A patient with stage 4 ovarian cancer still receiving treatment six years after her first diagnosis explains that even though she’s exhausted from all her treatments and the related side effects, she knows many others don’t survive as long as she has.
My port and I met on January 19, 2016, six days after I received my stage 4 ovarian cancer diagnosis. My first chemotherapy started so late in the evening that it rolled into January 20, my 58th birthday. Since then, I’ve had three recurrences and been in treatment continuously for six years.
I’m struggling this month to pinpoint how I should feel about my status as someone who has thus far beat the odds. Some things have changed, but others have not. What does this anniversary mean for me as I start another year of treatment?
To help me process these feelings, I peeked back at the journal I kept in those early days and found I still ponder some of the very same issues.
January 16, 2016: “It strikes me as so ironic that when I was having the irregular mammogram and getting the breast biopsy and worrying about the results, I already had ovarian cancer. They couldn’t see it or know it was there. That’s the sad thing about cancer detection, it seems. I had my annual exam and my pap smear, and it was all fine and dandy. Yet, cancer was growing in my ovaries and spreading in my body that entire time. A silent, deadly enemy taking over territory during the cover of night. We have to get better at detecting these cancers. Early detections are everything. I want to shout it from the roof tops. Get your mammogram, get your colonoscopy, get your pap smear, don’t wait, do it today.God gave us these bodies. He gave us science and medicine and all the tools with which to care for them. We take healthy bodies for granted. Eat well, sleep well, exercise and treat your body as the gift God gave you.”
In six years, none of that has changed. No diagnostic tool has been developed for ovarian cancer, although new, more effective treatments that prolong life have come on the market.
Then there’s my entry regarding my port placement and first chemotherapy. It was done in the hospital so that insurance would cover it.
January 19: “I wonder if this is a test. If it is, I’m failing. We’re in the hospital, we have the room, I’ve had my vitals taken, I’ve taken a shower, and here I sit. Hungry and thirsty, waiting. It’s necessary to fast before having a port ‘installed,’ as Tim called it, because of the waking sedation. They have a CT room “down” in radiology, so they’re backed up. I came in at 8:30. I get in at 3:30. So I’m cranky. I try so hard not to take it out on the nurses. Don’t kill the messenger. But I’m frustrated. I’m nervous. My first port, my first chemo and I’m waiting. It seems to be a theme in my life now, waiting for doctors, waiting for tests, waiting for results, waiting for bad news. Waiting to start the treatments that will save my life.”
I’m still terrible at waiting and it seems that’s all I do — six years later. I’ve gotten better, but I’m still not great at it. I still fume. I still pace. But I zip up my lips.
So how does it feel to still be here? It feels good, but it also feels like an eternity to constantly deal with chemo, side effects, scan anxiety, insurance quagmires and changes in my body that keep me from doing many of the things I love. But then I feel guilty for complaining. After all, I am still here.
I’m currently participating in a clinical trial at a facility that only does phase 1 clinical trials. Consequently, I’m frequently getting treatment with patients who are precariously ill. Their clinical trial drug isn’t helping them like mine is helping me. Many are facing hospice.
During my last treatment a woman came in who was suffering from severe pain and nausea. She said it was worse than labor. She kept trying to breathe through it. Finally, the painkiller kicked in and her breathing slowed. Meanwhile, I’m complaining to my nurse about the need to dig around in my scarred veins for a lab draw because the study protocol doesn’t allow her to use my port for it. Seriously? It’s a needle prick.
It’s all about perspective. I’m still here and still pain free. I suffer from fatigue, anemia, high blood pressure, thinning hair, insomnia and neuropathy, but I’m still here.
During these past six years, I’ve lost friends and acquaintances to cancer. A dear woman I’d known for years — and her husband even longer — died one year after her diagnosis from an aggressive form of uterine cancer. In the last few months, a beloved member of my church’s congregation died of colon cancer. The brother of a member of my Sunday school class died of cancer, leaving behind a wife and two children in grade school.
I don’t understand it. It’s not like they didn’t pray as hard for healing. They had good doctors and good treatments available to them. Yet, I’m the one still breathing. I can’t call it survivor’s guilt because I don’t feel like a survivor. I’m still in the trenches. I always will be.
So how do I deal with it? By telling myself not to waste a moment. I don’t get to know why, but I am certain I better make good use of my time. The pandemic has made this much harder, but I get up, I get dressed, I go to my office, and I work. I write novels, short stories, poetry and blogs. I must not let myself drown in a sea of anxiety and depression stoked by the isolation caused by the pandemic. I spend time with my husband, FaceTime with my daughter and grandkids and celebrate every special occasion with my son and his wife.
Ultimately it doesn’t matter why. What matters is honoring those who didn’t get those extra years by doing my best and being the best version of myself for as long as I am here.
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