Surviving to bear witness

Sunday, June 10, 2018 marks two years after Whitney and I were transported in a wheelchair accessible van from an inpatient acute rehab facility to the IU Health neuroscience center. We sat in my neuro oncologist’s office and received news of my glioblastoma diagnosis. A kind, compassionate nurse who would become more than a member of our care team, but also a dear friend, held each of our hands.

 

I am unsure of what to say on the day of this important milestone, but I am compelled to offer a few words–really, the task of this blog.

 

I published my first post to this blog in October 2016. The staff physiatrist discharged me from inpatient rehab four months prior, and I received the GBM diagnosis only weeks before that discharge. In October 2016, I recently completed a six-week daily chemo and radiotherapy protocol, and I began the ‘maintenance’ chemotherapy cycle: five days, high-dose chemo, followed by 23 days off, and repeat.

 

I struggled to settle into a rhythm and direction for this blog.

 

Early posts revealed a thinking-out-loud style of scientific explanation, connections with philosophy, and personal narrative about a young man, husband, dad, brother, and son, internalizing a devastating cancer diagnosis. I wrote many posts with an aim in mind that never fully materialized. Posts proved too scientific for casual readers, too flimsy for academics, and too personal for many friends. I continued to write, striking a chord with some here and there. Often the reader thanked me for keeping everyone up to date, among other encouraging remarks, noting my positive attitude, vulnerability, and bravery. On the latter, I call up Abraham Verghese writing the Forward to Paul Kalanithi’s, When Breath Becomes Air. Verghese (roughly) remarks, “how brave it is to reveal yourself in this way.”

 

If there is bravery to recognize, it is rooted in my vulnerability.

 

In July 2017, nearly one year after our trip to the neuroscience center, news broke of Senator John McCain’s diagnosis. I was first notified in a tweet (a “mention”) by an academic colleague. I wept. I wept for the Senator and his family, for me, and for my family. I wrote an open letter to McCain to be published in medical journalism outlet, STAT News. The letter received an overwhelming response from people affected in one way or another by GBM, including newly diagnosed patients, others living with the disease, care partners of those with the disease, and relatives of people with GBM who died.

 

Article comments, increased blog traffic, and a full inbox signaled that my commitment to continued writing and posting found an audience. That audience, my audience, includes those closely impacted by this disease. Comments and emails expressed an important and instructive theme: people seek to tell their stories and impetus to do so may be triggered when people share a common suffering. GBM is diagnosed in three people per 100,000. This qualifies GBM as rare. Compare GBM incidence to breast cancer, which is diagnosed in one person per every eight. Nearly 300,000 people are diagnosed annually with breast cancer, contrasted with 14,000 cases of glioblastoma.

 

Consider the disparity in incidence rate.

 

I note these statistics only to emphasize the reality that if you’re looking for a resource to discuss your illness experience, the peer population is disproportionately small contrasted with the horror of the disease, for those with rare diseases such as GBM.

 

It is an honor to receive and reply to emails from people impacted by GBM. Many of these patients and care partners are now friends. Sadly, I have heard from loved ones about the death of people I emailed with frequently. It is a sample size of a population dying in the thousands each year; nonetheless, these are deeply personal losses. I am humbled to consider that in the final weeks, maybe days, before death, I was in active dialogue with a (now) late friend. I thank the loved ones who exhibited vulnerability, hence bravery, to open an inbox, to read email conversation threads, and to inform an unknown person on the other end of an optical fiber cable their loved one is now gone.

 

After living with this disease for two years, I extend my deepest gratitude to those who follow my journey. Thank you. We mark this milestone together.

 

To the patients and care partners who look to me for next steps in their own journey, or to reflect in the rear view mirror to recall and process their own experiences, I mention the broad range of experiences shared across a rare disease population, but notice each is unique to the individual.

 

Telling our stories to each other, to our social circles of influence, and to our clinicians is an effective way to locate our agency, that is, to discover those outcomes for which we may exercise control, amidst a disease and circumstance for which an abundance of variables exist outside of our control. Expressing our experiences through storytelling is  an effective means of establishing a supportive network who endure the journey alongside us, and yes, to celebrate our milestones.

