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. 

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.]

You are Invited! Inside My Head: The Personal Story of My Walk with Brain Cancer

Local (Indianapolis area) friends and supporters, I am excited to share information about a public “talk” I am giving on Sunday, March 5, 2017, 3:30m-4:30pm on the south side of Indianapolis in a large multipurpose room at Friedens UCC, 8300 S Meridian. During this narrative/anecdotal speaking engagement, I will share lessons gleaned from my battle with brain cancer. I hope the talk is interesting to people who have been following me online or through my blog, and I intend for the “lessons” to be applicable to a wide variety of folks.

The talk will give life to the themes you find here in this blog: considerations of the patient experience, insights into the traditional doctor-patient relationships, and thoughtful words about engaging with friends or family who face difficult medical diagnoses. I will bring my narrative to light, and I hope we may connect socially after my talk as we enjoy some time of refreshments in a casual environment.

The following is a link to the public Facebook event. Please feel free to add yourself to RSVP, invite others who may have an interest in the event, and share to your wall or a friend’s.

Facebook Event Page: Inside My Head: The Personal Story of My Walk with Brain Cancer

For non-local followers, I plan to incorporate Facebook Live into the event. I will not say much about that here and now, since I would rather see friends join us in person than find us online, but I hope to reach many friends, and either live broadcasting or post-event video sharing, I will be sure to accommodate whoever can’t attend in person.

Ideas for topics to discuss during the talk? Leave me comments, email me, or tweet tweet tweet.

Can’t wait to see you Sunday, March 5, 3:30pm! Be there or, you know, be [ ].

Click the following link to download a PDF even announcement. Feel free to pass the PDF on to friends via email: ahayden_inside-my-head_3-5-17

 

2016 Statement on Cancer

Two years ago, December 26, 2014, I had a seizure (undiagnosed).

This year, December 25, 2016, I had a seizure.

I have brain cancer, and like many, mine presents with frequent seizures. It took 18 months of “it’s probably stress related,” and “it could be vertigo” to get an MRI ordered (May, 2016) to investigate my dizziness and left-sided weakness and reveal a primary brain tumor. Since, I underwent (awake) brain surgery, inpatient recovery, inpatient rehab, chemo, radiation, and now monthly chemo cycles. I continue to struggle with seizures as part of my cancer. I vowed not to be the cancer mascot; not to fill your feeds and timelines with Adam and his cancer story. “I’m more than my disease,” I quipped.

New strategy: fuck that.

I am the cancer mascot on behalf of an estimated 12,000 newly diagnosed glioblastoma patients this year; 10,000 of those folks won’t live much past a year. I’m 7 months out from formal diagnosis. In these 7 months after surgery, I taught my left leg to walk again, my left arm to type again, I’ve learned cell anatomy, cellular metabolism, intro to genomics, and read extensively on competing theories of carcinogenesis. I am reading medical textbooks on biochem and molecular biology. I am graduate trained in the philosophy of science. I am strong; smart; driven. I am learning my disease.

If you think I cannot learn the biological features of my cancer..

If you think I cannot advocate to medical professionals on behalf of brain cancer patients…

If you think I cannot raise money and awareness for brain cancer research…

If you think I cannot contribute meaningful academic work with respect to the explanatory framework and ontology of cancer to benefit the medical oncology research community…

If you think I cannot expose at least one vulnerability of my aggressive cancer, with positive impact to clinical outcomes…

Prepare to have your beliefs revised.

2017 is my year.

Stay tuned.

Learning Lessons this Holiday with Cancer

Defcon: Seizure

Light-headedness, bordering on dizziness, headaches, worsened by fluorescent lights, anxiety, and uneasiness, especially in large crowds, weakness through my left leg, a three-pound battery backpack and electrodes taped to my head. It is time for our preschooler’s (the older two boys) Holiday Program. I am a six-foot-two, awkwardly gaited, cane-hobbling attention grabber as I shuffle through the chaos of hundreds of young families to find seats and keep a hand (or at best an eye) on our youngest. Grandparents are there to help us, and there is an unspoken young family code that if an 18-month old is running by, drooling and smiling, you are licensed to scoop up and restrain this child-on-the-loose until a parent or guardian arrives to relieve you.

