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Glioblastology

  • To handle distress: Do as much You as possible

    March 23rd, 2020

    “Today you are You, that is truer than true. There is no one alive who is Youer than You.” ― Dr. Seuss

    I’ve read many great articles about homeschooling, setting up the optimal space for working from home, and activities to engage kids during long stretches indoors. Online fitness classes are easy to find. Bands are streaming sets online, and Netflix rolled out the very cool movie night watch party feature to connect with friends virtually. Many employers are scheduling recurring “coffee meetings” to bring their remote employees together. Universities have shifted in-person instruction to online lectures.

    These are all incredible changes that happened within a matter of days! We should be encouraged by these moves to act in a unified way to protect the health of our communities. Still, we have plenty of work to do to reinforce adherence to CDC guidelines, and it would serve each of us well to heed the advice of epidemiologists and healthcare workers–like my wife–who are sharing their experiences from the frontlines.

    This post is not to reiterate those cautionary tales, and I do not want to repeat the terrific resources that so many have made available.

    Instead, I write this post to address one fundamental question: How do we feel normal, when so much around us is changing?

     

    Over three months, beginning in May 2016, Whitney and I reacted to the news that I was diagnosed with the aggressive brain cancer, glioblastoma. With this diagnosis we were confronted with my mortality: the dismal five-year survival rate for GBM is less than 10%. Yet this existential threat to my survival, Whitney’s husband, the dad to our kids, was only the tip of the iceberg. Just beneath the rolling waves of serious illness was a greater threat: the complete disruption and reorientation of our lives.

    In short order, I stepped away from my full-time career working in learning and organizational change management, Whitney stepped away from her full-time position at the hospital to care for me and our boys, and she shifted to a variable schedule, with enough hours to maintain benefits eligibility, requiring that she commit to working every weekend; we sold my car because my persistent seizures made driving a risk to myself and others, and we sold our condo both because the second-floor walk-up was incompatible with my limited mobility following surgery and the mortgage seemed impossible to maintain after losing my salary.

    By Fall 2016 our lives were barely recognizable to what they had been only months before.

     

    I share this because the disruption and the reorientation of daily life may feel a lot like what you’re facing now in response to social distancing and other mitigation or suppression efforts to slow the spread of the novel corona virus or covid-19.

    I want to offer the advice that I give to newly diagnosed patients and their loved ones who reach out to me through this blog or through Twitter.

     

    I am frequently asked this question by newly diagnosed folks who must reorient their lives in light of serious illness–usually for those reaching out to me, the diagnosis is brain cancer, but I think the advice generalizes.

    Imagine that you walk into an office visit with an oncologist, and you walk out with the information that your life expectancy is now measured by reference to “median overall survival.”

    This is not unlike the news all of us are reading today, in light of covid-19. Our communities, the number of presumptive cases, the exponential logarithms that predict “points of no return” to exceed hospital capacity, and the predicted mortality rates, both mortality for covid-19 but also mortality rates for other life-threatening events like heart attack that are increased because hospitals reach capacity and clinicians and beds are unavailable, this news is a difference in degree, not a difference in kind, from the one-on-one giving of diagnosis between a doctor and those within their care.

    “Adam,” I am asked by folks facing cancer, “What now?”

    In simple terms, this is my response: Get back to doing something that feels like “you,” just as quickly as you can!

     

    In the hospital after brain surgery, and then in an inpatient rehabilitation hospital where I re-learned to walk, bathe, feed, and dress myself, very little of my life looked like the guy who dribbled a soccer ball outside with the kids or littered the countertop with books and journal articles to write papers for grad school.

    I was on a locked brain trauma unit. I was using a wheelchair. My family could only visit on limited hours. Even the clothes that I was used to wearing didn’t fit because my body had swelled because of high-dose steroids to control brain swelling.

    But I could read, and I could write, and I could continue working out the details of the philosophy of science literature I had studied in grad school.

     

    Clearly this is a niche market! What feels like you may look nothing like this! But what’s important is that feeling like my life was totally disrupted, I could reclaim some of the activities that felt normal; that felt like me.

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    Adam journaling days after brain surgery, late-May 2016

    So as you scroll past the alarmist articles, please for your health and the health of our communities, be informed and take action! But if you’re feeling overwhelmed and distressed; if you’re feeling like nothing is normal. If you stare at yourself in the mirror and wonder, “What now?”

    Try doing as much you as  possible, and you may find that when the world is disrupted and you must reorient your life, you can trust that your values, goals, and purpose will carry you through.

