Survival is a choice every two weeks.
It’s been a year since I was diagnosed with stage IV colorectal cancer — I spell it with a K to take away its power. Initially, I was placed on immunotherapy. When that didn’t work, doctors recommended chemotherapy. So far, I’ve responded positively to the treatments.
To take a roll call, when initially diagnosed, I had more than 10 lesions on my liver, a large mass in my colon, and others in my stomach lining and lymph nodes. Today, much of the cancer has been eviscerated through surgery and chemotherapy.
In December, I had major bowel resection surgery to remove the primary tumor in my colon. Both of my cancer-ridden ovaries were removed, resulting in extreme menopause requiring hormone replacement to curb the symptoms.
The good news is only four small spots, measuring in the millimeters, remain on my liver — a drastic improvement from my grim outlook at the outset of this battle.
Despite that progress, I remain on what the doctors call “maintenance chemotherapy.” I’m told it’s something that might be required for the rest of my life since there’s no way to officially declare — through blood tests, surgery requiring clean margins or full-body scans — that I have “no evidence of disease.”
In the continued fight toward remission, this makes me feel like a very expensive car that requires constant upkeep just to have hope that the universe continues extending my warranty. There's no Delorean I can get into and time-travel back to before I was sick.
Right now, I’m battle-fatigued and tired of fighting. That's OK to admit, because I know, deep down inside, I won’t stop.
Part of me made peace with the fact that this is my new normal. But I still struggle to convince myself every two weeks to muster up the energy to continue with treatments, seemingly in perpetuity.
The internal dilemma goes something like this: Anna, you’re strong. You got this. You’ve dealt with cystic fibrosis for 35 years, and all that encompasses: breathing treatments, downing pills, doctor and therapy visits to manage the emotional, physical, and psychological tolls from the trauma.
Then there’s the part that tells me to waive the white flag: “Chemotherapy makes you feel like sh*t. You’re drained. You have no energy for breathing treatments, work, and social activities you once enjoyed. You’re a couch potato. Give up!”
On top of that, scanxiety is a real thing — every two to three months feeling like your life is on the line all over again. I sat catatonically outside my condo waiting for a friend to pick me up to head to the hospital. My brain went to all the bad places: Are the treatments still working or is my cancer spreading? How much time do I have left?
This feels like some sort of toxic arranged marriage of uncertainty. Sometimes it's painful getting out of bed and facing these monsters that live inside of me — CF and cancer — knowing the alternative — death — is worse.
A lot of what I’ve accomplished in life — getting elected to public office, ensuring loved ones have what they need, maintaining a veneer of invincibility while hurting on the inside — has been driven by a desire to please people and appear perfect.
In the past, I devoted 110 percent of my energy toward external goals rather than focusing on self-care and my own welfare, for fear of appearing selfish. Nowadays, I no longer feel guilty saying no to certain things. It’s what’s required for my survival.
I’ve retrained my brain to focus on the little wins: cooking myself dinner, helping organize and run a CF nonprofit, even writing this blog.
When doubt creeps in, I watch the video The Rock — yes, that The Rock — made for me or play ball with my dog, Roman, and take him on walks. He's helped keep me sane. I also adopted a Beta fish, Fred, from another CF family. Fred can’t have friends in his tank, because he’s a fighter. We have that in common.
And I’m going to continue fighting, no matter what, for my friends, family, and above all, myself.
I’m looking forward to taking a trip to California and spending time at Sea World in San Diego, lounging with Emperor penguins. They’re one of my favorite animals because they're birds that don't fly. They’ve adapted to survive, just like me.
I'm not suffering; I’m adapting to life with CF and Kancer. When you do the math, there are always more good days than bad. Having CF all these years has made it easier for me to handle the curve balls. We all know what it is like to feel OK one day and then have the other shoe drop the next.
I still live in a world of waiting for the other shoe to drop. But I'm hopeful one day that the world runs out of shoes to drop on me.
My story’s going to be different. It’s not gonna go according to plan. Plans are overrated, anyway.
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