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Left to Right: Isaac, Noah, Gideon; Holidays, 2016

Whitney and I volunteer at our kids’ school regularly: field trips and “special days” celebrated around birthdays, distributed across our two boys we have enrolled, and the three years we have had at least one child attending, we’ve volunteered at Crabapple Creek often. Lately these events have totally drained me. The fatigue and other physical challenges put me in defcon five for seizure risk. My body has taken to rather sudden, mild seizures when I place too much stress on it. Like an overheating engine, after a long day, a stressful event, or over stimulation from bright lights, patterned and textured floors, or colorful walls, my brain short-circuits. I experience the familiar twitchy, dizzy, motor function loss characteristic of seizures. I usually feel it coming a few seconds before seizure strikes, and I must sit down. Immediately.

A War of All Against All

Thomas Hobbes wrote about the state of nature, a competitive, every person for herself, war of all against all. I have read Hobbes a handful of times, as I suspect many with at least a BA in Philosophy have done. My closest reading of the Leviathan, where Hobbes articulates his theory, happened in a History of Philosophy course, Society and State in the Modern World, or something like this, a seminar-style discussion course.

Hobbes imagined a violent natural state, red in tooth and claw. Each person has a natural right to survival, and in the face of limited resources, our competitive drive and natural rights lead to a life that is “solitary, poor, nasty, brutish and short.” Hobbes proposed our only path toward peace is to acknowledge that our right to survival is better protected by cooperation, and so we contract together and appoint a government to enforce our pact. This is one theory of social contract: Rousseau articulates an alternative view, but that will have to wait for another time.

My lesson from that seminar, and a close reading of Hobbes, is this: the really frightening thing about the natural state is not the literal violence of a war against all, but it is the insidious, psychological threat of the potential for war, losing one’s natural right to survival. The war is psychological; fear-driven.

Navigating big events, especially those with young families, hundreds of quickly moving children, and overstimulation of being in the center of these things, reminds me of this Hobbesian view because I feel the strain of this psychological war. I am fearful of seizure. Where could I sit? How could I avoid a scene? What if I lose consciousness? How close am I to Whitney, who will know what to do?

I am consumed by my fear, and I fail to engage meaningfully in the event.

Hobbes instructs us to, whenever possible, pursue peace. Create a contract for cooperation. I apply these lessons to my own psychological war, defcon: seizure. I seek the cooperation of spouse, friends, family, and remind myself to be honest, to trust others, to acknowledge my right to self-preservation is better protected by setting my individual rights aside and contracting with those in my community. Hobbes imagines this will be a challenge because we are competitive by nature. For those of you who have had to rely on others, given medical, financial, or other personal hardship, recognize the difficulty in sacrificing your own rights, but also notice the value in cooperative living. It is difficult to admit you need help. But to be fully present, we must give up our selfish, first-person view, and rely on others.

Dealing with Ambiguity

The Holiday Program includes a dramatization of the nativity. Our Middle child was the “blue king,” signaled by his blue construction paper crown. Our oldest was Mary’s donkey. Before the nativity the kids show off their “circle time,” a daily school activity. Each child is assigned a different “job” (“Continents,” “Solar System” “Weather Watcher” “Line Leader,” etc.) to perform and learn by doing. In the comfort of the classroom the children happily perform their “jobs” without much goading from the teacher, but under the proud gazes of grandparents, flashing camera bulbs, and strange surroundings of a new environment, the children are less cooperative. I am impressed by how well the teacher and aid handle the kids’ uncertainty and anxiety.

