Glioblastology

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.

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.

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.

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.

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!)

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.
Health as Resistance

September 27th, 2019

We had been brought up to notice, to take “life as it is” and turn it on the spindle of compassionate action to make it more like “life as it should be.” This is resistance (Shem, 2002, p. 934).

When short term goals of care were achieved, I was discharged by my inpatient physical therapist, with a referral to continue therapy in an outpatient setting. During a month-long hospital stay, I graduated from a wheelchair to a walker; in fact, my first mode of transportation following brain surgery was a wheelchair equipped with a plastic tray to hold my weak left arm to prevent my hand from falling limp onto the spinning spokes of the wheels while clinicians transported me from my room to the cafeteria or the therapy gym.

Slowly but steadily I practiced shuffle steps between the parallel bars in the gym, using my hands for balance and added support. Then with a bulky knee brace to prevent my leg from hyperextending, risking damage to my knee, I scooted along with a walker. Finally, I was discharged with a cane to build up my mobility over time but instructed to use a walker around the house and use my wheelchair outside of the home.

Adam and his inpatient physical therapist practice walking, June 2016

Assistive devices are often associated with a decline in function and independence, but for me, walking only with the use of a cane was an achievement. Now, I cast my cane aside when playing outdoors with our boys, but summed up recently by Whitney when I jogged several paces, “well that was awkward.” Not to mention the last time I attempted to walk our energetic two year old, 55lb dog, he brought me to the ground. “Are you OK?!” A nearby neighbor shouted. “Yes, I usually have a cane…” I began, but I let the words fizzle out after realizing the explanation for a fit-looking mid-30s year old taken down by a happy dog required more than just “I usually have a cane.” I waved off the concerned neighbor and struggled to my feet.

See, there is life “as it is” and life “as it should be,” observes Samuel Shem, the pseudonym for doctor and author Stephen Bergman, whose 1978 cult classic House of God, describing the brutality of medical residency, continues to be a must-read for medical students. The book, following a class of young doctors beginning their art and practice of medicine, exposes the reader to the horrors of the healthcare system, but Bergman does so with dark humor. In a 2002 article, “Fiction as Resistance,” from which the epigraph for this post is taken, Bergman shares more about his commitment to fiction as a guide to understanding.

As it is, or as it was in the summer of 2016, I celebrated when I was able to transfer to the toilet without assistance, and how it should be, the recovery of my agency and independence to use the toilet on my own, and also, bathe, dress, and tie my shoes became my act of resistance to the locked brain trauma unit that was my home during this time of partial recovery. The content of my journals during this time serves as the foundation of this blog, but more than share my stories with others, my writing is (was) also my guide to understanding. Fact can be stranger than fiction, and Shem (Bergman) and I have at least one thing in common: our tools for examining the world are pen and paper.

“Other than my brain cancer,” I joke, “I’m in pretty good shape.”

As it is, I confront my health every day. Will I have a terrible headache? Do I have the familiar seizure onset symptoms, or “aura”? Does my left foot tremor when I set it down to take a step, signaling that fatigue will be problem? Does my head float, seemingly detached from my body?

I wrote a blog post recently addressing the “you might as well” sentiment: you have brain cancer, have some ice cream, you might as well. In that post I resisted the idea that serious illness affords an anything goes attitude. Paradoxically, perhaps, I suggest that the opposite is true: serious illness demands more rigor and discipline.

I rewrite my to-do list weekly, and I am happy to report, that list continues to fill with conferences, speaking, invited guest blog posts, and advocacy events. There is so much I have yet to accomplish: the book that is sitting incomplete on my laptop’s desktop, the three draft academic philosophy papers that need a little more attention before they are ready for submission, and the reformatting of my CV to seek more opportunities to tell my story.

My boys deserve the most able bodied dad they can get before his body falters and fails. Whitney deserves the maintenance of my health for as long as I can sustain before her spouse and care partner roles continue to bleed together.

What if the most punk rock thing I can do is get a good night’s sleep? What if rebellion in the face of illness is to decrease or eliminate those extra glasses of wine? What if my greatest act of resistance to terrible disease is prioritizing health?

Health, as resistance.