 

It is a fitting conclusion to say a few things about where I am today. The reality is when given a life-limiting diagnosis like GBM, everything changes, yet, surprisingly maybe, nothing changes. I am still uncertain of which alternative is favored: for all to be different or a return to the familiar.

 

Frustratingly, maybe, but not uncommon in spaces between such tension, the answer lies in the middle.

 

Many think, mistakenly, by my judgment, that a life-limiting diagnosis affords an opportunity to sort out priorities and pursue “what matters most.” For many, physical impairment, cognitive deficit, decreased life expectancy, and financial toxicity limit the pursuit of new or revised priorities and mythologized bucket lists.

 

What is different is the perspective that must be adopted. You still must do the laundry, but you fold the shirts with acute knowledge of your own mortality.

 

Two years following my diagnosis, the Adam that existed pre-diagnosis is dissimilar from the Adam, now two years on. Though, these historically competing personal identities are far from strangers. I continue to enjoy coffee with former faculty and friends, I recently submitted with a friend and colleague a co-authored chapter to an academic press, I try, and often fall short, to balance my responsibilities to my wife and family with my own aims and personal projects. I returned to work. I maintain responsibility for house chores that I am capable of completing. These activities are familiar and routine.

 

After an especially busy travel season, where I was in Chicago, D.C. twice, and San Fransisco within a six or seven week period, my wife reminded me that while I aim to leave a legacy in the world, my greatest contribution to the future is a commitment to be present with the family; with our boys. This tension exposes the dual nature of illness: to serve ourselves before we cannot, or to serve others while we can.

 

There is little success to be found in chronic and advanced illness. There is no victory, fighting, nor conquering. I find these frameworks for illness harmful. So also, there is no succumbing to disease nor losing the battle. There is life. There is death. What there is, is enduring. Enduring is another name for survivorship. We survive to bear witness. Bearing witness is vulnerability, and it is vulnerability we recognize as bravery. Survivors are constrained to record their experiences. To leave behind something permanent from the ephemeral.

 

If there is something Whitney and I have sought to teach others, lessons we learned ourselves, it is we live to bear witness to endure each day. Our endurance is strengthened when we commit ourselves to being on the journey with others. Thank you for hearing our story and for telling us yours.

 

Enduring. With vulnerability. With bravery. Together.

 

June 10, 2016; June 10, 2018.

xoxo.

Dear boys, a story about kindness

Dear boys,

I am in seat 4C on an airplane called an airbus 320! Ask mom to show you a picture of a plane in the “shine a light” book. The pilots are steering us toward San Francisco, California. I am on a long plane ride, and I am thinking about you.

I have not been home very much lately. I have not had much time to play when I have been home.

I ask people if I can visit their meetings to tell stories. Sometimes people invite me to come, without me asking, like a birthday party! Sometimes I see friends, and sometimes I meet new friends. I am always very nervous when I meet new friends. When I get nervous it makes me feel very dizzy. Isn’t that strange? My brain boo boo makes me feel these strange ways.

Isaac, you know the most about my brain boo boo. You can tell your brothers about it if you want to.

It is very normal to feel nervous.

My hurt brain makes me feel dizzy and weak when I get very, very nervous. You don’t have to worry about that. I take medicine that helps. Sometimes a hurt in one part of our body can make other parts feel hurt, too.

Noah, do you remember when you broke your arm? The doctor gave you a “robot arm!” [AH: cast] Your arm was hurt, and that made you feel very sick and very tired. A hurt in your arm made other parts hurt, too! Because we need our brains to help all over our bodies, the brain boo boo I have makes me walk with a cane, and I get very weak sometimes, and I also feel very dizzy when I get nervous.

I am on the airplane to go to California and tell a story! When I tell a story to new friends I usually talk about kindness. I like stories that teach people new things–or sometimes old things that maybe they forgot. Talking about kindness is one of the most important things I talk about.

I thought about this earlier, and I thought that I have not been very kind to each of you. I am very sorry for not being kind. I have not made very much time to play when I have been home.

