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.

Measure What Matters

At the funeral, in the foyer of the church, amidst the sea of grieving strangers, herding their way into the receiving line, he said to me, “I wish my dad would hug me. I’m not sure he’s even said ‘I love you.’”

Don’t be misled; the funeral isn’t for his old man. Time remains to reconcile the regrets. To offer a hug and say, “I love you.”

I recall shoe gazing and nodding in furrowed-brow and puzzled empathy.

“I hug my kids,” I thought, two of them then, three now, “all the damned time.” Later that same day I was blowing raspberries on my middle’s exposed belly while those earlier words—“wish he’d hug me,” paced a groove in my mind. My boys likely wish I hugged a little less. I suspect their aversion will increase, with their ages, culminating with outright avoidance come middle school. The baby, though, “Little Adam,” he still goes for three big squeezes and a smooch at bedtime.

This is the stuff funerals are for, prioritizing, reflecting, like an off-cycle New Year’s resolution. We die so that the living can figure out what they’re supposed to be doing. I suppose this is why it’s uncomfortable to attend funerals.

A financial advisor, an acquaintance, posted to Facebook, “What counts as rich? Not rich with friends or family, but assets, holdings, a salary. I want a number,” the post concluded (my emphasis). Comments followed (though, not mine). The only sense in which I am rich is the former.

The problem, I suppose, with measuring wealth in relationships, is presupposed by the financial advisor: it is not quantitatively evaluable. What we measure is what matters. A quantity of relationships is not the desired end, otherwise Facebook would be good for us, instead, it is the quality we ought to measure, yet no quality scale exists for relationships.

It is evaluation that resonates with me. As a person living with an advanced illness, measurement and evaluation are central to my life. Occupational and physical therapists evaluate strength, balance, coordination, and range of motion, radiologists employ imaging protocols to measure changes in my brain that are indicative of disease response to treatment or progression, my neuro-oncologist evaluates the physical symptoms of disease, looking to maximize therapeutic efficacy and mitigate side effects. Ultimately my wife and I revise the probability of my continued survival given a set of variables informed by many of these inputs I described. In a technical sense, this is conditional probability. In real life, it is nail biting. Each time I cannot remember a name, forget a word, lose my balance, complain of light-headedness, or trip on the turned-up corner of the threshold rug is cause to scrutinize the event. Will we look back on this moment, as the first sign of my cognitive decline?

Folks like to say things like the following to comfort me—though I suspect it is more to comfort them, in the face of my seemingly random and devastating diagnosis, “I could get hit by a bus tomorrow. None of us know when we will die.”

Fair, but unless each time you cross the street you think to yourself, “Will this be the time that I am struck dead by a bus?” then you are drawing a false equivalency between the uncertain timelines for our passing. This sort of thinking, the sort of thinking where every misstep raises a flag, produces anxiety, and if you do not think so, here is a recent article published in STAT News (link) that reports one in five cancer patients develop PTSD within six months of their diagnosis.

The quantity and quality distinction is especially salient in these cases. Quantity of life is the lesser half of the diagnosis-prognosis relationship, that is, quantity of life, how long you live, is the deadbeat who “married up” to quality, yet quantity gets all the attention. As the financial advisor crudely stated in the Facebook post, “I want a number!”

Our chief metric for drug approval and the measurement the newly diagnosed latch onto is overall median survival. Indeed, I have appealed to this number several times to convey the seriousness of my diagnosis. Mainly to fire back at the “hit by a bus” crowd. I’ll think, “Sure, but is your bus coming in 15-18 months, with little braking and steering innovation in 20 years?”

I wonder lately, why the hit-by-a-bus crowd has been bothering me so much, and that thought is closely related to my reticence to openly share the (relatively) good news of a stable MRI scan. You’d have thought I would like to hit all the social media channels with news of a stable scan—stable meaning the areas of enhancement on the MRI images, indicative of tumor, are “stable,” have not progressed, when contrasted with the previous scan, eight weeks prior. If you follow me on social media, you recall I paraphrased the impression of my recent radiology report with the following words, “You aren’t better, you just aren’t worse.”

The truth of it is this: if I celebrate my good scans, if I hint that I am outliving the survival curve, then a culture that is steeped in quantity of life is placated, paying little mind to quality. We are a culture of whatever-it-takes life saving measures, poor advanced care planning, and doctors who view death as failure, thereby obstructing the end of life care that is of equal import to beginning of life care. I am a proponent of family planning, replete with a commitment to pro-choice policies, so too am I proponent of end of life planning, which includes thoughtful analysis, design, and implementation of policies, procedures, and protocols that prize patient and family choices in the end of life decision making process.

