On Being a Mascot

“I do not want to be the cancer mascot,” I naively said a few days after awake brain surgery (craniotomy and tumor resection/debulking). Cards, balloons, social media posts, and visits from friends and family weighed heavily on my badly bruised, traumatized, and swelling brain. In this post I reflect on my journey, one year on.

The trauma of brain surgery is so significant that now, one year later, my MRI scans continue to show post-surgical changes. The brain tissue that is my parietal lobe is shifting posteriorly toward the occipital horn. The worst news we could receive following an MRI is tumor progression (growth), and so far there are no signs of this progression. The scans are “stable.” Stable is terrific! And stable can also be misleading. Regardless of stable tumor/disease status, each scan reveals new swelling, shifting tissues, blood flow abnormalities, developing and decreasing fluid pockets. These are occurring with my brain tissue all the time. The brain is the organ that is most easy to damage and most difficult to heal.

I often forget, and this lesson is lost on many, that I have brain damage. It is with deep, deep breaths of relief that I am yet to experience any outward-facing language or higher-level cognitive deficits, but when I am critical of myself, when I am frustrated with my inability to effortlessly walk, feel, sense, or shift weight or pivot toward my left side; when I am depressed to wake up with yet another headache, when I have to cancel dinner with friends because of fatigue, I remind myself that, after all, I do have brain damage.

My surgery was one year ago, to the day, May 26, 2016, prior to me sitting down to pen this blog post today, on May 26, 2017. One year ago in May, 2016, I hesitated sharing too much of my story for fear that I would alienate friends, drive people away who lack the desire, emotional wherewithal, or open-mindedness to join hands with their friend Adam, a former grad student, a recent bartender, a new dad to young children, who now lay in a hospital bed, his head bandaged, his left arm and leg weak and flaccid; someone who requires a visitor badge to spend time with. A 35 year old young, bearded, indie rock dad who was diagnosed with an incurable brain cancer, which typically affects people, mostly men, in their 50s and 60s, not their 30s.

“I do not want to be the cancer mascot.”

I had over 40 staples in my head, I was stuck in a hospital bed or a wheelchair, and nurses popped in and out of my room every twenty minutes to take vitals, or administer meds, change the IV drip, or measure the amount of urine I was evacuating. I exemplified a hospital patient. There was no choice but to be a mascot because I was dressed in it, bathed in it, immersed in it.

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Adam in hospital recovery room, bandages off, the hair part from the staples, May 2016.

I was a cancer mascot. What would I represent?

I saw your head tilts, your furrowed brows, your smiles, turned down at the corners. I watched donations pour in to sustain our family and keep our financial heads above water while swallowing the pride, informed by societal norms, that a husband and father should provide for his family. Please know that our community of friends near and far, loved ones and strangers, classmates and coworkers, we could not be emotionally, financially, or physically stable as we are without your support!

May, 2016, I stared out the window to look onto the busy world, sobbing with my wife. May, 2017, still staring out the window, and still sobbing with my wife, but not as often. I embrace my role. I am a mascot! I am fortunate to have the strength, the cognitive processing power, an articulate nature, and above all, a supportive network of family and friends to embrace my role.

Proudly, even.

A fundraiser was organized for our family, with permission, but we had no involvement in scheduling, planning, advertising, or organizing for the event. When we were informed a couple weeks ago of the planned date for this fundraiser, and that it would take place, tonight, May 26, 2017, Whitney and I looked at each other, smiled, and released our wet eyes. What more can be done on the one year anniversary recognizing your life forever there after would never ever be the same again? We said “great, it will be an anniversary party.” We have chosen to embrace our new life, to try our very best to share with the world, led by honesty, vulnerability, and speaking in unison with the voices of other survivors, accompanying them, another voice in the choir.

I didn’t want to be the cancer mascot because I feared it would strip me of my identity. What I have learned this year is that personal identity is not static and unchanging. We are adaptable. We learn, grow, evolve, fail, sob, rally, and push on. Somewhere in there we locate our values, and finding bedrock in what is most important frees us of fear that we will become something we do not want to be, and instead helps to be who we are, regardless of circumstance.

I didn’t want to be the cancer mascot because I didn’t know what I was representing, what values would shine through, what a symbolic exemplar of cancer would portray to the world, and today I have a little more insight into the symbolic representation of a terrible disease that touches, through direct diagnosis or diagnosis of a friend or loved one, one in every two Americans. What we need is honesty, vulnerability, passion, and a willingness to embrace our challenges.

Each day is not easy. I am an ass sometimes. My curated life through this blog and social media is not designed to disguise my bad days and hard times, but instead, I seek to demonstrate the power one person has in representing something bigger than they are. We are all cheering each other on, and embracing our shared encouragement is the role of a mascot.

What mascot can you be for the people in your life? What do you seek to represent?

