surgeon cut from my chest to my navel, removing half my pancreas, my spleen and numerous lymph nodes. When I woke up, I couldn’t move. I had drains emerging from my sides, a catheter to collect urine and sleeves around my calves to prevent blood clots.
The consensus was wrong. It was malignant, and I was numb.
A few days after the surgery, I discovered how serious it was. One of the nurses remarked on the unusual patterns of stitches on my abdomen.
“I have never seen an abdomen stitched up that way,” she said, reluctant to remove the bandages before the surgeon arrived. He came in and explained. “I stitched it that way in case I had to go back in.”
What? What does that mean? Go back in? Why? I shuddered to think of the reasons. Fortunately, it never came to that.
The first night after surgery, my husband brought the girls to visit me. I was very heavily medicated but thrilled to see them. I assumed they would be reassured upon seeing me, but they didn’t say much and didn’t stay long. Steve told me later they started crying in the elevator, stressed at how sick and fragile I looked.
My husband misheard the surgeon’s explanation of the pathology report, thinking that all was well. When the doctor left the room, he smiled and said, “Well that’s good news.” Confused, I replied, “Did you miss the part where he said it was cancer?” The smile disappeared. During the coming months, I had to explain many things to my husband, who I think was in a form of denial. He refused to read anything about pancreatic cancer, too afraid.
Ironically, I broke the news to my father on his 72nd birthday. He and my mom were out shopping, and his reaction was calm, probably because he didn’t want to share bad news with her in public. I dreaded telling Peyton and Riley, our daughters. Parents are supposed to protect their children from the world’s bad news, for as long as they can. I didn’t want to be the reason they no longer felt safe. I don’t remember what I said, but I do remember Riley’s response. Silent for a moment, my older daughter then said, “There is no God.”
I left the hospital on my husband’s birthday, knowing I would soon face 18 rounds of chemotherapy. I had mixed feelings about this after the oncologist told me that studies had shown patients on chemo got an extra six weeks of life. Not surprisingly, this failed to comfort me.
I began to feel as if pancreatic cancer patients were among the forgotten because almost everyone died. Before starting chemo, I looked for a support group at the hospital. It had none for pancreatic cancer. Why not? I asked. The answer: There were never enough survivors to start one. That was my first introduction to the isolation that followed.
I started chemo in January 2014. The side effects are cumulative, so as time goes on, you feel them more acutely, mostly nausea and fatigue. I’d always been so tough — running ultramarathons exposes you to a lot of pain — but getting through chemotherapy taught me it wasn’t always possible — and that I needed to be gentler on myself.
In April, Steve and I met Rich, who was being treated for late-stage pancreatic cancer. He was the first pancreatic cancer patient either of us had actually met. My husband — the one who refused to read anything about the disease — was blindsided upon meeting Rich, who died several months later. Steve suddenly realized he could be looking at our future.
Relationships change when you’re suddenly measuring time in weeks and months, rather than years. I found myself yearning for more time with Steve, aching at what would happen to him without me. He refused to talk about it, but I know it was in his thoughts. He told me later that he worried: “What would I do with Peyton? I would have to move closer to your parents for help.” We developed a new level of intimacy. Now we slept wrapped in each other’s arms every night, as if reluctant to let go.
I wanted to make sure I taught my kids as much of life’s important lessons while I could. Riley was 16, with prom coming up and high school graduation not all that far off. Peyton was 10, not yet in middle school, too young to lose her mother. I wanted to be the one to talk to them about relationships and careers. I wasn’t willing to hand it off to anyone else. That first year after my diagnosis, all I wanted to do was spend time with my family and closest friends. Getting sick confirmed my belief that the people I loved were what mattered the most.
For the next two years, I was anxious and stressed at every medical follow-up, although I felt better with each good report. Then I had a scare, an enlarged lymph node in the celiac plexus, the area near the pancreas where a group of major blood vessels converge. They thought it might be a metastasis. It was hell waiting six weeks for the biopsy results. It wasn’t cancerous, but my sense of security took a real nose dive for a very long time.
While nothing is ever certain with pancreatic cancer, I turned out to be lucky. My tumor was found early. Still, I suffer occasional bouts of survivors’ guilt. Why am I still here when so many others are not? As a result, I feel indebted to those who left before me. I write a blog so that no one newly diagnosed will feel alone. I raise money for pancreatic cancer research. I also had to prove my body was back, so in June 2015, I ran — and finished — the 100-mile Bryce Canyon Ultra Marathon.
I’ve felt plenty of fear these past five years, although my sense of impending doom lessens with each year. Last November, my doctor cleared me and told me I didn’t need to come back. It was thrilling to tell my husband and my daughters — the older one now a college junior, the younger one a sophomore in high school. I recently celebrated a milestone birthday of my own: 50.
But they aren’t the only ones who need to know this. I am not likely to forget how I felt when my ordeal began, the loneliness and pervasive sense of hopelessness that overwhelmed me. I don’t want anyone else coping with this disease to feel as frightened and isolated as I did on that afternoon five years ago when I wept in my bathroom.
So, please, if you need me, look for me. I am still here.
Tonia Smith is a freelance writer who lives in Colorado Springs. Her blog is: mypancreasranaway.wordpress.com/