Listen to Your Body: Cystic Fibrosis and Cancer
For 34 years, I’ve choked down close to 50 pills a day, as part of a daily regimen to manage cystic fibrosis. But one bitter pill I wasn’t prepared to swallow was hearing the words, “You have Stage IV colon cancer.”
I think about the doctor’s words now as I grieve the life I almost got to have, one that seems like a distant dream. The nightmare call came less than two years after I started TriKafta, a life-changing drug that turned a death sentence into a chronic illness, managed with medications and treatments.
For the first time in a long time, I had hope. Hope for a future of a “healthy” life. I had big dreams and a lot of things I wanted to accomplish. Now those things are on hold, as my future entails so much doubt. But I still cling to the hope that things will get better—and I’m committed to helping other cystic fibrosis survivors keep from swallowing the same bitter pill.
The American Cancer Society says more than 104,000 people were diagnosed with colorectal cancer this year. Known as the “silent cancer,” it remains the third-leading cause of death in the U.S. among the general population, partly because many patients report experiencing few or no symptoms.
There are about 70,000 people worldwide living with cystic fibrosis (CF), and we’re five to ten times more likely to get diagnosed with colorectal cancer.
What makes us especially vulnerable is that symptoms can and often do mimic issues that CF survivors experience daily. More research is needed to determine exactly why we’re at such elevated risk for the disease, but it’s believed to be linked to a mutation in the cystic fibrosis transmembrane conductance regulator gene. To combat this silent disease, screenings are recommended for the general population at 45 and 40 for those with CF. That’s too late and must change. Screenings can prevent about 60 percent of colorectal cancer deaths.
I’m 34 years old, and I had few symptoms and no known family history. Colon cancer grows slowly, and it’s possible it’s been in me for years.
I sensed something was wrong over the summer; it was intuition more than it was symptoms. I had minor digestive issues, which I thought were caused by something I ate.
They persisted, and I second-guessed myself. TriKafta helped tip me off, because it worked so well that I was confused by the changes in my digestive system. In June I found a mass in my groin, about the size of a dime.
Doctors ordered an ultrasound, which was inconclusive. It took weeks to get an appointment with a general surgeon, and in that time, the lump grew to the size of a walnut.
I went to my CF team for help. They found a bowel blockage, a common condition for those with cystic fibrosis known as Distal Intestinal Obstruction Syndrome, or DIOS. We hoped a colon cleanse would clear the blockage, but deep down I knew it was something more serious. I implored the doctors for help, and was eventually admitted to the hospital to undergo a CAT scan.
The tumor didn’t initially show up on the scan because my bowels were inflamed from the cleanse. Four more days went by before the doctors biopsied the groin mass, something I asked for the second day. At first, the doctors seemed to dismiss the idea, thinking I was too young.
A week after the biopsy came the bad news. I burst into tears. My CF team contacted an oncologist and arranged for a next-day appointment. A PET scan revealed the cancer spread to other organs, including my liver, ovaries and lymph nodes.
My liver has more than 14 tumors or lesions, which was heartbreaking to hear. I feel like I’m just cancer, not Anna anymore. I’ve been transformed back into that sick, little vulnerable girl who spent many nights curled up in a hospital bed, unsure of her future.
I’ve been involved in local politics for years, serving as a supervisor of my local township government board and aspired to one day run for Congress. As I grew more financially stable in my 30s, I planned to travel across the globe. I wanted to go to Australia and hold a koala bear, and take in the sun-dripped islands of Costa Rica, but all that has been put on pause.
I started off on immunotherapy, hoping that would do the trick, but my cancer did not respond to those treatments. I’ve since begun chemotherapy, which happens every other week over three days, requiring me to be outfitted with a take-home pump, which leaves me fatigued and immunocompromised—meaning I’m more susceptible to infections and viruses that can be deadly for those with CF.
Five times a week, I’m hooked up to a pole at home and given IV fluids to help me re-hydrate and recover quicker. Naturally, that’s required me to adjust my social life, relying on a network of friends who keep me company at my condo. I play cards—Rummy is my favorite—and have developed an affinity for puzzles. Although in one instance I was quite annoyed after spending five hours patiently putting together a 500-piece puzzle, only to find out that it was missing a piece.
Work has taken a backseat to the battle at hand, but my employer has remained supportive and helpful, allowing me to work remotely as much as I’m able.
Colleagues, who I miss interacting with dearly, have taken up the load in my absence. I’ve even come to miss the 45-minute commute to our Doylestown office from my home, and stopping each morning to get a hot tea—no lemon or sugar—at Dunkin’.
Simple joys like eating, which we all take for granted, are now a chore. I eat for calories—six small meals a day—not pleasure. My diet changed drastically, forcing me to learn just how many foods contain fiber. It has caused me to lose about 20 pounds off my already slight frame. I no longer enjoy foods I’d grown up eating almost ritually, such as macaroni and cheese and steak. As a result, I’ve stocked up on Fruit Loops and Apple Jacks, and I probably have enough boxes in my house to qualify as a cereal killer.
My platinum blonde hair with blue streaks is gone. That came as another shock, as my chemotherapy regimen doesn’t cause hair loss in most colorectal cancer patients. To deal with the hurt and depression of losing my locks, I’ve turned my room into a Hollywood-style dressing suite, equipped with multiple wigs that allow me to feel like a different superstar each day.
Now that it’s getting colder, knitted hats are a must to keep my cute bald head warm. But I’ve often scrapped the hats in favor of the bald look so I can emulate my idol, The Rock, who I remember watching as a little girl every Thursday night on Smackdown on the small television set in my room at St. Christopher’s Hospital for Children in Philadelphia.
Amazingly, The Rock learned about my diagnosis and put together a heartfelt video wishing me luck as I fight this disease. It was viewed millions of times on his Instagram page and allowed me to feel less isolated, being connected virtually to so many people who channeled their positivity toward me from the comfort of my couch.
Recently, some of the most renowned experts met virtually for the North American Cystic Fibrosis Conference. The big takeaway from that was the increase in life expectancy for cystic fibrosis survivors—a nine year jump up to 50 years of age, due largely to advances in medicine and treatments.
As science improves and evolves, our thinking must also. Screenings must become a normal routine for cystic fibrosis survivors. The sooner the better. My hope is that the experts will lower the screening recommendation to 30. But you don’t have to wait for that to happen. Go and get screened. Listen to your body if it’s telling you something. Be your own vociferous advocate.
I’m 34 right now and living in a world of uncertainty. There’s no set plan, timeline, end date or outcome for me. But every day I’ll get up and live here, regardless of what gets thrown at me. I’ll learn to be comfortable living in the uncomfortable. With more screenings sooner, you may never have to.