Sometimes I sit so comfortably in cancer survivorship that I forget to write health updates. I think that’s normal. Oftentimes when we’re sick, we’re diligent to update friends and family when we’re in the thick of treatment and surgery. People are praying. Cooks are cooking. Friends are offering to do everything from errands to laundry to scrubbing off that really gross substance at the bottom of the oven.
But when the “thick of it” passes, we survivors often drop off and the updates slow down. In honesty, it’s a gift of survival that we often don’t realize. Cleaning the oven ourselves becomes the gift. Sometimes it takes cancer to see it.
Reminders of Patsy
My friend Patsy has been on my mind all week. She passed over a year ago from stage IV colon cancer, but I promise it’s like her spirit is following me around. Small instances like hearing a song from her funeral or thinking about our conversations have come to mind. They’ve reminded me of my promise to her.
Patsy was known for dancing in the kitchen. For throwing a big party and letting everyone join her. She loved to celebrate. She was very passionate about educating everyone about colon cancer.
The last time I saw her, just weeks before she passed, she made me promise to keep going. To keep educating people. To keep living.
And for me this week, I knew that meant blogging a long overdue health update. Not because anything is wrong. But because so much is right. Despite the fact her prognosis was different than mine, I can hear her telling me right now – go blog your life and share it with everyone.
We have to educate them!
Living the 16-Year Survivor Life
I am channeling Patsy to give you this health update.
I am still all-clear. No evidence of disease. Hallelujah.
My colonoscopy last fall didn’t have any polyps or concerning findings, I will repeat it sometime this upcoming fall. Because I have Lynch syndrome, I also get upper scopes (endoscopy) every few years – and all of that was clear last fall too.
I still wear an estrogen patch since I had a hysterectomy several years ago, it’s helping curb most of the menopausal side effects. I still get hot at times, but then again it’s July in Kansas City. My blood work looks good – my pee too. (They check it now because of Lynch).
I began going to a survivorship clinic a few years ago at the University of Kansas Cancer Center, which was a big change for me, but a good step. I met with them last week.
The doctor and my *amazing* nurse navigator don’t only help me manage the risk of cancer – but they also tell me what to monitor because of all the treatment I’ve had. We don’t do scans any longer since I’m so far out from a late-stage occurrence, but they do remind me to see a dermatologist (since radiation increased my risk of skin cancer), a geneticist (who helped get my brother tested – he doesn’t have Lynch so I’m truly our family’s mutant), the dentist (chemo could have an effect on my teeth), and any other doctors or professionals that I need.
If you have access to professionals who do survivorship care plans, I highly recommend it.
While my bill of health is good and the threat of cancer seems dim, I do still have long-lasting chronic side effects. Thanks to radiation therapy, I’ve got a mean case of proctitis I’ve battled for many years and I am still looking for answers. Fatigue likes to appear, and I’m always changing my diet and nutrition based on what my body can and can’t handle on any given day.
They’re minor issues compared to what I faced 16 years ago. I feel very fortunate and try to be mindful to not take it for granted.
Advice for Other Survivors
I’m often met with fear when I sit down and write – I think most writers go through this. But sitting down to write about being a cancer survivor often brings an extra layer to process. The grief hits me when friends come to mind who’ve passed, friends who will never be able to write a post like this.
And then the guilt sets in. Oh how I loathe that guilt.
Sometimes it does win, and I hesitate to celebrate survival. But this week my promise to Patsy kept ringing through my mind, and I think she wants me – and anyone else who can relate – to stop it. I think they’d want us to share.
Their legacies are full of wishes for us to keep on living. To connect, open up and fight for others so they either don’t have to face disease, or they can live under the umbrella of a cure.
They want us to clean our own ovens. To dance in our kitchens. To find things to celebrate.
They want us to inspire, and educate, by our simple health updates.