  • My wife, on the front lines

    March 20th, 2020

    Breathless.

    What time is it? It feels early.

    Are my contacts in? My left eyelid feels gummy.

    I reach for my phone.

    Thud.

    It knocks the side of the wooden bed frame.

    Hot breath. Humid. Which child is pressed against my back?

    I reach and grasp for the wire of the ear buds and grip the thin rubber between my index finger and thumb, and I slowly pull the phone toward my body; deliberately; careful not to pull the ear buds from the plug on the phone.

    5:22am.

    I scroll notifications with my thumb and nudge the sleeping child toward the center of the bed. Eyes close, and I wake to hear her alarm sound. The gurgle of the coffee maker comes next. I slide from beneath the covers and tug the pillow to replace the form of my body beside the sleeping child.

    I creep quietly to the kitchen, toward coffee and morning email.

    Her silhouette shifts the shadows from the hallway until her navy scrubs come into view. I smell the daily lotion that lets me know she’s close. Her hair is damp.

    The metal tumbler rings as I bring her clean Yeti from the dish dry rack onto the cheap laminate countertop. I step to lean my slinking basketball shorts and thin butt against the sink and hunch over my phone with a warm glow illuminating my face. The warm mug radiating in the opposite palm.

    Her lunch is packed with whatever leftovers we cobbled together from the previous day.

    “We need to be more careful about wasting food, guys,” she scolded the boys the night before, “We’re entering a time when we may not be able to get as much fresh food.”

    Her slip on sneakers for the commute to and from are kicked aside on the doormat inside the garage. They are not permitted to enter the house.

    She leans in to kiss. Embarrassed by my morning breath, I nod my head low, and she kisses my forehead.

    “Good luck today.”

    She nods.

    Then it’s later.

    10:13am.

    My phone dings from the charger. The younger two kids are running through the house, throwing pillows, and dragging blankets from each bed to a pile in the living room.

    Another ding.

    The text is from my wife, on the front lines.

    I can’t wait for her to come home.

  • 2020 Tumor Takedown Tailgate

    March 1st, 2020

    It’s that time of year!! The Third Annual #TumorTakedownTailgate to benefit National Brain Tumor Society!

    Join us Sunday, April 19, 2020, 3pm-6pm at restaurant Revery in Historic Old Town Greenwood, Indiana to tailgate to benefit brain tumor research!

    Get your “early brain” tickets beginning today, March 1st, 2020, for only $40! This general admission ticket gets you into the event with emcee Lauren Casey from RTV6, plenty of local beer including our premier vendor Mashcraft, food provided by Chef Mark Henrichs and the Revery team, participation in our silent auction with packages from Hope Plumbing, Indy CD & Vinyl, and more, and local music.

    Tickets increase to $45 beginning April 1st, so get on board early!

    Early brain tickets are available here.

    We also have a new way to give this year! Starting today we’ve launched a two week, limited run fundraiser with Custom Ink for #TumorTakedownTailgate trucker hats. These trucker hats from recognized classics brand Yupoong are only $25 with proceeds benefitting National Brain Tumor Society. Act quickly because the fundraiser closes on March 14!! Buy before it closes, and you can rock the TTT trucker at this year’s event or wherever you go to let people know you are raising money to cure one of the most deadly cancers.

    By the hats here before March 14!

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    In our first two years we’ve raised nearly $40,000 for National Brain Tumor Society’s Defeat GBM initiative, now in its third year of a five year commitment to put $10M toward research for glioblastoma. This research extends and enhances the lives or GBM patients like Adam, our tailgate event co-founder.

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    Thank you to our generous gold and silver sponsors!! The BlakeStrong Bowell Fund, the Luminous Fund, Bookends Financial Planning, Hope Plumbing, and Stadium Goods.

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    See you at the Tailgate!

    Logo designed and created by Gabe Granger. All photos by Adam Ramsey.

  • Glioblastology: 2019 in Review

    December 27th, 2019

    “How do you live, when you know your time is limited?”

    This is the question that I faced, beginning in the summer of 2016, after being diagnosed with brain cancer. It is the question we have faced, Whitney and I, in our marriage, and it challenges how I spend my time as a parent. It is the question just beneath the surface of every interaction with family, friends, and work colleagues. This is the question I have in mind during each required call, email, form, and document submitted to fulfill the clerical and administrative responsibilities of a person receiving disability benefits. It is the question that leads me to second-guess the decisions that I have made this year. But it is also the question that prompted a successful year of new accomplishments.