Happy anniversary, and cheers!

 

Visible Scars; Invisible Diseases

In this post I reveal complex emotions involving survivorship, other cancer survivors, and the general population. I share my vulnerabilities and insecurities. Yet also, in this post, I find strength.

I feel guilty that I am not more sick.

That is a strange emotion, isn’t it?

I feel guilty that I am not more sick.

I have incurable brain cancer. It is very unlikely that I live longer than four or five more years, and that prognosis is on the positive end of the normalization curve. Statistically only 37% of us with high grade gliomas make it to the milestone I just celebrated: one year post-diagnosis.

Yet, the sentiment remains.

I feel guilty that I am not more sick.

Of course, Whitney and I should not invite you to “save the date” for my funeral—that would be premature. Just this past week I was hanging out with other brain tumor survivors in Washington D.C. for the National Brain Tumor Society (NBTS) annual advocacy event, Head to the Hill (#Head2Hill). In Washington, Whitney and I met new friends, a few who have been diagnosed with glioblastoma multiforme (GBM), the brain cancer with which I have also been diagnosed. A few of these survivors are five years post-diagnosis, a milestone, which, according to the population statistics, only 5% of those diagnosed manage to achieve. Pace the statistics, at five year survival, many are looking well.

These friends lend hope to Whitney and me, and for me specifically, I benefit from these new relationships in unexpected ways. It is our scars.

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Adam’s Craniotomy Scar: Surgery, May 26, 2016; Photo: May 15, 2017. One year post-diagnosis.

Our balding or shaved heads are marked with telltale scars whose origin could only be traced to the razor sharp scalpel on the neurosurgeon’s instrument table. The surgeon’s confident and skilled hands unzip our scalps to reach our skulls.

With survivors, I do not feel guilty that I am not more sick. I notice our scars, and I know what these surgical wounds conceal: our invisible diseases. Seizures, headaches, light sensitivity, overstimulation and brain fatigue, memory trouble, word-finding issues, slowed speech and language processing, visual field cuts, proprioceptive deficits—that is, trouble finding our bodies in space, muscle weakness, off-balance walking like we are always stepping from stone to stone to cross a moving stream. The gestures that Jeep drivers and Harley Davidson owners signal to each other as they pass, our scars indicate to each other that we have a meaningful connection; that we understand.

 

The cancer patient experience is supposed to go like this: our hair falls out, we lose weight, we turn gray, we require IVs for pain meds, chemo infusions, and saline to keep us hydrated. We are nauseated and bed-ridden. We are sick—visibly sick. There is no hiding that we feel terrible. Hence, when we manage to rally and go out to dinner, or attend a concert, or take a vacation, our friends and acquaintances say things like, “I am so happy you are doing so well,” or, “you are such an inspiration,” or, “wow, you’re looking fantastic,” or, “you are so strong.” This all makes sense, because, you know, we kind of look like shit, with the baldness, thinness, pale color, and poor appetite. Within the proper framework, namely, the context of our diseases ravaging through our vulnerable bodies and toxic chemotherapies killing the healthy cells we have left, in they context a trip outside the home is viewed as victory.

And for many, it is. 

But for me?

I do not look this way at all.

Instead.

I feel guilty that I am not more sick.

For many of these sick cancer patients, god willing, their chemo infusions, radiation treatments, surgeries, and immunotherapies will shrink their tumors. Ultimately, the oncologist will declare the cancer is in remission, and all that will be left to remind us of their emaciated bodies, gray faces, and bald heads will be the photographs. In place of these sick and frail bodies returns the glow of good health. They have “beat” their diseases. They are true “survivors”—‘survivorship’ is a term with which I wrestle. In ordinary language many English speakers apply ‘survivor’ to a person who has faced a disease, condition, circumstance, challenge, and so forth, and this person has come out “victorious,” these people are “survivors.”

I recently commented in a science forum that I am “a survivor of glioblastoma” and the first reply stated, “congratulations you survived GBM, that’s a hard one to beat!”

At any rate, I am a survivor so far as I am not dead yet, and when I connect with other survivor sisters and brothers, well, this strange and unwelcome emotion turns up.

I am guilty that I am not more sick.

 

I tolerate my chemotherapy, which is administered in pill form, not IV infusion, and even though it is a chemically altered grandchild of mustard gas, and even though stated directions advise wearing gloves to handle the pills, and even though the morning after chemo I often both vomit and face constipation—a frustrating, confusing, and absurdly humorous combination of side effects, despite these ills, my treatment occurs within my house, not at the infusion lab, and if you were to join me for a meal, if it weren’t for my cane and awkward gait, you may not realize there is a thing wrong with me.