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Noah, the Blue King; Holiday Program, 2016

I once held a position, Senior Training Specialist, and one of the responsibilities included coaching leaders on creating and executing personal development plans with their direct reports. These “PDPs” were competency-driven, meaning we coach behaviors rather than specific tasks. A competency that many struggle to get right is dealing with ambiguity. No surprise: most of us hate change, we fear uncertainty, and we like our routines: we are creatures of habit, we like to say. To successfully deal with ambiguity, the behaviors include being present in the moment, knowing your resources, communicating openly, and making decisions with limited information, not waiting to see the whole picture.

Few deal with ambiguity better than preschool teachers. Our CEOs should shadow teachers as required “on boarding.” Better yet, more teachers should be made CEOs, or at least paid like it! Teachers live in the moment with their kids, looking for opportunities to turn every day experiences into lessons, going with the flow, embracing change, helping their kids be part of a process rather than only gears in the machine. We all want to be part of something, and working in cooperation helps us achieve a common goal.

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Isaac, Mary’s Donkey; Holiday Program, 2016

Showing Up for the Holidays

Cancer is filled with uncertainty. The rhythm of my life is monthly chemo, bi-monthly brain scans, repeat until the tumor grows back. In the words of my neuro oncologist, “the probability that this tumor will not recur is highly unlikely.” My life is waiting and uncertainty. If brain scans are stable, that is, show no tumor growth, what therapy is working and should continue? If we see tumor growth on the next scan, what treatment failed?

My therapies include (or have included) radiation, chemo, Optune Tumor Treating Fields, ketogenic diet, diffusing essential oils, and nutritional supplements. I monitor these therapies closely to narrow variables so success or failure can be attributed to a therapy, but all this is dealing with ambiguity, attempting to make decisions based on limited information.

Of course the biggest uncertainty that my wife whispers in my ear as we share a bedroom with our sleeping baby in the crib beside our bed, usually the older two boys have found their way in to snuggle, and the five of us are tightly packed in these close quarters, reminded that we’ve given up our own space to move in with my parents, and they have given up their space to welcome us, is that each Holiday, this Holiday, could be my last Holiday, or the last Holiday that I feel well enough to be out of bed, attending Holiday Programs.

This is why I go to see my kids dramatize the nativity, even though I attract strange looks, accidentally step on people’s feet, and risk seizure. This is why I show up, because each moment with my family is a sacred moment.

Learning Lessons

We can draw lessons from my experiences because they are not only my experiences: they are our experiences. We all face uncertainty. We all face difficult decisions. We all have individual goals and have to balance our desires with those of our community. What I am learning through writing this blog is that dealing with a grade IV glioma, a primary brain tumor, a disease without a cure, is that my life experiences are distilled, different in degree, maybe, but not different in kind or type from the challenges we all face. We walk a similar journey. I give voice to our shared struggle like tasting a concentrated ingredient on its own makes it easier to pick out in a dish.

Here are some more of the lessons I am learning this Holiday season:

  • Put your individual hang-ups aside and recognize we all need help from family and friends. Focusing only on yourself leads to a Hobbesian state of nature: psychologically damaging and fear-driven. Ask for help! Cooperative living is peaceful living.
  • Do what our teachers do: deal with ambiguity. Do not fear uncertainty and change; embrace it. Become comfortable with limited information and closely monitor when your attempts at solutions work and when they don’t. Adjust next time accordingly.
  • Most importantly, show up! We may have a hundred reasons not to attend an event, family gathering, party, dinner, or whatever, but taking on a challenge today and making it through is better than putting it off until tomorrow and never getting the chance.

Happy Holidays, friends! I’ll see you next year. 😉

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Me and Whit, watching the kiddos; Holiday Program, 2016

One Day, I Will Die

Sitting on the couch at my parents’ house, my older two boys bounce on the cushions beside me, I flick my thumb upwards against the cracked glass screen of my iPhone to scroll the mobile-optimized pages of Vice to read the article, The First Time I Let Someone Die (December 10, 2016).