I am wealthy in my relationships. My kids won’t wonder about hugs. I am not rich in the numbers, but the immeasurable, the intangible, the quality of my life is on my mind. And my retort to the financial advisors: quality is priceless.

New Resource for Advanced Illness; My Contribution

Jim Rosenberg is a nice guy and a good conversationalist. Jim is not one of these shoot the shit, “how’s the weather?” kind of conversationalists, but more of the Quaker, “how is it with your soul” types. Jim is the conversationalist who actively listens. He is not waiting for his to turn to speak. Rather, he waits to rebound spoken words back toward the speaker in such a way that helps you realize there is something hidden beneath your spoken words that you didn’t realize was there, lying prone beneath the noise, when you spoke them. Jim teaches you about yourself while he interviews you. Jim is appreciative of your time, but it’s often the partner on the other end of the phone (or Skype video call) that most values the experience.

In short, it is a pleasure to speak with Jim, and that pleasure was mine earlier this month (March 13, 2017), when I interviewed with Jim for his innovative resource targeting patients and caregivers of folks facing advanced illness and the end-of-life. Jim’s resource is called the I Know Something Project (IKSproject.com), and though in its earliest stages of development, the powerful impact of a mature and fully fleshed out product is not difficult to imagine. Jim and his late wife Amy radiate love. If you wonder how it is I use ‘late-wife’ and ‘radiate’ (in the present tense), in the same sentence, you need only connect with Jim to see Amy’s light and their love shine through Jim’s soft eyes and focused gaze.

 

Amy’s passing left both Jim and Amy feeling overwhelmed, cast from the life they knew and navigating seemingly uncharted waters, yet as Jim observes, everyone faces death, why should there be such a void of helpful content? Enter the I Know Something Project:

The “I Know Something” (IKS) community captures short, personal video stories from people who have faced the hard moments in life that we don’t talk about every day. It’s about giving voice to every one of us and all we know. We then add links and reflection exercises to the stories to make it easier for everyone to think about their unique situations and specific needs. So in our own time, at our own pace, and in our own way, we can figure out answers surrounded by others who have been there before (“About this Project.” I Know Something Project. https://iksproject.com/about/).

That Monday afternoon in March, Jim and I talked and laughed for over two hours while I rehearsed my life over the past ten months, battling terminal brain cancer. My first edited “story,” titled “Choosing Quality of Life Over Treatment (link)” is now available on the IKS website. Those who know me, you’ll recognize my familiar, humor-driven, yet thoughtful tone, and I hope now you’ll know something about the person on the other side of the camera, Jim, a nice guy, and a good conversationalist.

 

Please pass the IKS project on to others who may find the resource of great value, and check back for new stories to be added all the time.

If you would like to share your story, let Jim know through the site. You can also reach him to talk about any question at jim@iksproject.com.

Direct link to my edited story: https://iksproject.com/choosing-quality-of-life-over-treatment/

Scan Day!

At every occasion I’ll be ready for the funeral. Even if we read too much into the meaning, no matter, turn it up as you read this post. Here are the lyrics.

Welcome to scan day, everybody! Our every-eight-week-installment of what is happening inside Adam’s head. I get to wear scrubs, the techs are friendly, I see my neuro oncologist and his terrific nurse coordinator, and I get a Starbucks after; sometimes a pastrami on rye with mustard. What’s not to like?

Keep the following acronym in mind today, friends: PFS–progression free scan.

Watch the fluids, not too much coffee, I’ll get a bag of IV saline, contrast dye, and no bathroom  breaks for 30-/40-odd minutes while high frequency magnetic resonance aligns the proton spins in my tissue to capture radio images of my brain. Hey, hey, enough with the science.

It’s like this: *bang bang bang bang*, and then we get pictures.

Lie still.

Last night was the first-Sunday-of-the-month #BTSM (Brain Tumor Social Media) chat. Topic: Death and Dying. We enjoyed engaging with patients, caregivers, palliative care docs, and hospice providers. I look forward to these monthly discussions to connect with my community–and even though we’re conversing at 140 characters, I have developed meaningful relationships through these chats.

The topic, death, dying, advanced directives, and so on will show up here soon enough. For now, the key take-away from last night is that preparing for end-of-life is a conversation that should occur  openly and often between patients, loved ones, and medical teams.

At every occasion, we’ll be ready for the funeral, and preparing ourselves helps us live into every moment, seeking meaningful relationships and pastrami sandwiches.

Cheers- AH