 

I see my survivor sisters and brothers hacking away at the underbrush of side effects as they trudge the overgrown path toward a clearing of rest, relaxation, and treatment breaks, toward remission. Sisters and brothers, you look like hell, but we are cheering you on! You feel terrible, but we are cheering you on! You haven’t had the strength to get out of bed in a month, but we are cheering you on!

Now maybe you are beginning to understand my counter-intuitive emotion.

I am guilty that I am not more sick.

 

I love public speaking, and I am better than competent telling my story and connecting a personal message to illuminate the illness experience for other survivors and caregivers. I went to D.C. to advocate on the Hill. I had a proposal accepted for an academic conference in June. I applied for financial aid to attend the Stanford Med X program in Southern California in September—fingers crossed. I continue to book speaking gigs, I accepted an offer to volunteer my time to a patient advisory council with a large non-profit cancer advocacy organization. I interview with local media outlets to say more about my family and surviving brain cancer.

I can do all of these things, so long as I pay attention to my nutrition, stick to a routine sleep cycle, double check my medication dosing and schedule, and continually monitor my fatigue. Keeping an eye on each of these variables helps to mitigate my headaches, seizures, balance issues, and so on.

I know that many of you are surprised when you meet me. Journalists who interview me, you know, for an interview with a terminally ill brain cancer patient, are often surprised. They non-verbally communicate their surprise when I greet them smiling and offer coffee or tea.

 

It is with anxiety that I face the uncertainty of feeling well today; it is heartbreaking to realize I am not as physically ill as my lung cancer sisters and brothers who cannot walk to the mailbox without extreme fatigue.

I am guilty that I am not more sick.

Your scars, my brain tumor survivor sisters and brothers, your invisible diseases for which we must fight to gain awareness from the general population, your friendship reminds me that the very best I can do is not hide my abilities in shame or guilt, nor should I shy away from discussions of my symptoms, but I should carry my strength and embrace opportunities to share my story, advocate, and change attitudes about what is the look, attitude, and ability of a typical cancer patient. The daily restrictions I place on my diet and activity earn me a generally good health. I am proud of my good health. 

Still. 

I feel guilty that I am not more sick.

 

We absolve ourselves of guilt when we recognize we could not have done otherwise. Maybe shallow guilt turns to deep regret when we recognize we could have done otherwise, yet we chose not to do so. To liberate our emotions of guilt it is important to communicate, contextualize, and identify the circumstances of our feeling guilty, and next to recognize how things could have been handled differently. If you feel guilty, ask, “could I have acted otherwise?”

I feel guilty that I am not more sick, but my body’s subservience to cancer and its concomitant toleration of treatment are both beyond my control. Neither guilt nor regret should grip us, so long as we take active steps to maintain our awareness of possible actions and outcomes in all situations, and we work to promote that awareness with others.

I must work to absolve myself of these guilty feelings of survivorship. The better use of my health, if better than other survivors’ health or not, is to stay the course of my advocacy and lend voices to those whose have been silenced by disease.
I wear my scars for what it communicates to other survivors. It cuts through the bullshit. And for those who may notice their own guilt for not recognizing the invisible diseases in friends, family, and acquaintances, absolve your guilt by seeing things through and choose to act otherwise. To survive we need us all at our very best, not feeling guilty that we are not at our worst. 

(Adam’s) Narrative Medicine

Tomorrow, Wednesday, April 12, I will pull a chair up to a table in the Medical History room in the IU School of Medicine, Medical Library. I join ten others–nine students and the professor, who are studying Narrative Medicine this semester. Consider this the preamble. In this post I rehearse my talking points, and I emphasize the importance of storytelling in medicine

Many of you following my journey recognize that I have been sharing my story for several months by way of social media–Facebook Live, this blog, monthly twitter chats (#BTSM), speaking in community settings, in academic venues–Marian University College of Osteopathic Medicine; this upcoming public lecture hosted by IUPUI Religious Studies Department on April 19, and perhaps more important than each of these are my regular coffee conversations with close friends and former colleagues, sometimes one-on-one, sometimes in groups.

Here are two theses, hypotheses maybe, which have always been there, just beneath the surface of my areas of interest, motivating continued study.

  1. Story telling is a long-honored and integral piece of our human experience. The content that comprises our stories vary widely by cultural traditions–and with respect to our friends who study myths and tropes, perhaps the content across cultures is not tremendously different, after all (consider flood and creation stories traced easily to many cultures to emerge from the Mesopotamia), but the point I wish to make here is more broad. The act of sharing our experiences, framing our narratives, and contributing to an oral tradition is a defining feature of our collective humanity, at large, and certainly features of our identification with a community or, more abstractly, a peoplehood. But this stands against the following, second hypothesis.
  2. We seek an objective worldview, so far as we think it is possible to achieve. The Western academic tradition employs the language of mathematics to describe the world on purely objective terms, purportedly void of subjective interpretation; physicists seek, through reductionism, the outlook that meaningful explanations are sought after only at the bottom-most level of the explanatory target: the level of fundamentality. That at some most primitive level the discrimination of distinct objects dissolves and what remains are, well, not even objects at all, but a collection of attributes, charge, mass, spin, and so on that stand in relation to one another.

