9 signs you might be a proactive patient

“What can we do in addition to what you’re prescribing?” we asked the medical professionals.

My husband, Gary, and I knew we didn’t want to sit around hoping surgery or treatment was all he needed; we instinctively wanted to be proactive in facing down cancer.

I remember exactly where I was when my cell phone rang. “It’s cancer,” said the deep voice I knew and loved

so well. “Oh, hon,” I said, letting my breath out, my brain firing in all directions like that little silver ball in a pinball machine.

As time passed, we determined a plan. And it served us well.

In Gary’s case, men with late-stage prostate cancer who were relatively young and in good shape could expect to live an average of two years.

But Gary was never one to accept ‘average.’

And so we recruited a team, and he was captain of the team, and he lived ten years with late-stage disease, and nine+ of those years were a good quality of life.

Keeping in mind that every cancer patient is unique, here are 9 signs you might be a proactive cancer patient:

1. Read … but don’t believe everything you read.

Gary and I knew of cancer patients who paid thousands of dollars for treatment in foreign places, who forewent treatment because they’d read supplements and a positive outlook could cure their cancer, who paid for expensive supplements and powders that were guaranteed to cure.

We did our share of reading, which was overwhelming because there was so much conflicting information, and we came with open minds to consultations with the medical professionals.

But we eventually set aside our reading to start living while Gary still had life.

2. Prepare for appointments.

It’s a great idea to recruit a friend or family member to attend all medical consultations — preferably someone who can take good notes because it’s easy to forget important points.

Write down questions at home and bring the list.

We certainly don’t know more than the doctors, but we know our own bodies well. So be open and honest about health history and physical quirks. (One of my physical quirks: I get light-headed and nauseated when a prolonged needle-through-skin procedure is taking place, even if I feel no pain. It’s because I think too much.)

3. Eat better.

I thought I fed my family healthfully — made-from-scratch meals, home-baked breads, no junk food or sugary beverages. But I baked with white flour and white sugar, and we ate white rice. So we needed to make some improvements.

Gary and I steered toward a plant-rich diet: We incorporated more veggies, fruits, whole grains, and legumes; eliminated unhealthful fats and sugars; and cut way back on red meats, eating small portions of poultry and seafood.

Looking back, Gary’s cooperation was crucial. If he had fought me on this nutritional endeavor, for the sake of keeping the peace I wouldn’t have persisted.

4. Get moving.

Every cancer patient is at a different level of health before the diagnosis, so more movement might simply mean a gentle walk around the block.

In Gary’s case, because he felt relatively well and because his treatment caused osteoporosis, we started pounding the pavement to strengthen bones. We eventually took up hiking and snowshoeing in the nearby Cascade Mountains.

Gary and I didn’t think changing our diet and exercising more was going to cure his cancer. But along with extended life, we were also shooting for quality of life. And eating better and adding more movement certainly helped achieve that goal.

Disclaimer: Before you make any changes to diet or physical activity levels, first consult with your physician.

5. Manage the stress.

Whether we’re the patient or the caregiver, cancer comes with a considerable amount of stress.

Gary and I discovered some rather simple, fun, inexpensive things that helped us manage the stress of our financial setbacks and a terminal cancer diagnosis:

• Getting outdoors was a big one — whether hiking to the top of a mountain, or sitting in lawn chairs in the park as geese announced their take-offs and landings on the river.
• We established a standing Friday date, which almost always included a hike followed by some great food.
• We enjoyed good books and movies, and enjoyed discussing them afterward.
• We practiced living in the present, paying attention and counting all that remained instead of all that would never be the same.

For pain and stress management, ask about oncology massage, lymphedema massage, or acupuncture.

6. Get connected.

Joining a group of people who have experienced what we’re going through — whether the group is sitting in a circle discussing the ramifications of being a cancer patient or caregiver, or they’re doing an activity together — can nourish strength and hope. Powerful words, these: “I get it” … “I’ve been there.”

7. Practice gratitude.

Gary and I weren’t thankful for cancer interrupting our lives, bullying us, arriving at a time when our finances were fragile due to a job lay-off.

But in time, we learned — instead of counting all that would never be the same — to count what remained:

• Kids and grands who think the world of us
• Relentless, energetic, generous friends and extended family
• Beauty of snow tumbling downward
• Roof over our heads, cupboards stocked with food, switches that magically turn on lights and heat
• FaceTime conversation with all six grandkids at once — zaniness!
• Aroma of cinnamon candle flickering
• One more day with my beloved

8. Give back.

Finding a way to give back can add meaning to an otherwise senseless diagnosis. Gary and I established a non-profit and, working around our day jobs, traveled across the country sharing what we were doing to live well with metastatic disease.

One of my cancer survivor friends knits prayer shawls for chemo patients, and a friend who is a cancer caregiver rocks frail newborns in the NICU at the local hospital.

Giving back goes far in taking our thoughts off our own losses as we focus on the hurts and sorrows of others around us.

9. Consider hospice care for the terminal patient.

When Gary opted out of further chemo, a referral was made for hospice care.

I remember thinking: Wait … isn’t it too soon?! 

Most people think hospice care is for the last few weeks and days of life. But it’s not. It’s for the terminal patient who opts out of ongoing treatment or surgery. The hospice team’s goal is to provide care in the comfort of the patient’s home. And it’s better to get them onboard before there is a crisis.

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Even though we didn’t fully understand the value of being a proactive patient and caregiver at the beginning, it was one of the wisest things we did.

Because proactivity says, I’m not going to sit back and hope surgery or treatment is all I need.

It says,  I’m going to live a brimming, fierce, courageous, full life — as much as it depends upon me.  

Take that, cancer.

Marlys was the caregiver of her husband Gary who lived ten years after being diagnosed with late stage prostate cancer. After his diagnosis, together they founded a non-profit called Cancer Adventures, sharing their story with groups across the country. After Gary’s death in 2014, Marlys has continued to share the underlying theme of her and her husband’s story: How challenges are a part of life but you have choices. She has a passion for helping people navigate life’s challenges, having negotiated a few herself.