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  • Writer's pictureMiriam Diaz-Gilbert

What I've Learned as a Cancer Caregiver 5 Years After My Husband Endured Cancer Twice

Updated: Mar 14

March is Colorectal Cancer Awareness Month. Don't Delay Your Colonoscopy.

Photo by: Frank McKenna on Unsplash

March is National Colorectal Cancer Awareness Month. In March 2018 my husband Jon had a colonoscopy that revealed a large mass. It was stage IV cancer. The cancer metastasized to his lungs. I became a cancer caregiver. I immediately started to plan my cancer caregiver to-do list.

My to-do list included helping my husband prepare an advance directive/a living will, a last will and testament, and scheduling all of his MRIs, scans, chemo, radiation, surgery, and doctor appointments.

With a cancer diagnosis comes other life planning matters. Don't wait for a cancer diagnosis to finally propel you to create an advance directive. Every state has advance directive templates. You can access them here. There is no time like the present or the shock of a cancer diagnosis to whip that last will and testament into shape, or to update it. You do not need an attorney. This website has last will & testament instructions for every state.

In this post, I share what I've learned during the last five years as a cancer caregiver and as my husband's companion on his cancer journey, not once but twice.

I am a positive person. I always see the glass more than half-full. My husband is the half-empty glass kind of guy. I suppose we are evidence that opposites attract.This might explain why we have been best friends for almost forty-four years and married for almost thirty-eight years.

It wasn't always easy to help Jon stay positive as he endured chemo, aggressive radiation, and several surgeries. But there are many ways to stay positive after getting a cancer diagnosis.

When I became a cancer caregiver, I become a patient advocate. As positive as I am, being a cancer caregiver and a patient advocate is grueling. As a caregiver and support, I made all of Jon's appointments for a slew of MRIs, CT scans, blood work, and related appointments. Accompanying Jon to his chemo infusions, his radiation treatments, waiting hours for him to come out of surgery, being with him when he was an inpatient in the hospital, and by his side as he recovered at home was physically and emotionally overwhelming and draining.

But I remained grateful and baked bread, cookies, and pies for his oncologist and the amazing nurses who cared for him.

With cancer comes cost. Jon and I experienced the astronomical cost of cancer care and treatments. Even with health insurance, whether through an employer or self-insured (we are self-insured), cancer care is a huge expense. At the time of Jon's diagnosis, we had a deductible to meet before insurance kicked in. But the good news is that due to the high cost of scans, biopsies, chemo, radiation, etc., we met our deductible in a couple of weeks. The rest of the year, insurance paid and we paid our out-of-pocket costs.

Then the cycle of a new insurance deductible at the start of the new year began when we renewed our insurance policy and the cost of high premiums. We also learned that the hospital/cancer treatment center has a good monthly payment plan. I can't say this is true of all hospitals and cancer treatment centers.

We don't drink, smoke, or take drugs. Jon and I have always eaten a healthy diet and have always been physically active. Research shows that physical activity is beneficial during cancer care. Cancer or any illness doesn't have to sideline the cancer patient and the cancer caregiver(s). I'd like to think that Jon's cancer treatment at a top university and teaching hospital with excellent surgeons and oncologists, along with staying physically active, helped Jon to achieve remission in May 2020 during the height of the Covid pandemic.

From the moment he was diagnosed to the time he was declared in remission, we hiked in eight national parks and I ran four ultramarathons and five virtual ultramarathons. My article, Cancer Did Not Cancel Our Plans, was published in Cancer Today. Life and fun went on for us.

Then, life threw Jon another curve ball. His cancer returned in July 2022. It was déjà vu. He received the diagnosis four days before our scheduled road trip to national parks in South and North Dakota. But again, cancer did not cancel our plans. We had so much fun on our 5,000-mile road trip and hiking in five parks.

A few weeks after our road trip, Jon endured a new surgery. After recovering from his surgery, he began thirty-three consecutive days of grueling chemo and aggressive radiation, except on weekends and Thanksgiving. The long and painful recovery from the surgery meant he could not drive. I became his chauffeur and drove him to and from the cancer treatment center and his work sites.

Hiking in Badlands National Park in South Dakota four days after Jon's diagnosis of recurrent cancer
in July 2022.

Sometimes, the cancer caregiver has their own health issue and doctors appointments. During Jon's second cancer journey, I was dealing with my my own health challenge: eosinophilic esophagitis (EoE), a rare autoimmune disorder of the esophagus, and maintaining a restrictive and healing diet. Jon, the full-time cook at home, was too weak to cook. I prepared all our meals and took care of all of our household responsibilities, again. Foods that I could eat, he could not. Chemo and radiation affected his taste buds; certain foods and smells made him nauseated.

Jon had his last chemo and radiation treatment a few days before Christmas 2022. Last week and almost five years to the date of his first cancer diagnosis in March 2018, Jon had his first scan since his last treatment in December 2022.

We got good news: the scans look good and clean. It looks like the radiation and chemo worked, again. Naturally, there is always the fear the cancer will recur.

But this fear won't stop us from enjoying life and from embarking on another road trip this summer to more national parks. And it won't stop Jon from crewing me at more ultramarathons, as usual.

As a cancer caregiver these last five years, I've seen, experienced, and learned quite a bit. While all aspects of a cancer diagnosis and treatment are emotionally, medically, and financially draining, it's important to maintain positivity and to enjoy the things you love.

And while there are things in life we can't control, like the weather, scheduling a colonoscopy is in our control. Nothing good can come from delaying, ignoring, or cancelling a colonoscopy. Doing so will negatively affect the patient if the diagnosis is cancer, no matter the stage or how far advanced. The diagnosis will also impact the life of the cancer caregiver and the family.

Being physically active and eating a good diet will not necessarily prevent colorectal cancer. Know the signs and symptoms. Colorectal cancer affects all age groups, including people under age forty-five.

Please schedule your colonoscopy today.

I am the author of Come What May, I Want to Run. Our journey as cancer patient and cancer caregiver, and hiking in the national parks is a theme in my book. Read more and order you copy here.



Running in Sickness and in Health in Chicken Soup for the Soul: Running for Good


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