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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  • I understand, 2005 i was diagnosed with colon cancer, took 24 inches out on the right side, then I incurred infection 24 days later, my wound had to heal from the inside out, took 4.5 months. And a wound vac. Machine, then 9 months of chemothetpy by pills, am still here, our daughter married 11-11-11, been married 5 years, have a 6 year old and almost 3 year old, her husband diagnosed with grade 4 glioblastoma 6-24-16, what a night mare this is, with young children, daughter e mailed President Trump, answered back nothing they could do to help with additional grant funds, said couldn’t do anything, I of course now have not continue to send funds to the President, this cancer is about grant money for dealing with the research, 22,000,000. Gos,,, to HA.Anderson, for research, that is 60% of the funding, more funds more people on board to cure this, wish you the most, my daughter care giver, mother, wife, and father, to bad they don’t give medals for this, good luck, Steve

  • Thanks much for your comments to John McCain (I embraced them for me, too!) My professional career was critical care nursing and I’ve recovered quite a few craniotomies for gbms and astrocytomas, so on September 14, 2016, I was given the options to deal with the tumor in my right temporal lobe (it was only the size of a peach pit), but the “crainy” and excess seizure activity robbed me of quite a bit of function (motor, visual, hearing, smell/taste) for a while. I had no warning signs prior to the morning my daughter who had just taken a CPR, stroke/MI class said “I’m calling 911, you aren’t yourself and I think you are having a stroke or something”. The only symptom I had until then was loss of libido and joy in listening to and playing music. By the time the EMTs got me to the hospital, I was seizing uncontrollably and required life support for several days. I urge everyone who is physically and emotionally able to take a CPR/health awareness and maintenance class.

    Now, regarding expectations and dealing with the “surprises” that come about, mostly keeping an open mind, asking for help when needed and appreciating those who support and don’t support you, even yourself. My physical therapy resulted in regaining vision (I have some peripheral blindness but that doesn’t keep me from seeing straight). My granddaughter (9 years old at the time) helped with my fine motor and visual recovery. We did jigsaw puzzles together and since my right brain was most compromised, I used only my left hand. I also listened to music and reconstructed scores in my head as I listened. My daughter and husband arranged and participated in all the speech, physical and occupational therapy and took me to appointments. My oncologist is hard core. I follow his instructions to the “T”. I started off in a wheelchair, transitioned to a walker, then a cane and now walk independently several days a week (up to 5 miles) The chemo and radiation therapy were completed after 42 sessions. I now can read, feed myself and like you, Adam, my family and I have read, researched and participated in as many activities as possible thus far.

    I’m only 71 yrs old in August (younger than Sen. McCain) and find that I have reasonable goals to work on: a more current class in Biochemistry, organizing a benefit for childhood brain cancer research, participating in more Defeat GBM activities — hopefully travelling to the gathering next May. Thanks so much for your letter to Sen.McCain. I find that and many other contributions on the ABTA uplifting and educational. I’m seizure and headache free now for 9 of the 10 months since my diagnosis and time spent on life support. I am also very grateful for the neuro-oncology team at the University of New Mexico Cancer Center.

    I do terribly miss my most recent work with intellectually and developmentally disabled individuals and find this to be more motivational than saddening as I know I can become a volunteer as soon as I’m able. They taught me to never lose my sense of humor. After all, “It’s all in my head, anyway”.

    Thanks again for your letter of encouragement, Adam and my best to all of the gbm/brain tumor family.

  • Admire your courage in dealing with your condition and your poignant letter to Sen. McCain.
    Wishing you much positive energy and love for a good fight and good days.

  • Here’s hoping that Senator McCain will take advantage of the time he has left to live life to the fullest. Glioblastoma waits for no one and it grows quickly invading all our senses. My dad, his youngest sister and my son have all succumbed to it along with a brother-in-law.

  • I was most touched by Adam Hayden’s article and reaching out to Senator McCain. I hope this will touch McCain and his colleagues sufficiently to fight for the ACA and sufficient healthcare for all, and not cave to the heartless and power hungry shadiness of Trump and McConnell and their insufficient cronies who seemingly can’t even get it together to agree on a lunch date.

  • Adam- what a beautiful and meaningful geature to share your experience and knowledge with Senstor McCain. Even legends need support during a time like this. I wish you well in your treatment and hope you have lots of precious time with your family.

  • Cancer prevention with eye drops containing dorzolamide
    Michael Lerman, Ph.D., M.D.
    Cancer causing Genes Expert,
    Laboratory of Immunobilogy, NCI, USA, 1980-2008,
    Board Member, Affina Biotechnologies, Inc., USA, present
    Email: lermanmi@gmail.com

    Cancer cells cannot exist without trans-membrane carbonic anhydrases, which regulate pH inside and around the cancer cells. For that reason inhibitors of CA9, CA12, and CA14 inhibit and prevent cancer growth. Late professor Thomas Marren, developed soluble preparation of sulfonamide/dorzolamide to treat and control glaucoma. I discovered that these inhibitors totally suppress these enzymes and inhibit cancer cell growth. Daily intake of this drug (1-2 drops in the eye or nose) is safe and would prevent/cure cancer. This is effective, not expensive and already approved by the FDA for topical application in the eye to treat and manage glaucoma.

    Daily intake of this drug (1-2 drops in the eye or nose) is safe and would prevent/cure cancer.

    • Dear Dr. Lerman,
      Why isn’t this information being given out by the medical field? My dad,his youngest sister, my son and a brother-in-law have all succumbed to this beast. We are in a National Study through the M.D. Anderson Cancer Center but it seems that the researcher has moved on and taken all the information with her, with the exception of one uncle we all had our blood drawn and sent to her. I have sent her emails but to no avail.
      I’m assuming that the sulfonamide/dorzolamide must be prescribed and if one doesn’t have glaucoma how does one justify getting/paying for it?

  • This is a wonderful article and I would add that many Vietnam Era Veterans have passed from this rare cancer. As long ago as the early 90’s continuing today these soldiers of war are passing away. Please help get Agent Orange on the VA Presumptive List and help all of us be served for the service and sacrifices made by our loved ones. Please.

    • Thanks for your comment, Cheryl Joy. I’d like to add to your comment on Vietnam Era Vets as I was exposed to considerable RF (radio frequency radiation) during that period (radar sites) and after becoming a nurse working at a VA hospital, my anecdotal observation was not only exposure to agent orange, but RF exposure during extended flight missions and radar site operators should be investigated further. The uninvited gbm in my right temporal lobe may have been caused or exacerbated by this exposure. I believe there is a clearing house data base with patient’s exposure to any carcinogens (possibly through the NIH).

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