Tears well in each eye. The corners of my lips turn downward like the taught angles of a freshly laundered pillowcase, pregnant with a newly fluffed pillow. My index finger and thumb form a right-angle and rest above my chin, below my lower lip, squeezing my cheeks on either side, the webbing between my thumb and finger in the formed L is scratched by the coarse hair of my beard. My bent elbow rests on the soft fat of my belly and my posture is convex or crescent moon, as I fold in on myself, barely sobbing, beside my children playing.

Dr. Rahul Jandial’s piece is a personal anecdote borrowed from his neuro ICU residency. The article recalls a patient Dr. Jandial was unable to save, her family, and the circumstances of her car accident and brain swelling, leading to her inevitable death. Dr. Jandial draws us into his narrative and offers a glimpse of his patient’s physical scars traded for the emotional scars he continues to carry.

Please follow the provided link to read Dr. Jandial’s article. It is important. (Of course, first, I hope you finish mine.)

 

I sob often, and I am not ashamed to admit this is not a post-diagnosis development. The proper conditions regularly result in my tears. These conditions include, but are not limited to, the following: romantic comedies, deep, meditative breathing, Neutral Milk Hotel live recordings, powerful personal anecdotes, and lying beside Whitney in bed, holding hands, wondering how long or short our lives together will be cut.

Dr. Jandial’s contribution to my Sunday afternoon reflection meets the previous criteria. You see, we humans are deeply empathetic, and when we read an account like Dr. Jandial’s, we imagine ourselves as the young resident, or the patient, or the patient’s family, or, many of us need not imagine at all because we are the patient; we are the family; we are the resident.

I sob this afternoon because each contemplation of my own mortality introduces a new lens through which I view the future inevitability: my own death. My empathetic connection to Dr. Jandial is that one day my physician will let me die. I am the patient whose pathology revealed the inevitable march of disease toward patient death. I empathize with my doctor, and I sob for her. I sob for myself.

This will strike many of you as uncomfortable, as if I am admitting defeat too early in the battle. To signal a white flag of surrender is not why I write this post, at least not anymore than I think Dr. Jandial published his narrative only to remind us that often medical intervention fails. The motives are much deeper, and the lessons available for us to learn, if we take the opportunity. Dr. Jandial reports, “To take care of the dying you have to become comfortable with death.”

So it is with glioblastoma.

To properly care for myself. To be an informed and empowered patient, I must not only confront my prognosis, but in fact, I must become comfortable with it.

 

Before surgery I wondered if my heavy eyelids would gently shut and never again open. In the days leading up to my surgery the closing of my eyes became ceremonious, ritualized, rehearsed, and well practiced. I closed my eyes to usher in death. What would this be like? I wondered if I would be aware of death, if my body would sense my slowing pulse, my labored breathing, or only the heavy eyelids would signal death.

These thoughts were somewhere close to the surface when I gripped the back of my hospital gown to pull it closed and shuffled to the bathroom in the pre-op wing of the hospital to be prepped for surgery. I passed by other rooms where other patients were prepped by other nurses. I received an IV line, my clothes and possessions were bagged like I was spending a night in the drunk tank, and surgeons, OR nurses, residents, family  members, and the chaplain marched in and out, drawing the curtain open and closed with dramatic theatrics. Maybe this was a dress rehearsal. The actors entering and exiting the stage. The curtain opens and draws close. When it was time for my performance, I squeezed my wife’s hand.

Exit stage left.

Curtain opens.

Break a leg.

The fluorescent lights passed overhead as my gurney wheeled down the OR corridor. Hypnotically these lights clicked by like street lamps through the window of a speeding car. I was surprised that doors to other operating rooms opened and closed. I wondered if those same patients I hid my modesty from earlier were now laid bare on the OR tables as I sped by. The white lights washed out the details. Soon would be my room. My eyes squint from the white fluorescence of the operating room. My eyes gently close. I feel my pulse. I feel my breathing. I am alive. I am prepared. I am comfortable with the craniotomy we must now perform.