These theses stand in seemingly stark contrast to one another: on the one hand, the anecdotal, narrative, story telling accounts, passed from family to family, friend to friend, peer to peer; multigenerational. These stories contribute the to a sense of community and the reinforcement of values indicative of exemplars borrowed from the community who now live on as the subjects of their celebrated narratives.

On the other hand, the objective, quantified worldview has little concern for the subjective reinforcement of values drawn from a community of origin, and instead is concerned chiefly with predicting outcomes from a set of initial conditions and governing principles. Given reductionism, determinism, and fundamentality, the evidence presented to us by contemporary physical theories are, by definition, stripped of subjective identity.

Where does the physician find herself? Her patients, flesh and blood; her recording of their symptoms locked behind a protective wall erected from the scaffolding called HIPAA. Our office visits call out for personal connection. Our medical record keeping warns against privacy breaches.

Is this the space–the gray area between the practice and the policy, that we find narrative medicine? Between the stories and the statistics? The physicians and the patients. Medical history gathering is the pathway through which the two may become connected. Especially for the chronically ill, the cancer survivor, the terminally diagnosed, that more so than in any other space physicians and patients are presented with the opportunity to recapture the first of my two hypotheses. That storytelling is attachment to a community, through that which medical school may drive a wedge; may serve to detach physicians from their patients; detach specialists from the bodies on which they specialize. The community can be rebuilt when we seek to remove the barriers the lead to detachment. When healthcare is viewed not as physicians and patients–two separate classes, but as members of a medical community, where medical professionals are accountable for the care they provide, and patients are accountable for investing in their health and wellbeing by taking seriously the relationship with their caregivers.

Like great storytelling, the hero of our narratives, the reinforcement of personal values we experience when seeking solace in our favorite stories–what Rita Charon calls the “sense of story,” might we find the strength to craft our own narrative, featuring ourselves at the center, and refusing to settle for medical professionals who are not compelled to listen closely while we tell our stories.

Wednesday, April 12, I will tell my story again, for the n’th time, but for the first time. It will be told to a room of strangers, yet, when our time together is over, the influence we have over each other will linger. This is only possible when we recognize ourselves in others, when we eliminate barriers erected in the name of responsible detachment to practice objective science and medicine, and we do this through the art of storytelling.

 

What Should Public-Facing Science Communication (#scicomm) of Cancer Research Look Like?

In this post, the first of two taking special interest in science communication (hashtag #scicomm), I offer my argument for the important role science communication #scicomm plays in sparking public interest in scientific inquiry, and closer to home, I make a case that #scicomm has a unique and vital role to play in educating our patient population to reinforce the notion of informed consent. A truly informed patient, I argue, experiences improved quality and prolonged length of life, not because they are science communicators, but beause informed patients make better decisions with respect to benefits and risks of treatment. The onus, then, is on science communicators to consider what their role may be in describing origin theories of disease, e.g. cancer, in a way that empowers the public.IMG_0210

 

The disease of cancer is prevalent: perhaps not surprisingly, given our near universal experience of having been touched by cancer in some way, through the diagnosis of a loved one, grandmother, aunt, brother, cousin, and so on, or struggling with our own diagnosis, so it is that cancer is among the leading causes of death in the United States. Identifying preventable causes of the disease largely drives decades-long improvement in patient mortality statistics. The identification of preventable causes of cancer is of great benefit to public health, as it drives legislative action to protect a citizenry from increased risks while acting as responsible stewards of allocated healthcare dollars, taking on board the well-supported hypothesis that prevention is less costly than treatment. Beyond prevention, we may also wonder what researchers know of the nature of the disease itself. Knowing that limiting exposure to certain environmental carcinogens, for example, allows researchers to know something of cancer by way of preventable triggers, but a curious researcher, as we hope all are, should want to know something of cancer qua cancer, as we might employ the phrase in philosophy. Knowledge of cancer in virtue of its causes fails to penetrate deeply into the realm of inquiry, the space where our researchers and theoreticians operate.

 

Here is a story to help us. My oldest son may ask why the moon looks like a big circle one night but can look like only a sliver other times? I would not be incorrect to tell him it is because different portions of the moon are illuminated at different times, but this response is not very satisfying. Anyone with kids knows the natural follow-up question is, why? Why are different parts of the moon lit at different times? Now I may respond that the moon itself does not shine, but the light of the sun illuminates the moon. The illuminated portion of the moon appears a certain shape to an observer on earth given the relative positions of the sun and moon to earth. My son will likely lose track of the conversation at some point. If he is interested enough, he’s had a snack recently, and the television is off, he may entertain me by paying attention while I build a model with a flashlight, his toys, and a ball to represent the lunar phases, but otherwise, he moves on and asks me the next night, why does the moon look like a big circle tonight?

