CaregiversPatient Stories

Both Sides of the Coin: From a Caregiver to a Patient with Advanced Brain Cancer

Kelly Rodenberg, author of There’s Something Going on Upstairs, offers her insights from being a caregiver to her husband Bob to dealing with her own glioblastoma diagnosis.
August 2021 Vol 7 No 4
Kelly Rodenberg
Chaska, Minnesota
Author of There’s Something Going on Upstairs: Learning to Laugh My Way Through a Cancerous Brain Tumor, One Chemo Cycle at a Time
Bob and Kelly—stronger together.

What do you do when you learn you have a brain tumor? Laugh! Cancerous brain tumors are not funny—unless you are me. Life took a turn in October 2012, when I was diagnosed with stage IV glioblastoma.

“Something Going on Upstairs”

What I believed to be a pinched nerve from a wonderful massage, was the start of 10 days of annoying typing mistakes at the office. That led to a visit to a neurologist, who stated, “I think there’s something going on upstairs,” and I was admitted for an emergency MRI.

Ultimately, my husband and I sat speechless as we viewed scan images of a golf ball-sized tumor above my right ear, affecting my left hand and arm. I had no headaches, dizziness, seizures, or vomiting, but annoying left-hand typos, and surgeons telling us that they were quite sure the tumor wasn’t there 6 months earlier.

It has been no easy feat to come to grips with the fact that this is a journey that is never going away. It’s not something we can fix and move on. Regrowth and recurrence are continually knocking on our door.

The Tide Turned

Glioblastoma has mustered up every inside and outside emotion I have, but there have also been countless blessings. The minute I started living with a disease instead of in spite of a disease, the tide turned, the sun shone brighter, and I knew I wanted to be an advocate to every person with a brain tumor, every heroic survivor, every overworked and underpaid caregiver, and every well-­intended soul out there.

My doctors at the Mayo Clinic in Rochester, Minnesota, were successful in removing 95% of my tumor, and I know I am not off the hook.

Before my diagnosis—when I thought of “Mayo” only as a condiment, not a destination—my husband, Bob, had a great experience at the Mayo Clinic, so we knew that this was where we wanted to go for a second opinion after my initial diagnosis.

Despite the dire statistics associated with my glioblastoma diagnosis, I choose to focus on hope, humor, and happiness. Sure, life with a fast-growing brain cancer can be tough, but this farm girl is even tougher.

Bob and Kelly

As spouses, Bob and I have a lot in common. We share a home, a love of travel, and a sense of humor. But we also have something else in common—incurable illnesses that have profoundly affected our lives.

In 2012, Bob was diagnosed with a rare blood disorder called POEMS syndrome that affects multiple body systems and requires a stem-cell transplant and chemotherapy, like some blood cancers. My glioblastoma is an aggressive type of brain tumor, with limited treatment options.

Rather than allowing our conditions to cloud our days, however, we have chosen to channel our energy toward compassion and gratitude. Tops among the things we are thankful for is the expert medical care we have received at the Mayo Clinic, which has allowed us more time together.

Both Sides of the Coin

Having experienced both sides of the coin—first as caregiver for Bob during his battle with his illness, and now as a patient in my brain cancer diagnosis, my focus is on sharing our experience to help and encourage other people.

Neither role is easy. It’s hard asking for help, and it’s hard receiving help. The caregiver burnout ratio is high. You need to learn to put your own health first so you could help others.

We feel so fortunate, because Bob got assigned a doctor who wrote the book about POEMS, and I was fortunate to have as my surgeon a professor of neurosurgery with 30 years of experience in his field. You don’t have such connections (or miracles) happen often.

We have both undergone extensive treatment at the Mayo Clinic, including chemotherapy and a stem-cell transplant for Bob, and brain surgery and chemotherapy for me. And although we didn’t envision our lives and relationship to involve chronic diseases, walking similar paths has deepened our understanding of each other’s journey.

If there is a silver lining in all of this, it’s that we’ve been in each other’s shoes, and maybe have a little more compassion for what the other is going through. We joke that we were perfectly made for each other. Same roof, same chemotherapy, same stinking cancer word.