The surgical resection of my 71mm primary brain tumor was a complete success: a gross total resection. Nearly 95% of the tumor removed. A gross total resection is a strongly positive prognostic indicator. My ability to remain awake, calm, and responsive during surgery accomplished two things: first, my my left-sided sensory and motor function was protected, preventing left-sided paralysis, and second, my patient-surgeon-partnership facilitated aggressive tumor removal, adding months or more to my expected survival.

My memories are vivid of the procedure, and I recall one of my surgeons telling me, “Dr. Kenner will make you a little drowsy for us to close.” I recall the three-point, 30-PSI fixation device unscrew. Then my head cradled and wrapped in bandages by the competent hands of my surgeon. Soon those fluorescent lights click by again, this time back tracking our earlier route, now heading out of the OR and toward recovery.

 

It turns out (surprisingly) the (awake) brain surgery proves to be least challenging obstacle to overcome. In the months since I have received PT, OT, neuropsych evals, chemo, radiation, seizures, and a wearable electric cap to treat my tumor with electric fields. Nearly each day I scour the internet for new case studies, clinical trials, research papers, and genomic information to inform the care, treatment, and new frontiers for dealing with my malignant brain cancer.

I am often irritable, short-tempered, quick to scold my kids for throwing food or refusing to dress for school. I am on long-term disability. I cannot drive. I am stir-crazy. I am praised publicly for inspiring others with my positive attitude, but I often hurt the feelings of those closest to me.

I am seeking comfort in the face of difficulty. Dr. Jandial reminds us that our efforts may fail, and failure leaves a scar. The lessons are in the healing, and I learn more each day.

What To Say to a Cancer Patient

Scooped by the NY Times

Dr. Stan Goldberg is a Professor Emeritus of Communicative Disorders at San Fransisco State University and the author of the recently published book, Loving, Supporting, and Caring for the Cancer Patient. Dr. Goldberg’s book is the basis for a recent NY Times Personal Health Column, What Not to Say to a Cancer Patient (November 28, 2016). This topic has been on my mind for some time–since my time in the hospital, anyway (May through June, 2016). During my few week stay I happily received many visitors–thank you to those who carved out time to spend with me in a sterile hospital room, seeing the world through double-paned windows.

Dr. Goldberg’s book, and the Times column based on it, is a helpful resource before visiting a friend or family member in the hospital or at home, and if your life is affected by a cancer diagnosis, for you or someone you care for, I encourage you to look into both. As we say on Twitter, a retweet is not an endorsement. Here I voice concerns with the Times column, and I reinforce points where my suggestions converge with Dr. Goldberg’s. Ultimately, I aim to support readers in their next conversation with a friend or loved one.

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My View to the World: Acute Inpatient Rehab Room 202, June, 2016

I hoped to write on this topic ahead of Thanksgiving, thinking I would frame the post as a pre-family-get-together primer for visiting the cancer patients in your life. Unfortunately, I was due up for my next Temodar (chemotherapy) cycle the week of November 21. The “5/23 TMZ cycle” as those of us with patchy hair and pending, possibly approved disability claims call it. The phrase, “5/23” represents the standard of care (SOC) monthly chemo cycle for brain cancer patients: 5 days on, 23 days off, Temozolomide (TMZ) a chemotherapeutic agent, administered orally, before bedtime, one hour following Zofran, with nothing else to eat or drink two hours before or after. The five days of TMZ cumulatively chip away at your energy level until you bottom out on days four and five. These would be good days to challenge me to a foot race.

The remaining 23 days of the month are spent recovering lost energy from the first 5. Usually labs are drawn in the couple weeks following the first 5 days to make sure blood counts are within range–Temodar (Merck’s brand name for temozolomide) targets rapidly dividing cells, including healthy cells, for example, the workhorse bone marrow, cranking out blood cells. Blood and platelet counts can precipitously drop while on Temodar. If all looks good, I am usually feeling pretty well in time to receive my next Temozolomide shipment, rinse and repeat for the next 5/23 cycle.