Gideon, today before I left to go on my trip, I was cross with you because you did not eat your lunch. I am very sorry for not speaking kindly with you.

It is important we treat others in the ways we think are most important. I think being kind is the most important thing.

I am telling stories to new friends this week. Some of my new friends have hurt bodies like me. Other friends are helpers for people with hurt bodies. Some of the helpers are doctors. Many of us are both! We have hurt bodies, and we are also helpers! You can be a helper even if you have a hurt body! That’s important to remember!

When a helper spends time with people who are hurt or sick, the helpers may think what is most important is fixing the hurt body. Sometimes the helpers think if they cannot fix a hurt body, then the helper did not do a good job. The helpers may start to feel sad. Feeling sad is ok. Like being nervous. But we shouldn’t always feel that way.

Boys, sometimes a hurt body cannot be fixed. But that does not mean we should be angry. It does not mean the helper did a bad job.

Remember what I think is most important?

Kindness.

Sometimes being kind makes someone feel better even than fixing a hurt body.

That is the story I am going to tell my new friends. The helper that daddy knows who tried to fix my brain boo boo couldn’t fix it all the way, but he was very kind. I’m going to talk to my new friends about how kind he is. I’ll remind the helpers especially that I think it’s more important to be kind all the time, even if you can’t fix a boo boo.

I miss each of you very, very much. I cannot wait to be home and give each of you a big hug!

I love you and love you and love you, no matter what.

-Dad

Inaugural Tumor Takedown Tailgate to Benefit National Brain Tumor Society

AandW_TTT_LogoPlease join me and Whitney at restaurant Revery, 299 W Main St, Greenwood, IN, on April 22, 2018, 3:00pm-7:00pm for a tailgate to raise funds for National Brain Tumor Society! We are joined by Lauren Casey, WRTV6, J. Elliott, Mashcraft Brewing Company, Central State Brewing, RNDC, an Eli Creek Family Farms hog roast and American style grilled burgers and dogs from Performance Food Group, grilled by the team at Revery, the #BlakeStrong Bowell Fund, and a silent auction featuring local retailers, for a great event for an even better cause.

Please share this blog post, the Eventbrite ticket link, or the following PDF’s to spread the word about the event.

Inaugural Tumor Takedown Logo and Flyer

Inaugural Tumor Takedown Menu_print

The event is $40/ticket, which provides two complimentary drinks, food, music, a special survivors recognition activity, access to and the silent auction, and more. Additional drinks may be purchased on site. The event is 21+. If you would like to donate, but are unable to purchase a ticket to attend in person, donations can be made directly to the event donation page here. All proceeds benefit National Brain Tumor Society.

In June 2016 I was diagnosed with glioblastoma, an aggressive brain cancer, with a grim prognosis. Whitney and I are raising funds for to the largest non-profit, brain tumor research funding organization in the US, National Brain Tumor Society (www.braintumor.org)

A Conversation with Neuroscientist and Author, Barbara Lipska, PhD

[Note: An edited version of this post first appeared on blog.braintumor.org]

Introduction

Barbara Lipska, PhD, director of the Human Brain Collection Core at the National Institute of Mental Health (NIMH), and author of the recently published memoir, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery, notes her fantastic medical team, devoted family, and stubborn optimism as important tools for treatment and recovery from metastatic melanoma, but as she says, with metastatic cancer, the journey is “never really over.”

 

Dr. Lipska’s book is available April 3, 2018.

IMG_2763

Adam Hayden snaps a selfie with the press kit for Dr. Lipska’s memoir, The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery

Dr. Lipska telephoned me from her home near the National Institutes of Health (NIH) Bethesda campus, where Lipska spent much of her career.

 

Thick with her charming, Eastern European accent, Lipska remarked that she was only two years older than I am now when she immigrated to America from Poland. Having spent time recently reviewing Lipska’s book, connecting with her by phone felt more like catching up with a distant relative than interviewing the high profile scientist whose early career work established a novel theoretical model for the etiology and study of mental illness, namely schizophrenia. Her willingness to engage me, a new acquaintance, with humor, attention, and presence makes it no surprise that Lipska feels an obligation to help others, and she desires that her writing brings hope to readers. In this post, I summarize themes from our conversation, which emerge from her recent book. As someone living with glioblastoma (GBM), I took interest in Lipska’s experience with an immunotherapy trial to treat her metastatic brain cancer and her vivid descriptions of losing and recovering her sense of self through the ordeal.

