Kelly Irvin is a multi-published novelist and former newspaper reporter who worked in public relations for more than 20 years. She retired from her day job in 2016 after being diagnosed with primary lateral sclerosis, a degenerative motor neuron disease, and stage 4 ovarian cancer. She spends her days writing and loving her family.
It makes sense to take stock of cancer treatment — its physical, emotional, and spiritual cost, and what people want out of life going forward. Here, a patient with cancer writes how It’s OK to say, “Cancer treatment sucks and I hate it, even when the big prize, our buddy NED, has taken up residence in our bodies.”
A student physical therapist who hasn’t even taken her boards yet was the one to give me permission to open my mouth and admit that cancer treatment sucks — even when it’s keeping me alive past the expiration date stamped on my forehead by stage 4 ovarian cancer.
I was explaining to her that severe acid reflux followed by vomiting caused by my cancer treatment had made it hard for me to keep up with my home PT program. She nodded and said in that beautifully succinct way that millennials have, “That sucks. Chemo sucks.”
It does, but I’ve tried to avoid voicing those sentiments because my cancer treatment is working. I’m blessed to be alive. That’s the goal for all cancer patients, isn’t it? We’re to be thrilled and happy. Fight the good fight. You’re brave. You’re an inspiration. What’s a bald spot on the back of my head, high blood pressure, fatigue, nausea, acid reflux, brittle nails, border-line anemia, low white blood counts, and loss of taste compared to the alternative? Did I mention I’m alive?
My oncologist is employing a non-standard-of-care regimen of a low dose chemo drug coupled with a tumor-starving drug that on its own was no longer able to stave off progression. Until a few months ago, another chemo drug was part of the mix as well, but I had an allergic reaction and it had to be discontinued. Still, the remaining drugs continue to thwart progression. So I hang out in the infusion room every third, sixth, and seventh week in perpetuity, or until disease progression.
When my gynecological-oncology surgeon heard about this plan, he was vocal in his disapproval. “If you go to any other clinic in the country, they’ll tell you it’s crazy.”
That was eighteen months ago. This is no evidence of disease’s (NED) longest stay at the Irvin residence in five years. That’s the prize I’ve received every three months after a CT scan — so far. My tumor markers remain nestled in the teens.
Therefore I feel guilty for wondering as I trudge through the house with a barf bag in my rollator’s basket if it’s worth it. When there’s more hair on the floor than on my head. As I eat prunes, peaches, pears, oatmeal, and then resort to a constipation-busting med. I smile and applaud my husband’s cooking even though we both know I can’t taste his latest dish.
My oncologist works hard to alleviate the symptoms where possible. Two kinds of hypertension meds. Anti-nausea meds. Anti-reflux meds. Unfortunately, these lead to more constipation. So then there’s constipation meds if fiber-filled foods don’t get the job done. That’s the thing. Treating the side effects often leads to new side effects. My medicine cabinet is more like a pantry.
I know I’m singing to a choir of cancer patients. We all experience the side effects. But I read a book recently called “Being Mortal: Medicine and What Matters in the End” by Dr. Atul Gawande, a surgeon and son of a cancer patient. He points out that modern medicine uses whatever means is necessary for a patient to survive. Survival is the goal. Gawande suggests that it would be helpful as we grin and bear the side effects to ask ourselves these questions: What are you willing to give up to survive? What do you not want to give up? What does a good day look like for you? Then work toward it. No, he’s not advocating giving up treatment. Only ascertaining how important quality of life is and how you define it.
So I answered these questions. I won’t give up writing fiction. I won’t give up visiting my grandkids and playing with them (when the pandemic allows). I want to be clear-headed so I can keep reading all the wonderful books in the world. I want to be able to go to church, bible study, and Sunday school in person. What does a good day look like for me? I drink coffee, eat crunchy peanut butter and toast for breakfast, then go to my home office, write novels, poems, and short stories. Deadlines are met. I exercise for an hour. I FaceTime with my daughter and grandkids. My husband and I enjoy supper together. Then I spend the evening reading or watching “Resident Alien” and laughing with him.
I can do those things if I continue this treatment regimen — for as long as it works. Not all cancer patients get to say that. Their pain is too great, and the pain meds make them fuzzy-headed and lethargic. They’re unable to eat because of bowel blockages, or they experience nausea because of the build-up of ascites in their stomachs. They’re too weak to walk around the block, let alone exercise or travel. They’re unable to participate in social gatherings because of their compromised immune systems. And a litany of other ailments that steal those good days from them.
It makes sense to take stock of our treatment — its physical, emotional, and spiritual cost, and what we want out of life going forward. It’s OK to say, “Cancer treatment sucks and I hate it even when the big prize, our buddy NED, has taken up residence in our bodies.” We know Mr. No-Evidence-of-Disease can abandon us at the drop of a hat — or a cancer cell. So it’s OK to say, “I’m willing to do this, but I draw the line at that.” This gives us a sense of control over our destiny. We all need that. We deserve it.
Now I’m off to eat some more prunes.
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