D

ear 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.

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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

The author in a hospital recovery room, May 2016. Courtesy Adam Hayden

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.

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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.

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  • Adam Hayden, you are an excellent writer! I too have glioblastoma and I have a PhD and I am surviving 5 years and 8 months. The two wide awake surgeries have been done at UCSF by Dr. Berger.
    I have finally stopped working, which I had to dwindle over the years. Your description of me is correct: “Prepare for “the fog.” Glioblastoma often causes memory loss, trouble finding words, and a kind of mental fogginess.”
    May God and others bless you/and other glios.
    Thank you. Ann Wallace, Solvang CA

    • Dr. Wallace, many thanks for your comment, and thank you for reinforcing the “fogginess” of our shared conditions. We also share a passion for higher ed, and in fact, the decision whether to pursue my PhD continues to hang in the balance of my day to day emotions! Having completed a terminal masters I thought I was destined for PhD work, but following my diagnosis, I have left that question open. Anyway, back to matters at hand, thank you for thriving five years following your diagnosis! You are a role model for us newly diagnosed persons with glioblastoma! Cheers, A.

    • Thanks to all for your comments. My psychologist/counselor at UNM Cancer Center is a 23yr survivor of an astrocytoma and completed her PhD after diagnosis. The first anniversary of my gbm diagnosis is the 13th of this month. That’s when the neurosurgeon took the melon baller to the golf ball in my right frontal lobe. The recovery with Physical, Occupational and Speech Therapy has been a gift that I wish all could experience. Ditched the wheelchair Dec. 2016, the walker in January 2017, the gait belt in March and by then I could feed myself, read, smell, enjoy music (part of my therapy)cry, argue and use the left side of my body. On September 23, I plan to ride 25 miles in the UNM LOBO Cancer Challenge and I have to express my appreciation to the professionals and my wonderful support system for my progress. Best luck to you, Adam, on your journey to use humor as a resource for healing. Humor has been a very powerful resource in my progress as it was in my practice with seriously ill individuals and their families. I have some silly stories that I may share some day. Also, thanks to Dr. Wallace for your inspiration and blessings to all families and gbmers. My sense of humor keeps telling me “It’s all in your head! You’ve been “foggy” for years anyway”. I just turned 71 on August 29.

  • Some important news today concerning proton therapy, immunotherapy, etc. improving brain cancers. I feel really hopeful, there is new treatment on the horizon and you benefit from it. Keep googling everything you can, other countries are making great headway also. I am sorry for your pain and struggles. I wish they could take that part away. Pray hard every day for the cure to come quickly.

    • Doris, thank you for the encouragement! Yes, many positive clinical results coming from trial research for immunotherapies. And thank you for sharing your perspective. My wife and I have said, we are to live from one treatment breakthrough to the next until a durable treatment is found. Cheers, A.

  • Thank you for a beautifully written article. My grandson was diagnosed with a 6cc tumor 2 years ago (thank God everyday it was non cancerous) miraculously he has only mild memory/language issues. More than likely he will be on siezure medication for his life. The annual MRI’S, the annual neurological exams and annual visits to neurosurgeon are apart of our life. After his diagnosis I was shocked how many people have brain tumors and cancer. Not only adults but children. I joined a group called brain tumor warriors. The threat of preexisting conditions being non covered health care is outragous and a death sentence for many. Keep up the fight. I hope you forward all comments to the Senator we need all the support we can get. I am including you, all fighters of this fight and those who can no longer fight in my prayers. Bless you and your family.

    • Kim, many thanks for commenting and sharing your grandson’s story. Yes, we do settle into a new rhythm of life, don’t we? Appointments, scans, treatments, and so on, but you are also right that many of us are happy to adapt if it means continued survival. Thank you for keeping us all in your daily thoughts! Best, A.

  • I am amazed and horrified there are so many people with cancer, especially Brain Tumors…glioblastomas and others that are impacting so many people/families. Why are these so prevalent?? Very scary

  • What a great article! My husband also has a glioblastoma he’s 33 yrs old father of 2. 15 yr old son and 5 yr old daughter. I really hope they do find a cure I do not want any more families hit by this awful disease!

  • Thank you Adam for your letter. I lost my 20 yr.old daughter last December, but she fought to the bitter end. This is such a devil and her sister and I will dedicate our lives to research support and hope to find a cure. Please know our prayers are with you and your family. Keep fighting every day.

  • I applaud your insights. As loved one of a
    GBM casualty (Dad at 66 yrs, died after 39 days after diagnosis.) I like knowing that there are battles to be won, journeys to be shared. Sometimes all we have is a roadmap of someone else’s struggle. Knowledge is power, if nothing more than to know that you’re not alone. Strangers in the brotherhood and sisterhood of a horrible disease. My family and I respect your journey and appreciate your stories. Someone somewhere may be finding some measure of comfort in your words.

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