Lipska’s neuroscientific training buttresses her claims of personal identity: “we are our brains,” she writes in her book, but it’s noteworthy that Lipska does not leave all matters of who she is up to biological explanation. She writes later in the memoir, “I insisted on being myself despite cancer and radiation.” The joy of reading a book like Lipska’s is the interplay between empiricism and physiology and more abstract notions of self, identity, hope, will, and optimism.

A bumpy road

I could not help but laugh during the early few minutes of our conversation when Lipska described her journey with metastatic melanoma–a journey that temporarily robbed her of her mind and nearly killed her, as a “bumpy road.” Lipska displays a robust optimism indicative of her strong-willed and competitive personality. She mentioned her desire to bring hope to readers. Drawing from my experience with scientists and researchers, a population that is often guarded about hope and optimism, in favor of evidence and conditional probabilities, I sensed there may be more, beneath the surface. I asked Dr. Lipska more pointedly if bringing hope was a primary reason for her writing.

 

Yes! She affirmed, “but not false hope,” she continued, “being optimistic is the only way to go.” Leaving time for a reflective pause, Dr. Lipska punctuated her sentiment, “we have nothing to lose by being optimistic.” Dr. Lipska remarked that science is evolving so quickly that diseases we once thought of having no treatment options are now manageable, and in many cases, curable.

 

Her scientific mindedness leaves plenty of room for human relationships. Dr. Lipska described her doctor as, “empathic and understanding.” She expressed thanks to her family, and identified one tactic, “engaging loved ones,” integral to enduring her difficult clinical trial protocol: targeted radiation and immunotherapy.

Treatment, trials, and quality of life

Lipska’s brain cancer–metastatic melanoma, presented at one time with as many as 18 small melanoma tumors in her brain, concentrated in her prefrontal cortex, the seat of personality regulation, among other vital functions. Targeted radiotherapy aims to damage the small tumors before her treating physician administers an immunotherapy agent to seek and destroy the damaged and vulnerable tumor cells. The immunotherapy protocol was available to Lipska after her enrollment in a clinical trial. The eligibility criteria required that enrollees exhibit no “live” tumors. Lipska underwent a final pre-enrollment MRI scan to ensure her brain was clear.

 

Lipska shared her images with a trusted physician outside of the trial. Her doctor found live tumors indicated on the MRI scan that were not identified by the clinical trial physician. Lipska faced a choice to divulge her sensitive information, which would render her ineligible for the trial, or proceed with the results of her second opinion undisclosed. The decision making process is best left to Lipska’s adept storytelling. But when I asked if she made the right choice, she wisely stated that, “everyone is clever in hindsight.”

 

I told Dr. Lipska, during my awake craniotomy, I was faced with the choice to pursue an aggressive resection, risking left-sided paralysis, or err on the side of caution, protecting much of my motor and sensory function, but leaving tumor in the margins of my surgical cavity. I explained to her that my decision to follow the more conservative tack was motivated by a desire to play with my young kids at home. Lipska emphasized the importance of quality of life in a patient’s medical care, and she raised an example: the use of steroids and the trade-off for negative impact on quality of life, most significantly mood swings. This example resonates with me and I trust many others in the brain tumor community.

Survivorship

I asked Lipska if she felt equipped with a clear survivorship plan following her treatment. She struggles with the ambiguity of survivorship. Even with the label, ‘survivor,’ she isn’t sure it is the correct term. Our conversation reflects the tone set in the Epilogue of her book: is it possible that those in the metastatic cancer community and others with tumors exhibiting high recurrence rates may never be survivors? Lipska displays careful and thoughtful consideration of these weighty issues that threaten the core of our relationships to our own bodies–will the cancer return? Will my body betray me? Dr. Lipska fears a return of, “a caricature of [herself],” affected by recurrent tumors invading and swelling in the complex networks of the brain, returning her to the brink of madness.