What if that’s how I take life as it is and make it more life as it should be? What compassionate actions might you take? What gap between “is” and “should be” will you close? What is your greatest act of resistance?

Shem, S. (2002). Fiction as resistance. Annals of Internal Medicine, 137(11), 934-937.
“You’re building your ark.”

September 5th, 2019

We sat down as a family on a Friday night to have pizza and watch a movie.

Whitney teaches yoga three nights each week, Noah and Gideon have weekly soccer practice, Isaac wrapped up karate class just as his Scout pack kicks off another year, all of the boys have a weekly Little Ninjas class that meets on different nights, Noah and Isaac are bringing home nightly homework, and I co-lead a monthly Twitter chat and monthly virtual support group that meets on the first and third Sunday evenings, respectively. Gideon is off to half-day preschool three mornings each week; otherwise, “Little Adam” is my buddy, at my side most other days.

I am the stay-at-home parent, including the usual housework, and I am the cook. I fit in time to work on two part time jobs–one as an instructional designer with my supportive employer, Briljent, the other, a research assistant for the department chair and professor of philosophy of science at IUPUI. At least once each month, sometimes more, I serve as a guest lecturer in classes at both Indiana University School of Medicine and the IU School of Liberal Arts at IUPUI. I try to protect time for daily writing.

Whitney leaves for her day job at Eskenazi by 7:00 most mornings, and many evenings she doesn’t have time to stop by home on her way from her day job to the yoga studio. She recently started as a part time occupational therapist for the Center Grove school district, working with elementary age kids with developmental disabilities. Yes, that brought her number of jobs to four!

Because I do not drive as a result of my brain tumor related epilepsy, we rely on the support from our extended family to get everyone where they need to be. For our family of five, this feels like organizing a conference every week.

Our crew! Family picture May 2019. Photo by: Adam Ramsey (https://www.adamramseyfilm.com)

Does this sound like your family?

Our cultural norms, in the Western World, and especially in America, lead us to derive our personal worth from notions of productivity and earnings. We often lament how busy we all are, yet we continue to measure our status by the number of things on our plate.

As our boys get older and more independent, the daily wrestling match to change out of pajamas and dress for their day is getting easier, but changing diapers is traded in for monitoring screen time. Reading books at bedtime is replaced by checking homework and setting out clothes to ease the morning race to the bus.

Friday night.

It’s one night that we work hard to protect for our family.

Last week, we decided on Evan Almighty as our best bet for a movie that would hold the attention of our eight, five, and four year old, and that would give me and Whit a break from YouTube videos of other families–parents or guardians of young kids, you know what I mean.

The movie stars Lauren Graham as the patient and thoughtful spouse to Steve Carell’s character, a recently elected member of Congress who is visited by Morgan Freeman, playing God. Freeman instructs Carell to build an ark, and in the process Carell transforms into a kitschy pop culture Noah-like character.

In the face of the seemingly delusional Carell, Graham’s character decides to leave Carell (only to return later; Hollywood drama). I turned to Whitney, aware of my own seemingly delusional philosophical study, that I left a successful career ten years ago to pursue, and now I spend my days reading phenomenology, and writing blog posts.

I thanked her for not leaving me.

“You’re building your ark,” she said.

In the tradition of scholars and writers like theologian Marcus Borg and mythologist Joseph Campbell, we are reminded that stories need not be factual to be true. Certainly, the Noah story is just such a non-factive “truth.” To interpret what this story means, we must better understand the historical and political climate that shaped the narrative. What it means to me, more poignantly, what Whitney’s comment means to me, is an affirmation that trust, family, community, cooperation, resiliency, embracing absurdity, and pursuing goals are touchstones of a meaningful life.

“I am so busy.”

“I have a lot on my plate.”

I am just as guilty as you are, using these replies and remarks as surrogates for real self worth. As excuses to not pursue what matters most to us. As distractions and obstacles we hide behind to avoid dedicating ourselves to the hard work of going against the grain. The terrifying work of challenging the status quo. The risky work of saying “no,” and protecting time for self-work and family connectedness.

We are all works in progress.

We all must make our meaning; find our authentic self-worth.