 

Let’s shift back to our topic. Why did my friend get cancer? Your friend got cancer because he smoked. While not technically incorrect, this answer is not very satisfying. A natural follow-up is to ask why? Why did smoking cause my friend to develop cancer? Now we are beginning to seek answers to the types of questions that motivate our researchers.

These stories help lay folk like you and me, “the public” or “the nonspecialist,” those who have taken an interest in scientific questions, but who lack the requisite training, it helps us to engage more closely with academic researchers and their chief means of currency, the academic journal article. The answers provided to nonspecialists, like those I offer to my son, often are either unsatisfying given their nonspecificity and simplicity, or the responses are far too complex to be meaningful, and so nonspecialists are not allowed a seat at the table; no voice in the debate. Hence, we need models with flashlights, toys, and a ball. It is the responsibility of science communicators to build these models and to help nonspecialists along. Einstein reported that his earliest interest in seeking to understand the deep mysteries of the natural world was sparked as a child when he saw the needles of his father’s compass move seemingly autonomously. What deep mysterious forces are moving these needles?

Like his father’s compass did for Einstein is what I hope my conversations do for my three boys: spark their interest in understanding the natural world more deeply—whether that interest leads them to science, literature, theater, culinary arts, politics, machinery, craft, or engineering, there is not a single field or passion worth pursuing that does not benefit from a drive for deeper understanding of its “forces” that appear to the rest of us only as mysterious.

The burden on science communicators is great and the responsibility is one to take seriously because the models built by science communicators to help lay folks grasp deep concepts of the natural world by employing straightforward language, familiar concepts, and model building is not only an opportunity to help the public understand the power and priority of continuing to fund the sciences, but the public is also impacted in a deeply personal way as I may better come to know the hypothesized biological causes responsible for the development of my brain cancer, and I may find myself more genuinely invested in taking accountability for pursuing my treatment regimen if I better understand the mechanism of action by which my chemotherapy kills dividing cells by attacking their DNA, inhibiting mitosis (cell division), triggering cell death, or both.

Cancer mortality is declining, yes in some part to improved treatments, but largely mortality is lessened by identifying preventable causes of the disease. Prevention is good, going forward, but it is of little benefit to the 1.6 million Americans who received a cancer diagnoses in 2016. Effective treatment rests on a comprehensive and empirically tested theory of cancer’s origin. Patients and their caregivers are right to expect safe and accessible treatment that seeks to maintain or improve quality of life and prolong a patient’s life to the extent that is possible, while seeking to protect the first criteria. That is, my personal attitude toward treatment is that beyond some tolerable threshold, prolonging a patient’s life should not irrevocably violate the quality of her life. This balance is subjective, arbitrary, and in every case that time allows, the topic is best discussed openly with friends, loved ones, medical teams, and other interested parties. No treatment allows a patient to  evade death, but many available treatment options prohibit a patient’s wish to die well.

The private and often taboo topics suggested in the final sentences of the previous paragraph are hidden beneath a guise that medical researchers and clinicians invoke with the phrase, “informed consent”: that patients or their elected healthcare representatives, after having been made fully aware of risks and side effects associated with a given treatment, may elect to receive or decline a therapy with their consent, even at great risk to their quality and quantity of life, up to and including hastened death. It is the patient’s right, it is supposed, their autonomy, that a patient may choose to accept or deny treatment on the basis that the patient has been fully informed.

 

What I have said so far ties together researchers, clinicians, and patients in the following way: researchers benefit from intimate knowledge of pathology, clinicians tie their treatment recommendations to their understanding of the nature of the disease, and patients or their representatives consent to treatment on the condition that they be fully informed of the risks. Each of these parties are bound by their reliance on some working knowledge of the disease they either study, treat, or from which they suffer. Medical researchers and clinicians are licensed for their work after years of formal education, lab apprenticeship, or residency. The knowledge they have of their specialty warrants their expert status to make recommendations through research proposals, drug development, or clinical protocols. Patients consent to their recommendations on the presupposition that regulatory agencies and governing bodies maintain acceptable criteria of qualification and credentialing to place an acceptable degree of trust in these professionals.

A point I have made in public lecture and discourse is the following: medical professionals demonstrate their specialty knowledge and tacitly earn patient trust by trailing their names with such designations as MD, PhD, DO, RN, LPN, MSc, only to name a few, and with my asking for forgiveness for the many professionals whose abbreviated credentials do not appear on my list—their absence a sign of my ignorance, not your unimportance. I have received a craniotomy, eight MRIs, 30 sessions of proton beam radiotherapy, two CTs, tens of IVs, nearly 100 individual doses of chemotherapy, countless blood draws, routine vitals, and all I am is “state your name and date of birth.” When do I earn my CPT, certified patient, credential? I don’t, because I just made it up, and further because it flies in the face of the field of contemporary professional medicine whose aim is to treat patients and discharge them, not to celebrate them.