 

An attitude eerily similar to my own, and many others I meet with brain tumors and cancers of the central nervous system, we fear most for our families who are left with, “a deep, dark hole; an empty hole: black and grim,” following our deaths. Dr. Lipska decided to fill this hole preemptively with images, books, and memories with her husband, children, and grandchildren.

 

Lipska and I shared sighs and grunts, nonverbal signals mysteriously transmitted by telephone, to share a space of mutual understanding. We have permission to allow ourselves to enter this space because we are anchored by Lipska’s commitment to optimism. Recall, this is, “the only way to go.”

Combating stigma

I concluded our conversation asking Lipska to speak about the importance of research funding allocated by the NIH. Lipska quickly calculated the social cost to America from poor handling of mental illness, her neuroscientific specialty, of approximately $200 billion. The NIMH is a very small institute within the NIH, yet 20% of Americans are impacted by mental illness. Lipska is quick to emphasize the disproportionate funding with respect to the affected population.

 

“Mental illness is a disorder of the brain,” Lipska states plainly. She decries the continued stigmatizing of mental illness, and she skillfully connects the taboo of mental illness to the taboo surrounding cancer, from earlier in her life in Poland, where cancer was a perceived weakness by the individual rather than a disease.

 

“People should never feel guilty that they are sick.”

 

I encourage readers to spend time with Lipska’s book. Her expertise, her vulnerability, desire to help others, to give hope, and to confront stigma offer benefits to any reader. These valuable lessons are made even more meaningful when given voice by another member of the brain tumor community.

 

What We Gain Through Shared Language

And he’s on the table and gone to code/ And I do not think that anyone knows/ What they’re doing here” -“Jumper,” Third Eye Blind

 

My mom delivered me in a hospital with no staff anesthesiologist, and her care was provided by a general practitioner, not an OB. The story goes that when the doctor asked what my name would be, “Adam,” the doctor repeated a “poem” he knew called,”Fleas”: “Adam had ’em.” That was Putnam County Hospital.

 

I was raised in Arizona for many important developmental years, from four years old until 12. A pastor’s kid (“PK”). After some time in Phoenix, our family moved to a small rental home in an affluent Scottsdale community, near the new church build my dad was  leading, with tremendous support from mom. I was never much struck by this disparity between our 1,500 square feet and our neighbors’ 3,000. The road to hell may be paved with good intentions, but the road to wealth is not by ordination.

 

My childhood best friend owned lazer tag vests, guns, and even the LT base. He had a Commodore 64 and Nintendo. So long as I managed to be a good friend and an entertaining guest, there wasn’t much need for me to have those things, too. (There’s something of neoliberalism to speak to here, but I’m not a political scientist.)

 

We moved back home to Indiana in the middle of my sixth grade year. That was a tough move.

 

In 1996, I started high school. I was too young to catch Nirvana’s Nevermind a few years earlier. Girls were using pencil erasers to create negative space on the covers of their Mead notebooks in the form of the flying W, representing Weezer, and Green Day would be my bus companion on the way home–where my route would take me by Whitney’s house (my now wife), but we were only passing acquaintances then. Besides, she had an older brother with a car.

 

I was bullied on that bus. I started skateboarding home. Skating traded in emotional bruises for physical.

 

By 1996 my Green Day interest fueled a deeper dive into whatever punk rock was accessible in the Midwest: Rancid, Anti-Flag, NOFX, and the skate punk, Lagwagon, Pennywise, the Descendants, and Screeching Weasel.

 

In 1998, many of us fell for Third Eye Blind. “Jumper” was one of those radio singles that, along with tracks from Foo Fighters, seemed to transcend high school niche communities.

 

This morning I washed breakfast dishes, and without prompting, I started singing, “I wish you would step back from that ledge, my friend.” Isaac, perceptive, always listening, was strolling around humming and piecing those words together. I called him over, and we listened to a few 3eb tracks. Throughout life we wrap ourselves in lies to our own detriment (“Cut ties, with all the lies, that we’ve been living in.”) This is poignantly so in high school, and so the lyrics of that song unified an adolescent spirit.