With Thanksgiving coming and going, the chemo cycle, not feeling great by the end of the holiday week, I didn’t push out my planned post: “What to Say to a Cancer Patient.” I thought, hey, no worries, I will write on the topic a couple of weeks into December with a similar theme. Maybe revised to include an addendum for making an appropriate greeting card selection!

Then…

I was scooped by the Times!

The Times ran their column Monday of the present week, and I saw my once hot iron begin to cool. Did I miss the time to strike? I have decided to blog on this topic anyway, and I have decided to do so for three reasons: (1) I have a commentary I would like to lay beside the Times piece (who’s surprised?); (2) this topic is important to me. I started jotting notes in my journal two days following my craniotomy. Leveraging my experience to help others has been my goal from the beginning of this process. That goal continues to sustain me. Nothing is quite so uplifting as receiving a positive response to a genuine expression of the self. This is what my writing represents, and your feedback, likes, shares, and comments are powerful. Thank you for reading! In the theme of this blog, hopefully thoughts I share here carry you into your next difficult conversation with family or friends, furthering my goal of leveraging my experience to support others. And (3), let’s be honest, our loved ones need some help in this area!

It is difficult to visit our friends and family in the hospital or at home who are facing a scary medical diagnosis, and few diagnoses are scarier than cancer. The analogy I use is to compare the experience of visiting friends in the hospital to non-parents who visit their friends’ newborn infant. What do I say? “Hi, baby. Welcome to Trump’s America”?

“Can we hug?”

“Should I use hand sanitizer?”

“How are you sleeping?”

“We’ll keep your spot for Friday night Texas Hold’em.”

Parenting is something that happens to at least half our population, yet, when it happens to us, we wish we had a manual for knowing what to say, how to act, how to help the friends it has happened to, and so on. I’m not saying having kids is like getting cancer–though, great fun could be had exploring that space, but many of us spend our 20’s trying to avoid becoming parents, as we near our 30’s the incidence of parenting become more common, yet some of us still think, it couldn’t happen to me!”

Cancer is widespread, too: some 40% of men and women will be diagnosed with a form of cancer during their lifetimes, reports the National Cancer Institute. Nearly 1.7 million new cancer cases will be diagnosed in 2016. To make those stats hit closer to home, well, my home, anyway: glioblastoma (GBM) is the most commonly diagnosed malignant brain cancer, with 12,000  cases diagnosed annually. Only about 10,000 of those folks will live longer than one year. Yikes!

Cancer is big! Cancer is Scary! Cancer is confrontational, in your face, imposing! Many of the treatments include side effects worse than the disease. Patients are conditioned to accept hair loss, nausea, and fatigue with the same dispassionate concessionary stance as insurance copays and terrible hospital cafeteria food. Yet, like automobile accidents and house fires, we rarely prepare for a cancer diagnosis personally, and we are never quite sure what to say when a diagnosis is given to a close friend or family member; though, it is statistically inevitable that nearly half of us will be on the receiving or delivering end, sharing bad medical news with loved ones, at some point during our lifetime.

So here I am. I write with the goal of helping caregivers, friends, and family feel more confident engaging their loved ones facing a cancer diagnosis and helping my sisters and brothers battling cancer that our visitors may not be quite so uncomfortable.

If you take nothing else away form this post, my best advice is this, borrowed from the coaching and consulting resource, Fierce Conversations, “let the silence do the heavy lifting.”

“How Are You?”

The Times Column emphasizes two key messages: (1) avoid stock questions and platitudes, and (2) offer specific, actionable assistance to patient-friends to provide meaningful support during a difficult time. The reasons for (1), on the surface, anyway, are fairly obvious. It is difficult for a patient to meaningfully respond to the prompt, “How are you?”  The question strikes us as too shallow to address someone who is hospitalized, facing a difficult diagnosis, or recovering from surgery. This is easy to see in the abstract, for you right now, reading this post, it is obvious, nearly cringe-worthy, to imagine walking into our friend’s hospital room and almost-cheerfully ask, “How are you?”

The scene is too extraordinary for such an ordinary question; this juxtaposition gets at the audacity of the situation.