    In 2019, I answered this question with one word: purpose.

    How do you live, when you know your time is limited?” You live with purpose. And this answer presupposes that you’ve done a little personal heavy-lifting to discern just what that purpose is in your life. In this way, my life is just like yours, purpose-driven living is an integral part of a meaningful life. But I also remain committed to the idea that while relatable, serious illness is not “I could get hit by a bus” rhetoric. Folks do not wake up each day with a bus on their mind. Folks are not reminded every few weeks of the bus by another friend facing cancer recurrence or an acquaintance entering hospice.

    So that is the salient difference: we all make sacrifices to pursue our goals, and we all live with uncertainty; we are all grateful for a spouse, partner, or companion whom supports us. Our lives are fulfilled when we face challenges and achieve new milestones, but we shouldn’t lose sight of the opportunity costs, and for me, I feel the pressure of high stakes. So I pause to take stock this holiday season to share proud moments from this year, and I thank my wife, our family, and our supportive community for enabling my busy year of travel, writing, and speaking.

    In community, a.

    ***

    The year began with several collaborative projects. In January, I partnered with Cancer Health to contribute to their “Cancer Diary” series, with this “Brain Cancer Diary.” I was interviewed by Kimberly Paul for her Death by Design podcast, an interview that would air during season three of the podcast, in August of 2019. February brought continued involvement with the Brain Cancer Quality of Life Collaborative, a multidisciplinary research network investigating palliative care intervention in brain cancer. And I joined the project advisory council for the Count Me In Brain Cancer Project. I also guest spoke in a Bioethics course, where I am a regular fixture, with IU School of Medicine. I was proud to see my book review of Neuroexistentialism published with Polyphony: Conversations Across the Medical Humanities.

    In Spring of this year, with Whitney, our best friend Lindsay, and Revery chef/owner Mark Henrichs, we raised over $21,000 to benefit National Brain Tumor Society in our second annual #TumorTakedownTailgate, bringing our total after two years of the event to $37,000 (Stay tuned for details for this year’s 2020 event!) In May we celebrated with our NBTS family when Whitney and I attended our third Washington D.C. advocacy day, Head to the Hill. At this year’s Head to the Hill event I joined my friend Liz Salmi to give remarks in support of the Palliative Care and Hospice Education and Training Act (PCHETA), a piece of legislation that now sits in the Senate for passage. My co-facilitator Lisa O’Leary and I also announced the start of the first ever National Brain Tumor Society Virtual Support Conversations, a monthly, virtual, peer-to-peer support network for the brain tumor community.

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    Also in the spring of this year, I was honored to give remarks with our camper “Cheese Pizza” at the 2019 Camp Kesem Ball State Make the Magic gala. You can read my remarks here. In this same spirit, my friend and scholarship founding donor, Jack Hope, awarded the second Adam Hayden Philosophy Scholarship to a deserving student in the School of LIberal Arts at IUPUI.

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    My summer began with a trip to Chicago where I served on a panel moderated by my friend and End Well Foundation founder, Shoshana Ungerleider, MD, hosted by MATTER Health, discussing aging in the digital age. MATTER wrote up a great post about the event. The summer continued with the first ever Glioblastoma Awareness Day. In August I facilitated a “lunch and learn” session for my employer Briljent, enabling patient-centered care in Health Information Technology sectors.

    This Fall has been the busiest one yet, and I couldn’t have made it through without my parents and in-laws providing tons of overnight childcare, and Whitney guiding me through travel as I struggled with fatigue and seizures. In September I guest spoke in another IU School of Medicine elective course where I visit annually called, “Issues and Advocacy in Medicine.” I gave an Ignite! Talk at Stanford University’s Medicine X conference, and I was on the road again in October where I gave a grand rounds talk to the neurology service at Saint Louis University hospital, and I facilitated a breakfast roundtable discussion with the SLU bioethics PhD candidates, faculty, and staff.

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    I was proud to see my second invited review published with the prestigious magazine, Science. I reviewed a great book on the ethics of gene editing called Altered Inheritance.

    In November I organized a film screening and panel discussion of the Oscar-nominated documentary, End Game, and I served my third year as a patient-reviewer for the Peer Reviewed Cancer Research Program, a grant funding organization within the Department of Defense. I also traveled to D.C where I gave remarks to researchers, clinicians, industry, and the FDA at a “research roundtable” organized by NBTS.