 

***

I am active in medical eduction (#MedEd), on the periphery, anyway. I promote medical humanities, narrative medicine, or empathetic witnessing–there isn’t enough scholarship available yet to draw clear boundaries around sub-specialties, and this is probably good.

 

Being a patient advocate is an uphill road. There are receptive institutions, and receptivity increases more each lecture and conference, but fighting imposter syndrome is a struggle–what right do I have to teach these doctors? A senior resident has nearly a decade combined of undergraduate pre-med and med school training, not to mention 24 hour rotations through major departments, running codes, delivering babies, identifying pill-seeking behaviors, establishing relationships with patients while maintaining objective distance, and coming up with poems about newborns.

 

I have had glioblastoma for 22months. What right do I have to give a Grand Rounds? (Note: I haven’t given a Grand Rounds, so someone invite me!) I reflected with a friend recently on my strategy to engage a clinical audience. I talked about how hard I work to cultivate a medical vocabulary: to translate my experience into the physician’s vernacular. When discussing my diagnosis, I emphasize “histologic vs molecular pathology and classification of tumors.” I do not adjust my medications, I “engage in monitoring and medication self-titration.” I only rarely talk about “scans,” instead, “diagnostic imaging.”

 

The idea is this: to gain credibility in the healthcare space, I demonstrate my aptitude with jargon to earn my seat at your table. This is not only the patient’s burden, medical hierarchy itself is a power structure, where those with training, experience, and knowledge sit atop those with lesser of these.

 

The error I commit when accepting the encumbrance of fitting my language to yours is that we are somehow peers, and I must demonstrate thus to be respected, and only those who earn respect are listened to. That may be a problem of the dominator hierarchy rife in medicine, but, and I’m now coming to realize, this isn’t my problem to solve. Indeed, it is not a problem by which I am directly impacted, medical miscommunication and poor handling of complex cases, notwithstanding.

 

Stakeholders in a diverse project with shared aims need not be peers to be colleagues.

 

I do not speak the language of medicine. I speak the language of humanities. When the doctor in training was dissecting cadavers, I was reconstructing medieval arguments for god’s existence. Starkly contrasting research, one would think, but when viewed like this, mapping the body (med students) and understanding what our greatest thinkers have claimed about the purported deity that ostensibly designed it thus (philosophy students), the lines are blurred.

 

I aim to be competent in the language of medicine, but no longer to earn the respect of my practitioner audience, but to best understand the disease that plagues my body. The practitioner audience may learn my language, too, not to publish papers in professional philosophy, but to best understand the life-world of people under their care.

 

Doctors, we are not peers, but that does not entail we are not colleagues. We, each of us, seek to improve the lives of others, and in that pursuit, we have many shared aims. That is what we gain through shared language. Let’s move forward together, as colleagues. It takes expertise on both ends of the stethoscope to chart our future path.

 

After all, “Everyone has got a reason to put the past away.”

 

The Benefit of Death Talk

I addressed a large audience of 250 friends, family, and community members in a public “talk,” several months following my diagnosis of glioblastoma—a grade IV malignant brain tumor. I rehearsed my thoughts, writing posts for my personal blog, Glioblastology, beginning in October 2016, four months following my hospital discharge, after brain surgery and intensive rehabilitation therapy in an inpatient, acute rehab setting. I spoke openly about the population statistics for persons living with glioblastoma, punctuated by a five-year survival rate of roughly 5-8%. On the reality of confronting death, I acknowledged my fear, but I told the audience, “we face fear with familiarity.”

Facing fear with familiarity would be my mantra during the following months of public speaking, blogging, and personal research and writing in the domains of research oncology, narrative medicine, and end of life care, culminating in the preparation of legal documents, including an advance directive. Next week I deliver a lecture in the auditorium of Riley Hospital for Children and broadcasted across the Indiana University (IU) Health Network. My lecture is next up in the monthly series organized by the Fairbanks Center for Medical Ethics. The topic is “Narrative and Physician-Patient Dynamics.”