We must build our arks.

We cannot do it alone.

Clear your plate, and let’s get to the really valuable work.
The sick role

August 22nd, 2019

Last week Whitney and I launched a GoFundMe campaign, and we published our needs to the community with this blog post. We reached our goal within hours of the post, and in the following days, we doubled our goal. We are incredibly thankful for the amazing community that continues to support us, now in our third year facing brain cancer. We received generous contributions from all areas of our lives! The Facebook community of friends and family shared our campaign almost 60 times! On Twitter, the home of my academic networking, many of our followers retweeted the blog post and contributed. On LinkedIn, despite it being the social platform where I am least engaged, we managed to drum up support after a friend and healthcare professional shared the blog post, calling it a “must read.” For the generosity and social awareness, thank you does not adequately express the months, if not years, of easier breathing our family will experience after your selfless giving. Thank you.

I am most humbled by the fellow patients, care partners, and widowed members of our community who left comments and shared posts explaining that our family’s financial struggles, though painful and contextualized to our circumstance, are nevertheless common to nearly everyone facing serious illness and advanced cancer. When I manage to capture in writing the experience shared by so many others, I am reminded of my strengths and the privilege I have to raise my voice. The call was to help us financially, and we thank you for that, yet what I carry with me are the thanks offered by others for explaining financial toxicity in an accessible way.

In the 1950s a sociologist named Talcott Parsons described a concept he called the “sick role.” According to Parsons, people who are ill have both rights and responsibilities. The rights are to protect the dismissal from normal functions in society, while the responsibilities of the ill are to partner with healthcare professionals in an effort to get well.

Illness is a social deviance, according to Parsons. Deviant because the seriously ill are no longer meeting the expectations of their assigned social roles. And so while not responsible for their illness–not blameworthy for illness–the seriously ill operate under an umbrella of sanctioned deviance. Deviance that is policed.

I was discharged from the hospital after deemed medically stable after brain surgery. I was transferred to an inpatient acute rehab facility, where I started in a wheelchair. I was discharged from the inpatient facility able to walk with the use of assistive devices. While inpatient, my bed and wheelchair were outfitted with alarms that would alert staff if I tried to get up or transfer on my own. I rang the call button if I had to use the toilet. For weeks I had someone standing with me in the bathroom. Policed deviance.

These days, I work part-time, but I report my earnings every month to two different agencies. I undergo medical review annually. We submitted a “doctor’s note” to lobby the school transportation office to allow a bus stop in front of our home so I would not need to navigate potential weather conditions to walk the several houses to the assigned bus stop. I am offered the occasional honorarium (a one time payment) for speaking in conference settings, but rather than thank the organizers and take pride in my work, I complete paperwork to account for my earnings.

This is policed deviance. This is the sick role, some sixty years after Parsons introduced the concept.

Our algorithms saturate social media feeds with targeted advertisements, but our health and insurance systems are unable (or unwilling) to take readily available data, such as the nationally standardized diagnosis codes (ICD-10) to drive decision-making logic that, for example, excludes people with terminal illness from medical review.

I answered a call from my long term disability provider just this week with the question prompt, “What more support do you need from us to get you back to full-time hours?”

Curing my brain cancer would be a good start.

I conclude this post with where I began: Thank you for the generous outpouring of support you showed our family these past two weeks. We are profoundly impacted by your generosity, and all of us are enjoying a better, more peaceful home life as a result of your giving. We stand a chance now of actually getting back on our own two feet–or two feet and a cane, whatever. Our kids continue their activities. Whitney may be able to step away from the several “pick up days” she takes at work. Thank you, thank you.

Still, there is the nagging reality that our deviance is sanctioned, our freedom is policed, and so beyond the existential threat of serious illness, there is the threat of regulatory authority that could take away our protections at any time. That threat may only be met through civil, honest dialogue, and a commitment toward protecting the rights of others. But rather than view people with illness as deviants who must be policed in their dismissal of social roles, how might we lift up the experiences of the seriously ill to teach us all something about humanity? About how to live each day? About insurance and healthcare and what “work” is rewarded. How might we elevate serious illness rather than police it?

We have more work to do.