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

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.

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.

  • Dear Adam Hayden
    I thank you for writing such a profound letter to the Senator.
    My name is heidi lawler and I have the Philip lawler glioblastoma foundation in California. I am partners with USC Keck medical school and together with my fundraisers we are working very hard on a cure for this hideous disease. The money goes directly to research at the USC glioblastoma dept under the care of prof Chen. I hope with all my heart that we can make a difference in helping to eradicate this cancer.
    I wish you the very best and hope that the treatment you choose is helping you
    A big hug for you and your family
    Heidi Lawler

  • I am so blessed to be doing well physically, and quite well mentally after nearly 24 mos!! Reducing stress and staying active along with prayer following an amazing surgery have worked for me

  • Thank you for sharing. My husband was JUST diagnosed with GBM 3 weeks ago – a LARGE tumor on the left side (worse for some reason) sudden and overwhelming decrease in cognition, vision, speech, etc. 1 month’s COMPLETE loss of all of this! He’s never had a sick day at his company for 33 years, he was so proud of this, and now he is suddenly disabled. I am scrambling – are there support groups?

    • My heart goes out
      To you all! My husband was diagnosed in June 12,
      2017! It helps to talk to someone who understands! I am offering to be a text/phone buddy to anyone who needs it….I also think it will help me

  • My name is Viorel Nitica. I was recently diagnosed with glioblastoma and was operated March 1-st 2018. I am doing now radiation therapy and chemo-therapy. My health insurance refused to pay for the best radiation therapy currently available, Proton therapy. This is much better, as allows for better targeting and saves health brain cells. Currently I feel quite well, besides the stress due to the need to cover the medical bills (>150000). The covering of this therapy is now law in several states (Oklahoma etc). It has to become a federal law.

    Thank you for the opportunity to advertise and advocate for this therapy. More needs to be done by politicians to fight these deadly diseases.

    My best wishes to all people in this situation.

  • My father was just diagnosed in December with a gliloblastoma. He’s 66 years old, just retired a year ago and has/had zero medical problems in his life. This hit us like a train to say the least. Everything that you are saying I am preparing for and I hope that my father can live longer than what the Drs. are saying… it’s a looming cloud to hear 12-15 months. His neurosurgeon was able to remove about 98% of the mass and he is currently doing chemo and radiation (2nd week in). It could be far worse. He could not be walking, speaking, eating, thinking, ….etc. So far though he has high spirits and he is just a little fatigued here and there.

    How are you doing now Adam at present date? Have you thought about any clinical trials or anything like that. Prior to this happening with my father I never knew or heard of a glioblastoma nor even considered having a family member go through cancer. I wouldn’t wish this on anyone if I’m honest. It does sadden me how aggressive this type is and how meek the eventual outcome will be. But… life is a journey. There is always a bright side to things and as we all know. We will all disappear eventually. Ideally we’d like to control that, but the more I sit and think the more I realize this is something that is not up to us. When it’s our time, it is our time. Be thankful that you are here now and with family. I personally feel it would be more of a shock to suddenly pass and people’s hearts would be heavy because of the “didn’t spend enough time, or didn’t talk to them on the phone more” scenario.

    Please update us. My heart goes out to anyone with this disease and I hope that eventually they find out why and how to destroy this. Cancer sucks.

    • Nigel – my healthy, 59-year-old husband was suddenly diagnosed with this but it is so much more advanced….Huge left – side of the brain tumor, extreme loss of memory, vision cognition….

  • God bless you…will be praying for you and your family.
    My initial onset of glio was 10/29/16. My second 10/28/17. Surgery to remove tumor followed each time. Now doing stereotactic radiation…had 30 single rounds last year…this time 3. The tumor has shrunk enough that they can do this new type of radiation. The smaller the tumor the more radiation can be given.
    My diet is organic and I use many antioxidants to also build the immune system (after much research.) I know the Lord hears my cries and will continue answering according to HIS perfect plan and purpose. I don’t understand but I trust in HIM alone and praise Him continually. HIS ways are perfect.
    I have many testimonies. If you would like to talk I can be reached at 906-485-5010

    Psalm 18:30 – As for God, His way is blameless; the word of the Lord is tried; He is a shield to all who take refuge in Him.

  • Adam, I am a 57 yr. old man living with the memories of my dear friend Carol Mathews who I helped cared for after she was diagnosed with Glioblasoma multiforme a few yrs. back.
    The information put forth in your suggestions to the Senator are spot on.
    I understand everything you and your family are going through, having lived through the exact experiences you’re trying to convey to Mr. McCain.
    Although my friend Carol lost her battle to this ugly disease, I can attest to the fact that your advise is probably the best and most honest I’ve ever heard.

    Mr. Hayden, if you’re still able to read and comprehend, you may find my friend Carol’s blog “Catch Meadow Cottage” an interesting read.
    In short, Carol was a single mom with two children who pulled her life up by the boot straps and finally got to a place of serenity when Glioblasoma made a collision course with her life.

    I wish you and your family the very best in dealing with your situation.

    God bless you all.

  • Thank you Adam for your investment in the cause to give encouragement and information to GBM sufferers. I have had a large portion of mine removed. I have gone through radiation and chemo (tamazolomide) and while given 6 mos in 2016 I have survived over a year so far and I have had a very good quality of life doing everything I did before. Fatigue was the greatest problem
    So thank you for your work. Mike Scibetta. Griffin ga

  • My wife died on July 31st 2017. She lived exactly 1 year and 2 weeks. This cancer is unlike anything you can imagine

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