I earned the opportunities that are set before me: behind each lecture to a room of clinicians is a fumbling and awkward guest spot in an undergraduate classroom, for every intimate seminar discussion with fourth year medical students on the cusp of residency is a rambling Facebook live broadcast; each funded opportunity to attend a scientific meeting is supported by hours of personal research with “out of pocket costs” for very expensive clinical text books—don’t bring this up with Whitney! She ought to be given an honorary CPA for her ability to stretch her hard work that results in our primary income and my disability disbursements and part time work to accommodate our kids’ school fees, housing costs, and my Amazon habit. Each invitation to author a guest blog post or co-author an academic paper is supported by thousands of draft words in never-to-be-seen posts and papers.

The accomplishment I am most proud of is my relationship with the end of my life.

The likely course of my disease progression includes loss of executive function: inability to feed myself, maximum assistance with toileting, inability to speak, impaired reading, writing, and significant language deficits; all of these functions stand to decline as my brain tumor spreads. A palliative care doctor described this to me as a loss of contact with the world. Whether you personally know me, reading only this post may provide all the information needed to realize what a terrible loss this is to my sense of identity. It is terrifying to consider my own loss of connection. Worse still for my wife–so many Amazon purchases she has rationalized on my behalf.

Whenever asked to speak, write, give an interview, offer my perspective, join a committee, call my congress person, or travel to an event, I try to say yes! Anytime the following interjection is welcome in conversation I state one of my goals: to bring death, the topic of death, out of the shadows of taboo, and introduce this topic into regular discourse. The American conversation, writ large, is missing an appreciation for death. Plenty of complaining about taxes, little conversation about death, yet these are purportedly the only certainties in life.

Ironic.

This is all to say, being the recipient of a devastating cancer diagnosis has made me more vulnerable to bombastic claims about the roles of turmeric and curcumin in cancer care than honest and open dialog about death. Something about this is both culturally instructive and tragically unfortunate.

“Death is having its moment,” tweets The Guardian in promotion of this story, “How Death Got Cool.” Let me tell you: the reports of death’s coolness are greatly exaggerated. Many of those in my community, the brain tumor community, we are fixed in a rather unique situation. Our tumors are changing, growing new blood vessels to feed themselves, creating a poisonous “tumor micro environment” that results in deleterious effects to neighboring healthy cells and producing resistance to chemotherapeutic agents sent in to kill the very cancer cells, which are contributing to this drug resistant environment. Many persons living with lower grade brain tumors are set on a trajectory toward aggressive transformations of their tumors into higher grades. Those of us with grade IV gliomas, glioblastoma, are facing the same standard of care protocol that has been with us for for nearly 20 years.

We face death.

I am sympathetic to the trendiness of death talk. A necessary evil, as it were. An astonishingly small number of persons with brain cancer are referred to hospice services. Patient advocacy includes making our voices heard both with respect to treatment decisions, but also with respect to declining further, non-curative treatment. The medical community must do better to usher in these conversations earlier.

Though, I also face a nagging feeling that we are too ready to discuss death; that discussing our impending death is somehow a badge of honor that we resign ourselves to our fate. I notice champions of hospice and palliative care in our community applaud those who have been forthcoming with their end of life plans, and I think on this approach we are committing a grave error. The advance directive is the endpoint of a much longer conversation about values, priorities, considerations for our loved ones, and desires for our final minutes (hours, days, or weeks).

My relationship with the end of my life is the result of countless hours of tears, reflection, bear hugs, kisses, worries, and sleepless nights about my wife and our children.

My aim to bring death out of the shadows of taboo is not to ensure every American has an advance directive on file–though, that is not a bad result; rather, my espousal of end of life consideration is to promote the dialogue pertaining to death. The benefit of death becoming trendy is not realized in your producing a document. The document is novel. The document is the shiny toy. The document is the distraction. The benefit of death talk is that we reveal a more intimate and honest relationship with those who accompany us on our journey to our mortal end. It is the conversation that should be lifted up, not its designed outcomes.