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    This year capped off with my highest profile talk, and one that I’ve dreamed of giving since shortly after my diagnosis: the End Well Symposium, in San Francisco. With 650 attendees in the theater and 2,000 viewers of the livestream, I was honored to share my message about “Living while Dying” with a broad and diverse audience. (Stay tuned for a video!)

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    And that concludes the round-up of my biggest accomplishments in 2019. Between trips and talks I tried to take care of my body. Each week on the road, takes two or three to recover, and headaches, seizures, fatigue, and bouts of nausea are mainstays, but drawing from Whitney’s strength and seeing the joy and energy in our kids’ eyes, I’m out to leave a legacy for them and to hopefully improve the world for my brain tumor community.

    Cheers to 2020! I have some big things planned, and I cannot wait to share them with you!

  • An Evening in Partnership with the End Well Foundation

    September 30th, 2019

    Film Screening and Panel Discussion:

    Sunday, November 3, 5:00pm, Thunderbird in historic Fountain Square, you are invited to a free public film screening of an Academy Award nominated film followed by a panel discussion that places researchers, doctors, and patients in dialogue with the public in an informal, come-as-you-are setting to talk about the end of life! Panelists represent perspectives on death and dying, from Medicine, Medical Humanities, Philosophy, Religious Studies, and Theology. We want to talk about how we may end well to learn more about how we may live well!

    Register here! Check out the Facebook event page here! And read on for more details, including a summary of our incredible panel!

    Writing for The Atlantic, Erika Hayasaki (2013) declares in her article of the same title that death is having a moment. Death positive movements, including Death Salon, Death Cafes, and the End Well Project usher conversations about death and dying out of the shadow of taboo and facilitate dialogue to urge event attendees and participants to think critically about humanizing the end of life experience. You are encouraged to think about the end of life to inform how you live fully each day, and ultimately, how you might end well, in alignment with your values and goals.

    The event is hosted by Adam Hayden, a young dad, husband, philosopher, and a seriously ill patient, facing a life-limiting brain cancer diagnosis. Adam is a 2019 End Well Symposium speaker, an annual event, with the goal to create a cultural shift to normalize conversations about mortality throughout our life.

    The event features Academy Award nominated documentary End Game. This film follows hospice and palliative medicine clinicians as they facilitate end of life experiences with patients and families. End Game weaves together three stories of visionary medical providers who practice on the cutting edge of life and death, helping to change the way we think about both.

    The Fountain Square restaurant and bar, Thunderbird generously agreed to host the event to de-institutionalize these themes and create a come-as-you space for public engagement.

    The event will be held on Sunday, November 3, 2019, from 5:00pm – 8:00pm. The event is free and open to the public, but attendees must be 21+. Thunderbird is offering their menu available for purchase. Thunderbird is located at 1127 Shelby St, Indianapolis, IN 46203.

    The event kicks off with a “virtual” event welcome from the film’s executive producer, Shoshana Ungerleider, the 40 minute film will be screened, and Adam will moderate a panel discussion with audience questions. Everyone is encouraged to hang around after the panel to mingle.

    An amazing interprofessional group of panelists include:

    • Emily Beckman, PhD, Assistant Professor of Medical Humanities and Health Studies (MHHS) at the IUPUI School of Liberal Arts and Adjunct Professor, Department of Medicine, at Indiana University School of Medicine
    • Andrea Jain, PhD Associate Professor, Department of Religious Studies at IUPUI School of Liberal Arts and editor of the Journal of the American Academy of Religion (JAAR)
    • Lyle Fettig, MD is Assistant Professor of Clinical Medicine at Indiana University School of Medicine, and he is Director of the Hospice and Palliative Medicine Fellowship program at Indiana University School of Medicine
    • Adam Hayden, MA is a co-investigator for The Brain Cancer Quality of Life Collaborative, an American Association for Cancer Research scientist-survivor program participant, and a Stanford University Medicine X ePatient scholar
    • Anastasia Holman, MDiv, MBA, ACPE Cert Educator, is Manager of Spiritual Education for IU Health System at Indiana University Health
    • Shelley Johns, PsyD, HSPP, ABPP is Adjunct Assistant Professor of Psychiatry, Indiana University School of Medicine, Research Scientist at the Indiana University Center for Health Services and Outcomes Research, Regenstrief Institute, and a Board Certified Clinical Health Psychologist at the Eskenazi Health Palliative Care Program

    Please join us over a drink for this incredible film and critical discussion to follow.

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