Should a patient be certified? Of course not, I am being rather absurd. Or am I? There are as many varieties of patients as there are diseses, and I am a patient, rather, I am a person who is driven deeply by inquiry to uncover the mysteries of the natural world. I stock my bookshelf full of medical school textbooks and popular medical science novels to intimately learn my disease. On March 29, 2017, I delivered two back-to-back lectures at Marian University College of Osteopathic Medicine (MU-COM) to mostly first and some third year medical students. Between lectures I was asked to make a slight modification from the first to second lecture by describing in slightly more technical details the characteristics of my type of brain cancer, glioblastoma. I mention this because while some may struggle to quickly find the words to describe the biological underpinnings of their disease, I have the opposite problem, that I must remind myself to trim back content before delivering an impromptu lecture on IDH mutations in high-grade glioma.

While I have not put in years of work as those serving on my medical team, and while I do not think that I set a reasonable baseline for what is or ought to be expected from patients, I do think that my hard work learning the competing theories of cancer’s origin enables me to be more engaged in my personal healthcare, and I am happy when my oncologist rewards my hard work by allowing our appointments to stretch to an hour, sometimes 90 minutes, as we wander off in conversation about theories of cancer’s origin or he reports about his experience at the recent conference he attended. “Precision Medicine” is the buzzword in cancer treatment these days, therapy that is made precise by targeting a patient’s cancer’s molecular markers, but this ability to identify my desire to share what I have learned, and my oncologist’s willingness to engage in this discussion, is sort of old school precision medicine. It is therapy that is targeted to my needs. It celebrates the informed patient.

I do set a bar for an informed patient. I ask my readers to consider the gulf between my hard earned knowledge of my disease, and the average knowledge of a patient without desire, training, means, or ability, given socioeconomics, education, interests, cognitive impairment, or treatment side effect profile. If you have had a conversation with me about cancer or heard a talk I have delivered within the past several weeks, you know that I emphasize that patients learn to tell their own stories to identify what is most important to them to protect as integral pieces of their quality of life and that medical professionals learn story telling to better inform patients on the patient’s terms, not the physician’s.

 

Public-facing #scicomm is not (only) about sharpening the scientist’s skills as expert communicator; it is not (only) about proving the worth of science writ large, or a specific domain of research within the broader sciences, it is not (only) to help the broad public constituency rally to disallow the disastrous cuts to science funding and frightening censure of science-driven federal administrations such as the EPA; no, the aims of #scicomm are to spark interest from our children, to empower people to seek deep mysteries of the natural world through embracing inquiry; most importantly, through my lens, #scicomm enables patients to become better informed about the nature of their diseases and mechanisms of their available therapies. In so doing, patients improve the quality and prolong the length of their lives. Next, they begin framing their own narratives to lift up the importance of science communication and motivate others to embrace inquiry and uncover the deep mysteries of the natural world.

Respectfully yours, Adam, CPT

[Note: If you are interested in hearing Adam deliver a public lecture on these themes and others, please join him for a public lecture hosted by the Religious Studies Department of IUPUI on the evening of April 19, 2017, 4:00pm. Light refreshments to be served beginning at 4:00pm. Lecture from 4:30pm-5:30pm. Topic: Well Wishes and Folks Theology: Religion in Interpreting Disease. The event to be held in room 409 of the IUPUI Campus Center located at 420 University Boulevard Indianapolis, IN 46202. For more information and to RSVP please click to open the Facebook event page.]

A Walk in My Shoes

This is a first-person experience story of living with three young children, a dedicated, hard-working wife, and, yes, brain cancer. My objective is to remind us to not discount patients’ chronic illness on the grounds that you cannot “see” the symptoms.

A parenting instinct activated upon the first steps taken by your first child heightens a sixth-sense ability to recognize sharp corners, protruding from dining tables, low counters, wooden chairs with arms, open cabinets, and playground equipment, to name a few of such hazards. With little thought, no break in conversation, with the finesse of a no-look pass into the paint, a parent will reach down to place a hand around the bottom of a protruding corner as her child stumbles by and ricochets off the safeguarding hand–rather than, say, ricocheting off the sharp corner. My family recently moved to a new home and our kitchen counter appears custom-built to the median height of 36-48 month old children. My corner-sense was tingling! Contusions avoided.

These days I recognize myself doing something else to safeguard these corners: no longer do I protect the bottom of the sharp edge to keep little skulls safe, I cup the entire corner to keep big skulls safe, too. See, I am prone to seizures, and I have before struck a kitchen table while experiencing a seizure.