The accomplishment I am most proud of is my relationship with the end of my life, because it is the accomplishment of my relationship with my wife, our children, and our open and honest dialogue. It is the accomplishment of hours of reflection, consideration, and hard-won acceptance.

Unfinished but timely: on the patient perspective

Note: I wrote this post yesterday after reading the article mentioned in what follows. I did not publish. I wanted to return, edit, clean up, ensure my case was compelling.

Instead.

I missed a window of opportunity to strike while the iron was hot, as it were. Tonight Medium ran this response from @cancergeek to the piece I critique. I realize my timely response is preferable to an edited and polished version.

I hope you’ll appreciate this raw, unfinished draft for the value it offers from my perspective–the patient perspective.

**

I note a growing body of literature that advances the revision of medical practice in light of a personal illness experience. Scrolling the opinion and editorial pages of the New York Times, STAT News, NPR, The Atlantic, and many more outlets reveals emergency medicine physicians, surgeons, hospitalists, and so forth describing their clinical lives prior to an illness experience, followed by a narrative reconstruction of that experience, leading ultimately to a cathartic synthesis, “if only I had known then, what I’ve manage to learn now…”

On its face these are all together helpful and instructive narratives! Each of us is privileged to learn from our experiences–physicians and anyone else. Obviously, we are all vulnerable to illness; hence, these narratives stand to benefit each of us. Besides, it would be fundamentally antithetical to medical research to imagine that our knowledge of medicine is somehow complete, or extensive enough, that lessons no longer lie prone at every turn. Indeed, it is a strength of the research and clinical communities to admit fallibility and openness to change; traits which are to be honored, taught, and practiced.

OK, this all sounds good, but to start that paragraph, I said, “on its face,” what gives!?

Each evening before bed, I return to four or five articles that I have opened in browser windows on my phone from daily email roundups, Twitter, Facebook shares, etc. Typically these are healthcare policy editorials, new medical research releases, or, no surprise, medical narratives like those that I described to you.

Last night I focused attention on this piece from NPR’s medical news service, Shots, carrying the compelling (if not click-bait) title, “Brush with death leads doctor to focus on patient perspective.” With apologies to NPR, I’ll pick on this article. I cannot imagine that the doctor was oblivious to the “patient perspective” prior to their “brush with death.” I’ll concede that what is meant by the headline is to suggest a reorientation of priorities following a traumatic experience (and titles/headlines are an editorial call), but let’s be fair to the subject of the article and not gesture toward the idea that only by way of trauma might this clinician be brought to focus on the patient perspective. That strikes me as uncharitable.

More robustly, both as a response to editorial teams generally, and to those attuned to this physician-turned-patient narrative genre, particularly, I continue to implore you to tap into the patient community not only for one-in-a-million illness recovery/survivorship stories, and make-a-wish feel good coverage, but to earnestly derive action-oriented critiques of the American healthcare system. The physician-turned-patient narrative offers great utility because it carries both credibility and a familiarity of the system that is critiqued. There is an inbuilt plot twist because the doctor learns through role reversal. Yet these narratives always lead with a clinical orientation and so are inherently scope-limited.

The patient community also carries intimate knowledge of the healthcare system, policies, protocols, and knowledge of disease and symptom management. We are expert communicators of the healthcare system because we field telephone calls and visits from family, friends, and coworkers.

NPR reports these words from the brush-with-death clinician:

“To listen to our patients with a generous ear does require a willingness to relinquish control of the narrative […] Our questions allow for the possibility that we do not already know the answers. By not dominating the flow of information, we allow the actual history to emerge.”

Let’s follow doctor’s orders! Extend a generous ear to our patients who are navigating our healthcare system, interacting with clinicians, thinking, feeling, and living our diseases. If role reversals and plot twists portray the physician as coming down from on high to learn from the patient perspective. Let us also encourage our patients to reconstruct their experiences that they may be lifted up to exercise the influence of a clinician.

I am an author informed by disease. Physicians, patients, we all have lessons to learn and stories to tell. We may bring to light a path forward for both physicians and patients that we may travel together as we recognize our shared humanity found in close proximity to the practice of medicine.