When my husband told me that Alex Trebek was diagnosed with Step 4 pancreatic cancer, I felt like he had said that one of our close friends was in deadly danger. We often looked at "Jeopardy!" After dinner when our daughters were young, and now my teenager gets the chance to beat me. His announcement destroyed me, not only because I admired him, but because it took back all the feelings from my own diagnosis five years ago. On a November day in 2013, I locked myself in my bathroom and started to suck and hoped 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 uncertain results. On that day, however, I faced something much more frightening: my own mortality. Unlike many newly diagnosed cancer patients, I was afraid. I needed comfort from others who had been there. So I did what everyone does today ̵ 1; I went online in search of survivors' stories. I arose a while when I found some – people who were full of life and hope – until I learned that everyone had died. It's about pancreatic cancer. It forces you to confront the real possibility of dying. And in my case they die young. While most women wonder what to do for dinner, or if they can juggle jobs and matters and still get their children into sports practice, I had to see if I would…
When my husband told me that Alex Trebek was diagnosed with Step 4 pancreatic cancer, I felt like he had said that one of our close friends was in deadly danger. We often looked at “Jeopardy!” After dinner when our daughters were young, and now my teenager gets the chance to beat me. His announcement destroyed me, not only because I admired him, but because it took back all the feelings from my own diagnosis five years ago.
On a November day in 2013, I locked myself in my bathroom and started to suck and hoped 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 uncertain results.
On that day, however, I faced something much more frightening: my own mortality. Unlike many newly diagnosed cancer patients, I was afraid. I needed comfort from others who had been there. So I did what everyone does today ̵
1; I went online in search of survivors’ stories. I arose a while when I found some – people who were full of life and hope – until I learned that everyone had died.
It’s about pancreatic cancer. It forces you to confront the real possibility of dying. And in my case they die young. While most women wonder what to do for dinner, or if they can juggle jobs and matters and still get their children into sports practice, I had to see if I would see my daughters dressed in their proms, or train from high school and Leave for college. I even found that I would start scouting for other husband candidates for my husband Steve, so he would not be alone 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. Survivors are small – probably the most famous among them is the Supreme Court Justice Ruth Bader Ginsburg – but we do exist. Five years later I can finally say that I am one of them.
Tests, Operation, Fear
For years, I was the healthiest person I knew. I ate a healthy diet, do not drink, smoke or use illegal drugs. I ran marathons and ultra marathons, some as long as 100 miles. I lifted weights and went to yoga courses. I volunteer at my daughter’s school and for the local roads. I took care of my children to train and walk on our dogs.
But in a few weeks I went from running 100 miles at a time to use a hiker to circle my hospital floor.
My trial began in September 2013. I had a little trouble getting deep breaths – an uneasy symptom for an ultrasound – so I made a time for a physical one. My primary care physician ordered a breast and abdominal CT scan. We quickly dismissed the breathing issue after the radiologist had found what looked like a “cyst” on the pancreas.
My primary care worker, usually happy and calm, was uncharacteristically serious while we talked about the possibilities, my anxiety grew when he spoke. A few weeks later, I underwent an MRI and endoscopic ultrasound. It was actually a tumor, but the consensus was that it was probably benign. Still, it had “troubled properties” and needed to come out.
On November 18, 2013, I was hospitalized for five days for an open distal pancreatectomy. I chose the date so that it would not interfere with the family’s birthdays – my older daughter, my father’s and my husband’s. The surgeon cuts from my breast to my navel, removes the middle of the pancreas, my spleen and many lymph nodes. When I woke up I couldn’t move. I had drains 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 operation I discovered how serious it was. One of the nurses pointed out the unusual patterns of stitches on my belly.
“I’ve never seen a belly so sought,” she said, unwilling to remove bandages before the surgeon arrived. He came in and explained. “I put it that way if I had to go in again.”
What? What does it mean? Go back in? Why? I shook to think about the causes. Fortunately, it never came to it.
The first night after the operation, my husband took the girls to me. I was very heavily medicated, but happy to see them. I assumed they would be sure to see me, but they didn’t say much and didn’t stay long. Steve told me later they started crying in the elevator, stressed on how sick and delicate I saw.