Whitney and Adam, Post-seizure run-in with the dining table.

My seizures are well-controlled with Keppra and Vimpat, the peanut butter and jelly of the epileptic neuropharmacology space. Though as I discovered on the morning of March 6, after delivering a public lecture to 250+ attendees on March 5, followed by dinner with close friends, my fatigue and anxiety is pretty well correlated to seizure incidence. On the meds my unconscious convulsions are a distant memory from inpatient post-surgery recovery (and that one time at my folks’ with the table), but light-headedness, dizzy spells, and left-leg weakness are the trademark signs that I stretched myself too thin. I am experiencing them near daily this week.

The following is why. March 5 I delivered that public talk, March 13 I sat for a 90 minute interview rehearsing my story and discussing end of life planning for a palliative care website (IKS.com; here is my blog post about that experience), March 29 I delivered two back to back lectures at Marian University. In April our family moved homes, during the rest of the month I delivered a lecture with an IU School of Medicine narrative medicine course, and I delivered a lecture sponsored by the IUPUI Religious Studies department. I prepared a proposal for an interdisciplinary conference (Communication Medicine and Ethics) that was accepted; I will present in June. This weekend I am scheduled to visit Washington to conduct meetings with Indiana’s elected representatives and senators to advocate for cancer research funding.

This is all to say, I am busy. And I love it. Writing and speaking are therapeutic, I teach medical professionals to consider more deeply patient interactions, and I advocate on behalf of fellow patients and survivors. Advocates like me are preparing a better road for you if you face chronic illness. Please reach out and invite me to address your patients, faculty, medical professionals, clinicians, nurses, chaplains, and so forth. It is my passion, and I am good at it.

Back to the topic: I am pretty worn out these days. How am I feeling? Not great. I’m safeguarding the top and bottom of each corner I pass for fear a mild (or major) seizure incident will send me, head first, into the sharp edge. I require a cane for balance, and I “furniture surf” through my home to keep from losing balance.

The following are symptoms I experience; in some cases, I offer actions you can try at home to emulate my symptoms–clear the area of sharp corners!

  • Headaches, local: these are localized to primarily the area of my surgery (craniotomy). There is a divet and line tracing the incision and partial skull removal where the bone is fusing. Consider a broken arm and dull aches even after cast removal. Examine scars on your body with your fingertips–broken bones, surgical scars, places where a laceration required stitches, and so on. Let your sensitive finger tips distinguish these areas from unblemished tissue. Now imagine these vulnerable areas are on your head. My “head divet” aches.
  • Headaches, global: I experience near-daily general headaches. These daily headaches are often tension or compression headaches. After resection of a 71mm mass and edema my healthy brain tissue is reclaiming available space in my skull. My parietal lobe healthy tissue is moving back toward the occipital lobe. Squeeze a few inches of muscle tissue in your arms or legs and consider how moving tissue feels with respect to connective tissue and your skeletal system. Tissue is shifting inside my head.
  • Motor deficits: fatigue exaggerates my motor deficits, and chemo makes me very fatigued. Think about your last leg day at the gym. Jello legs? My left leg feels like this nearly all the time, and my right leg bears the compensatory burden. My left hand is slow, and anything held for long periods of time in my left hand is almost always tilted, spilled, or dropped. (“Oh, Lefty,” my wife and I will say to ward off frustration with humor.) My left-hand fingers and thumb are lazy while I type out texts, tweets, and emails.
  • Sensory deficits: communication between nerves and my sensory cortex is damaged. I often feel sensations on my left leg, but I am unable to locate where or what these sensations are without visual input. My leg and foot tingles and feels numb. 
  • Proprioceptive difficulties: related to sensory deficits, I struggle to locate my left side in space. I often bump into people and things given a spatial and sensory left side “blind spot.” Try this, find a step, stand on the step and let your left leg suspended above the floor. Close your eyes and move your foot and leg in a big circle, hovering over the ground, then stop and try to tap the ground, no looking, this is how each step with my left foot feels. Or close your left eye, keep your right eye open, and make an obstacle course in your home around tables and chairs.
  • Light-headedness: during my most fatigued days I feel like someone has taped a helium balloon to each side of my head, and the feeling–though not the visual experience, is wayward and wobbly, swaying back and forth.

It is easy to neglect the symptoms of chronic illness when we do not “see” them. It is easy to think of me doing well, and think, Adam is so active, he is in great shape. Do not think that in the absence of oxygen tanks and chemo infusions that I must be doing OK. Do not think that because I am able to speak publicly, to accompany my family on errands, or because I have a date night with my wife every few weeks that others are granted license to state how I am feeling. It is almost always better to ask me. “How are you?” Doesn’t feel quite right, but, “how are you feeling today,” is good.

