Dear Sen. McCain: Here’s what I’ve learned from living with glioblastoma

Dear Sen. McCain,

I was saddened to hear that you received a diagnosis of glioblastoma. I also live with this particularly aggressive type of brain cancer. On the surface, you and I are very different. I am a 35-year-old dad with three sons aged 5 and under. I have a beard and listen to indie rock. I hold undergraduate and graduate degrees in philosophy. My home is in the heartland, though in my childhood I lived in your beautiful state of Arizona. You are 80, a distinguished member of the U.S. Navy, a war hero, and a long-serving U.S. senator at home in the Southwest and Washington, D.C. Yet we’re now connected by this terrible brain cancer.

I’ve learned a lot about glioblastoma since I was diagnosed with it 14 months ago. Most of this knowledge I acquired on my own, reading with a science article in one hand and a dictionary in the other. Although everyone’s journey with this disease is different, I thought that sharing my experiences with you might answer some questions and provide a thoughtful guide as you embark on your journey. In this letter, I offer nine ways to live with glioblastoma.

Anticipate the unexpected. I heard faint crackles and pops and the occasional squeak, as if I was holding my ear closely to a bowl of Rice Krispies, for months after undergoing surgery to remove the tumor from my brain. These sounds, which only I could hear, were the result of my brain expanding to fill the void left by the surgical removal of a 71-millimeter tumor.

Find your community. Our disease is so uncommon, our stories so unique, that when we meet others living with brain cancer, the friendship comes fast and the learning follows. Swapping stories is a favorite practice among those of us living with brain cancer — stories of MRI scans, surgeries, supplemental treatments, bad news and good news, diagnosis anniversaries, and steps toward acceptance. Unlike more “manageable” cancers with large survivor populations and support groups, ours is a smaller community. But I urge you to join it. Your brothers and sisters in the glioblastoma community can describe common side effects of treatment, offer tips on getting better sleep, and recommend helpful resources. Most of all, others in our community are best at offering a listening ear from someone who’s been there.

Embrace family. Your daughter, Meghan, uplifted our spirits when she released a statement about her boundless love for you. Our families view themselves as partners in our care, and they see it as a privilege to stand at our sides.

Carefully weigh your choices. My neurosurgeon offered two strategies to remove glioblastoma from my brain: a conservative approach to maintain eloquent functions like motor coordination, balance, and sensory awareness while leaving glioblastoma’s invasive tumor “tentacles” in the brain; or an aggressive approach to remove as much of the tumor as possible at the risk of permanent cognitive impairment.

My neurosurgeon recommended that I make my decision based on my quality of life today, not what I imagined could be the case in the future. I thought that made sense, and I decided to take the conservative path to maintain the function that remained after the glioblastoma had smashed parts of my brain.

I worry each day that I may have made the wrong choice and should have opted for the aggressive approach. But the fact that I can walk with minimal instability and can “run” and play with my children on our lawn validates my decision again and again.

Expect to have seizures and headaches. For most people living with brain cancer, headaches and

seizures become a way of life. Most of us learn to anticipate them. If they become part of your experience, senator, I suggest that you pay close attention to your body. My focal seizures — electrical instability in a single hemisphere of the brain — begin with a tingling at the base of my skull that eventually proceeds to crawl down my left arm and leg, followed by dizziness and weakness. In a journal, I keep track of my schedule, what I eat and drink, changes in medication, and the appearance of seizures or headaches. That can help you and your medical team identify trends and possibly find ways to adjust medication to minimize or prevent seizures and headaches.

Communicate with your medical team. No matter how experienced your doctors are, or what credentials they have, they know only the information presented to them. Don’t expect your daily symptoms to be revealed by lab work. That journal I mentioned can be a treasure trove of valuable information.

Prepare for “the fog.” Glioblastoma often causes memory loss, trouble finding words, and a kind of mental fogginess. I set a timer in 15-minute increments, especially while completing computer work. When the timer sounds I stand up if feeling up to it, take a drink of water, and walk a few steps before returning to my work. These frequent short breaks help with fatigue.

Pursue your work. Although our disease has a grim prognosis, it need not stop us from our work. Since my diagnosis, I have delivered several lectures at academic conferences, in medical schools, and to the community. I joined patient advisory groups with leading brain cancer organizations, including the National Brain Tumor Society, whose Defeat GBM Research Collaborative is committed to doubling five-year survival rates over the next 10 years. In May of this year, I traveled to Washington, D.C., to meet with elected officials from my home state of Indiana to ask them to commit to increasing the budget for the National Institutes of Health and the National Cancer Institute. The National Brain Tumor Society organizes this annual event called “Head to the Hill.” I hope you join us next year.

I saw that you returned to Washington to vote on the GOP health care reform bill. I hope that is just the beginning of your plunge back into the important work that you do.

Stand up for your fellow brain cancer survivors. Although many of us with brain cancer advocate for ourselves and others with the disease, you have a unique platform. The talk in Washington about replacements for the Affordable Care Act worry many of us with devastating diseases. I hope you will stand strong for protecting people with preexisting conditions, eliminating lifetime caps on benefits, and ensuring that medical coverage is accessible and affordable for all Americans. All these matter to me, a proud spouse and parent of three young children who are reeling from the their dad’s devastating diagnosis, loss of income, and the daily challenges of uncertainty, anxiety, and disability. I hope they matter to you, too.

Senator, you and I have family to envelop us and work to sustain us. May we continue to be motivated to speak on behalf of a community whose membership requires that we endure terrible circumstances to serve as public examples that individuals with disabilities, chronic or advanced illnesses, or grim prognoses have much to contribute toward the American experience as we choose to live publicly and face our diseases head on.

Adam Hayden lives with his family in Indianapolis. He blogs about living with brain cancer on Glioblastology.