Tips for Caregivers

Here are some suggestions from the other side of the fence, as a caregiver. Know beyond a shadow of a doubt, all fighters and their overextended caregiver would be eternally grateful to receive any one of these.

Bare-basic grocery shopping. Think paper towels, laundry detergent, bread, juice, eggs, bananas. Shop in store or order online and have it delivered to the patient’s home. Forget about brands, specific tastes, or asking whether something is what your loved one would like or not. Indecisiveness like that prevents your follow-through.

After Bob’s stem-cell transplant, we were returning home after spending 6 weeks in Rochester. I’ll never forget Bev and Dan Faulkner calling and asking us for our garage code. They took it on themselves to stock our refrigerator and pantry with a few staples. What an unbelievable blessing this was.

Offer rides to treatments. We were lucky with logistics. Many caregivers juggle full-time jobs and may have added hurdles, such as busy meeting or travel schedules. Receiving the gift of transportation to an appointment on a hectic day is a huge relief.

Babysit or offer to take school-aged children for a few hours. Although I know nothing about it, I can only imagine what this is like for a mother or father who needs help with young children. Taking the kids for an impromptu sleepover or Saturday morning outing may give your struggling loved ones the rest and quiet they need.

Bring a meal or work with friends to organize meals. Basic dishes that are easy to freeze and reheat become lifesavers. Toss-away aluminum pans or reusable plastic containers are a plus. Because visitors can be tiresome and germs may be a concern, offer to leave meals in a cooler outside their door.

Pet-sitting or plant watering. I’ve heard that pet boarding is expensive. If your loved one is going out of town for a procedure or a medical appointment, offer to care for any pet. Should you be one of the green thumbs of the world, volunteer to water interior or exterior plants.

Text an inspiring quote. We cancer warriors need all the encouragement we can get, and hearing from you means the world to us. A few kind words—especially a question-free message not requiring a return response—breaks up our day and lets us know we are loved.

Consider the caregivers. Their lives have dramatically changed too. Invite them to a game, a car show, a round of golf, a cup of coffee, or a simple Sunday afternoon drive, just as you did before. Just because their spouse isn’t up for getting out of the house doesn’t mean they aren’t or can’t. The break will mean a lot to them. If it’s not a good time for a break, they’ll let you know. They will appreciate the gesture, as well as the glimpse of normalcy.

Mail a gift card. Unexpected expenses—extra gas for treatment travel, extra meals out, astronomical medical bills—take a huge toll on every patient’s budget. Any gas, grocery, restaurant, hardware store, or hobby/craft store gift card is a welcome surprise. If your loved ones enjoy reading or music, Amazon or iTunes gift cards could provide new entertainment to get them through long treatment sessions.

Pay for a one-time service, or volunteer a few hours for cleaning, mowing the lawn, removing snow, shopping, or doing holiday decorating. This is the perfect service opportunity for helpful teenage kids. If the kids have trusted supervision, the job could be done while the family is away at treatment or out of town.

Soft and cuddly gifts. If knitting is your thing, consider making a prayer shawl, soft cap, or socks. Thoughtful gifts like a new set of slippers, pajamas, pull-on pants, or V-neck t-shirts (allowing easier port access) would be a definite plus. Pamper your loved ones with items that are cozy and comfortable.

Send snail mail. Nothing brightens a day more than finding a hand-addressed note in the mail among the medical bills. Recognizing the handwriting and return address will instantly bring joy to your loved ones’ hearts.

Donate blood in their name. Cancer and other illnesses prohibit patients from donating, so we appreciate the throngs of you who do donate that much more.

Host a scarf and hat party. This suggestion comes from my online support groups. Maybe it’s a regional trend, but I’m pretty sure it would be viewed as a welcome celebration for anyone who is worried about losing hair. Bring together close friends, light refreshments, and a variety of headwear options. What’s not to love? It’s sure to make the transition easier. Kindly take into consideration treatment cycles, and when your guest of honor may be feeling best.

Stronger Together

Throughout life, especially in times of hardship, we are definitely stronger together than we are apart. Personally, I simply appreciate every thoughtful person who takes the time to act.

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Last modified: August 25, 2021

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