My talks and other activities are not done in the absence of symptoms but despite them.

Please don’t mistake this honest (and at times assertive) post as a call for acknowledgment or recognition, but as a reminder that few of us are granted access into the inner lives of our friends, family, and acquaintances, but inaccessibility does not warrant assumptions.

Let us seek to walk in each other’s shoes before critiquing their fashion sense.

I am Not Political. I am Compassionate. A Take on Policy from a Disabled Person

I am disabled, officially. By the definition put forward by a private disability insurer and the adjudication rendered by the Social Security Administration, I am disabled. It is worth noting that my disability status is temporary. I am at present monitored on a three-year cycle to maintain my disability standing. Of course, three-year survival expectancy for the disease, which has garnered my disability approval, is around 5%, when reviewers come checking to see if I am still disabled in three years, there is a chance I will be deceased. Certain further “benefits” available to the “permanently” disabled, including discharge of public student loan debt and the ability to count my monthly disability payments as “income,” are withheld from my family given my “temporary” status. Again, temporary until death, the ultimate “permanent disability.”

 

You might want to respond that disability should not excuse me of debt that I entered into under sound mind and body. Repayment is my obligation. This would make sense were it not the case that if I return to work and earn income to pay toward my publicly held debt I risk loss of benefits status, in which case, followed to logical conclusions, your argument against my debt discharge is an argument against disability status, generally.

 

I have more on this. I become eligible for Medicare 24 months after date of disability. While you tune into nightly news coverage of the ACA, AHCA, repeal and replace debate, know that consequences are not only reserved for a theoretical abstraction, 24 million without coverage in a decade, but there are very real impacts to my healthcare coverage. If you need to put a face to those facing loss of coverage, [insert my face here]. I now have a pre-existing condition, so rolling back protections make me vulnerable to loss of coverage, if I were to shop the market. If you do not like the idea of government mandated, regulated, or provided healthcare, do you sincerely trust my life expectancy to the whims of the private sector boardroom?

 

My debt to income ratio is terrible because my disability payments do not “count” as income, given my temporary status; hence, Whitney and I cannot qualify for a mortgage. We are moving from my parents’ home to a rental next week. In under a year I have lost the ability to drive, lost the ability to work, we sold our condo to accommodate for our loss of income and my physical limitations navigating 16-steps to our second floor home. We have burdened my parents with moving our family of five into their single-family home. Thanks to the very generous donations of friends, family, and colleagues, we are in a position to manage our monthly budget, but we cannot be qualified for a mortgage and must pay rent, which is a monthly expense two hundred dollars more than mortgaging the same home. This is the first of many losses of opportunity because of our lower income. We do not have the money to earn home equity, and so the cycle of status quo continues.

 

My disability payments are just over half of salary I lost at time of disability, which is a big “pay cut,” if we call it that, but again, a hidden cost here is the inability to earn more; this inability manifests itself in two forms: first, I was on a fast-track at my previous employer to promote into higher positions and with them, increased compensation. I am not able to work those positions at that employer because of physical limitations and because it would disqualify my benefits status. Hence, my disability is not solely loss of salary, but loss of future earnings potential. Second, if I return to work at an even part-time status I risk loss of benefits, and if I earn more than federal poverty line my publicly held debt will not be discharged, even after three years. You know, if I live that long.

 

I benefit from government assistance, which I receive in monthly payments derived from an algorithm taking as input variables my years of employment, salary at time of disability, number of dependents, and amount I have paid into Federal Social Security programs during my time of employment. When you pay your taxes, you are, albeit indirectly and rather tenuously, also paying for the out of pocket expenses to which my family is accountable for securing my medication, office visits, imaging procedures to monitor disease progression, and so on.

 

Let’s put it this way, I am paid in disability payments from the government so that I may pay a private insurer to help pay for the drugs manufactured by a private company, who also pays lobbyists to influence the government to vote this way or that.

 

I am not political. I am compassionate. I am kind. I think love wins, I think women possess the right to choose, and this right should not be overturned. I think that the pursuit of life, liberty, and happiness, can only be realized if it is presupposed that happiness is contingent on protection of personal health and wellbeing. The mistake of the last thirty, forty, fifty years is to politicize those things such that my base line compassion is now somehow taken as a political stance.

 

I think I am entitled to the best treatment options, not because I am white and middle class and because I used to have a good job, before I didn’t, but because who doesn’t want to chip in a few bucks to help out a family like mine—and if you say that should not be legislated, I say, well, it should be, because there are a few assholes out there who answer my rhetorical question with, “nah, I’d rather not.” To that group of folks I say, join me at home when you open a medical bill for a surgery that costs $115,000, and if you don’t want to join me there, crying tears of relief that I have coverage, then join my wife at my graveside. At least she won’t have to pay back my student loans.

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/