COURTESY OF TERI CETTINA
This is what a journey into the world of off-label cancer treatment looks like.
By Teri CettinaJan
In September 2018, the pain in my ribs and back erupted almost overnight. I ignored it at first, sure that I had done too many abdominal exercises at the gym. When the pain persisted for a few weeks, I went to my doctor. She was a bit concerned, but all my blood and urine tests came back normal.
Two months later, the pain intensified and started waking me at night. I made an appointment with a physical therapist. Within 10 minutes of examining me, a shadow came over the therapist’s face. “I don’t want to alarm you, but this pain is not muscular-skeletal,” she told me. “You need to get a CT scan. Today.”
Later that day—the Wednesday before Thanksgiving—my husband Greg and I sat in our local hospital’s emergency department, waiting for scan results. When the ED doctor returned to my room, her tone was serious. “We found something we totally didn’t expect,” she said. “There is a suspicious mass on your pancreas that looks like cancer. I’m so, so sorry.”
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A chill shivered down my entire body. From my experience as a health writer, I already knew that pancreatic was one of the deadliest types of cancer I could have.
Somehow, my brain immediately switched to medical reporter mode and I asked questions. I must have been in shock, but I managed to take extra-meticulous notes, almost as if my neatly written words let me take some control over the information I had just heard. When I look back at those pages now, I barely recognize my own handwriting.
What is pancreatic cancer?
Pancreatic cancer is the third deadliest cancer in the United States. Around three in four patients die within a year of being diagnosed. And what makes this cancer especially sneaky is that its early symptoms are so vague: Abdominal or back aches. A little stomach discomfort. Some bloating. Stuff you might feel if you ate too much at dinner. Nothing you would take seriously at all.
In addition, most common blood tests don’t detect pancreatic cancer. By the time the cancer is discovered, the tumor has usually grown quite large. It may also have spread outside the pancreas, to the liver, lungs or, more rarely, abdominal fluid that may have collected due to the cancer. This cancer is quick moving and deadly.
In my case, the pancreatic tumor was about the size of a golf ball, but had not yet spread. However, it was wrapped so tightly around several aortic and liver-related blood vessels that they were almost completely blocked. Removing the tumor surgically was next to impossible. My only option was aggressive chemotherapy. It might extend my life, but it was not expected to cure me.
Our shared future was dissolving in front of my eyes.
But I understood none of this on the night before Thanksgiving. All I knew was that my life was forever changed. I felt that our daughters, ages 17 and 21, were still too young to lose their mother without it leaving a permanent scar. My husband and I had been married 29 years and were as close as we’d ever been. Now our shared future was dissolving in front of my eyes.
At 3 a.m. on Thanksgiving morning, I got up, unable to sleep. I padded quietly downstairs to our dining room and set the table for dinner with our extended family. I folded napkins and laid out silverware and plates. I set out bowls for mashed potatoes, stuffing, gravy and vegetables and tucked tiny yellow sticky notes into each dish so I’d remember which was which.
Then I gave up and dissolved onto the cool, hardwood floor. I lay down flat, my face touching the wood, and began to pray. “Please, God, give me time. Give me time to be with my daughters and Greg. Please give me more time.”
This is what it feels like to be diagnosed with cancer
Until you actually experience it, you cannot possibly know how you’ll handle the news that you might be dying. My first reaction was, quite strangely, relief. I can let up now. I don’t have to work so hard at this thing called life, because it’s almost over, I thought to myself.
I had not realized until my diagnosis how utterly exhausted I was. I’d spent the past decade dealing with the stress of caring for both of my aging parents (now deceased), my husband’s recent job loss, maintaining my own freelance writing business and worrying over various issues related to my daughters’ health and education…