My husband missed the surgeon’s explanation of the pathological report and thought everything was fine. When the doctor left the room, he logged in and said, “Well, that’s good news.” Confused, I replied, “Did you miss the part where he said it was cancer?” The smile disappeared. In the coming months, I had to explain many things to my husband, which I believe was in the form of denial. He refused to read anything about pancreatic cancer, too scared.
Ironically, I broke the news to my father on his 72th birthday. He and my mother were out shopping, and his reaction was calm, probably because he didn’t want to share bad news with her in public. I feared that Peyton and Riley, our daughters, told me. Parents should protect their children from the world’s bad news, as long as they can. I didn’t want to be the reason why they no longer felt safe. I don’t remember what I said, but I remember Riley’s answer. Quietly for a moment my older daughter said, “There is no God.”
Chemo and Isolation
I left the hospital on my husband’s birthday and knew that I would soon face 18 rounds of chemotherapy. I had mixed feelings about this after the oncologist told me that studies showed that patients on chemo got an extra six weeks of life. Not surprisingly, this succeeded in comforting me.
I began to feel that pancreatic cancer patients were among the forgotten, almost all died. Before I started chemo, I was looking for a support group at the hospital. They had none for pancreatic cancer. Why not? I asked. The answer: it was never enough survivors to start one. It was my first introduction to the isolation that followed.
I started chemo in January 2014. The side effects are cumulative, so as time goes by, you feel more acute, mostly nausea and fatigue. I had always been so tough – running ultra marathons expose you to much pain – but through chemotherapy I learned that it was not always possible – and that I needed to be milder on myself.
In April, Steve and I met Rich, who was treated for late stage breast cancer. He was the first pancreatic cancer patient we had ever met. My husband – the one who refused to read anything about the disease – was blind to meeting Rich, who died several months later. Steve suddenly realized that he could look at our future.
Family Ties and Recovery
Conditions change when you suddenly measure time in weeks and months, rather than years. I was longing for more time with Steve, hurting what would happen to him without me. He refused to talk about it, but I know it was in his mind. He later told me that he was worried: “What should I do with Peyton? I would need to move closer to your parents for help.” We developed a new level of intimacy. Now we slept packed in each other’s arms every night, as if it were unwilling to let go.
I wanted to make sure I taught my children so much of life’s important lessons as I could. Riley was 16, with prom coming up, and college graduation not so far away. Peyton was 10, not yet in high school, too young to lose her mother. I wanted to be the one who talked to them about relationships and careers. I was not willing to leave it to anyone. The first year after my diagnosis was all I wanted to do spending time with my family and friends. Getting sick confirmed my belief that the people I loved were the ones that were doing the most.
Over the next two years, I was worried and stressed at every medical follow-up, even though I felt better with every good report. Then I had a horror, an enlarged lymph node in celiac plexus, the area near the pancreas where a group of larger blood vessels converges. They thought it could be a metastasis It was hell that waited six weeks for the biopsy results. It was not cancerous, but my sense of security took a real dive for a very long time.
While nothing is ever safe with pancreatic cancer, I became happy. My tumor was found early. Still, I suffer from occasional attacks of survivors’ debt. Why am I still here when so many others are not? As a result, I feel guilty of those who left in front of me. I am writing a blog so that no one recently diagnosed will feel alone. I raise money for pancreatic cancer. I also had to prove that my body was back, so in June 2015 I ran – and ended – the 100-million Bryce Canyon Ultra Marathon.
I have felt a lot of fear over the past five years, even though my sense of imminent judgment is diminishing every year. In November of November my doctor cleaned me and said I didn’t have to come back. It was exciting to tell my husband and my daughters – the older one now a college junior, the younger a college degree in high school. I recently celebrated my own milestone birthday: 50.
But they are not the only ones who need to know this. I will probably not forget how I felt when my trial began, the loneliness and the profound sense of hopelessness that overwhelmed me. I don’t want anyone else to manage this disease to feel so scared and isolated as I did that afternoon five years ago when I cried in my bathroom.
So please, if you need me, look for me. I’m still here.