Category: Health (page 1 of 4)

To Life! – A Tribute to Dr. Tom

Scroll down past the big trees – he told us on his personal blog – and there you’ll find me. In a picture from one of his hiking trips, surrounded by beautiful tall trunks of some of the world’s tallest trees, there Tom Marsilje didn’t only find himself but introduced himself.

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Humble. Happy. Hopeful he was in the midst of something bigger.

As an oncology researcher who’d been inspired by his mom’s pancreatic cancer, his own cancer diagnosis was another leg on his adventure – one filled with molecules and proteins, T-cells and receptors.

To follow Tom felt like we were on the adventure, too.

He helped us discover the colorectal cancer landscape, many of us for the first time. When he faced information that applied either to himself or others, he stopped like any great explorer to examine each finding and take careful notes. (By way of many blog posts, articles, emails and Facebook posts.)

He unpacked the complicated vocabulary of oncology research for all of us following along. He didn’t only explain how clinical trials work, he helped build a tool to help people find them.

It was easy to forget Tom himself was fighting an aggressive disease. He was one of us, yet somehow he seemed light years ahead.

I guess that’s what made life with Tom feel like such an exploration – a plunge into the scariest, most confusing yet most enlightening and cathartic cancer journeys of a lifetime. As a true expeditionary, every scan and doctor’s appointment led to new doors and ways to travel.

And he brought us along for all of it.

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Colonoscopy #12

I’m happy to report I successfully made it through another colonoscopy. I’m pretty sure this was my 12th colonoscopy over the past 16 years.

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Prep

The doc recommended I return to using one of my preferred preps from the past:¬† Miralax and Gatorade. I know it’s not everyone’s favorite, but it’s much better than the gallons of salt water-tasting stuff I used to drink in the early days.

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5 Tips for Talking to Kids about Cancer

This summer my daughter made a cute craft box at summer camp designed to keep her prayer requests. As I ooo’ed and awe’ed over her decorating, it took my breath away when she opened it up. A yellow star crafted out of construction paper made her top prayer request clear as day. She prayed that I will not get colon cancer again.

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Long Overdue Health Update

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.

PatsysBench

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.

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