This is an obvious point maybe, but do not judge too hastily. What presents as obvious on paper, is often more complicated in real-time. This is the differential diagnosis of interpersonal communication: what can I possibly say to my friend who quite well may be dying?

“How are you?”

How do you begin the conversation? What will you say, standing in the door frame, your friend, in bed, gowned, electrodes adhered to his chest, nested in coarse, black chest hair, wires twirling, twisting, stretching to beeping, whirling, buzzing, printing, machines. Two or more IV bags drip through a line, into his exposed arm, bruised in the creases of his elbow from blown lines and stubborn sticks. Train tracks of shiny staples flash in the fluorescent lights like a zipper across his shaved head. Standing there, in the door frame, you take in the scene. You almost catch your breath.

Eyebrows lift, attention drifts, if only for a moment. Then. Unexpectedly.

“How are you?” you ask. The words spring free of your lips.

“Shit.”

“I mean.”

“How are you feeling, man?”

Beep. Buzz. Print, print. Nurse walks in. The conversation gasps to a halt like a child, choking on a hard candy.

“Go on, sweetie, I’m just here to get vitals,” says the nurse, uninterested, busy, overworked.

You glance at your friend in bed, he’s pulling back the sleeves of his gown to allow for blood pressure, maybe draw a vile of blood from the IV. He softly smiles at you, nods, encouragingly, inviting you to continue.

“How are you?” you repeat, with the hesitation of someone who has been impromptu asked to deliver the grace before a meal at your in-laws.

“Other than the brain cancer, I’m in great health!” I often joke with friends, but like each joke that is, “funny because it’s true,” my response is designed to make you squirm, if even only a little, because, “How are you?” and “cancer” are not compatible in the way that “What’s the weather?” and “sunny” happen to be.

“How’s the weather?”

“F5 Tornado, and cows are literally flying through the air.”

Lesson: identify and eliminate stark contrast and juxtaposition.

“A Heightened Sense of Vulnerability”

The Times article cites another reason for avoiding the question, “How are you?” This “rattled my heightened sense of vulnerability,” related Dr. Wendy Schlessel Harpham, recurring cancer survivor and author. Dr. Harpham recalls feeling the need to fight the fear and grief that fills the room, following a rather mindless inquiry, “How are you?” Often the patient is put in the position to console the visitor.

Dr. Harpham suggests visitors sit as a calm and quiet presence.

In other words, let the silence do the heavy lifting.

Dr. Harpham is right, or at least, her experience is consistent with my own. I often take a deep breath after saying goodbye to visitors and wonder to myself, “was that visit for me or for them?” My hypothesis is something like this: there is a correlation holding between a patient’s vulnerability and a visitor’s comfort level. Dr. Harpham writes as though she is uncomfortable confronting her heightened sense of vulnerability. This is her truth and story to share, and it is not mine to critique. I will say in my experience, I gave myself over to the process very early on, and I think a balance of surrender and control lay at the heart of vulnerability.

My neurosurgeon called the day before my craniotomy to inform me that after review of my functional MRI images and discussions with his colleagues, he decided to perform the surgical resection of my brain tumor while I was kept awake with conscious sedation. This approach to the procedure would allow me to respond to questions and commands to protect the maximum degree of motor and sensory function while aggressively resecting the maximum amount of tumor. I received two more telephone calls: one from the anesthesiologist and a second from the head OR nurse. Each of these three calls invited me to surrender more and more of the control over the process I naturally sought to cling to, yet, where I would have control, these opportunities were emphasized by my medical team. Namely, I would be asked at some point during the surgery how aggressive I would like my neurosurgeon to be, resecting tumor, at the cost of permanent function and sensory loss to my left side.

My medical team made clear where I would be in control, so I felt more comfortable abandoning the areas where I would exercise very little control. I am vulnerable because I am willing to surrender control. I surrender because my medical team helps me understand the choices that are mine to make. My vulnerability helps my visitors feel less doom and more comfort, and so the visits are shared experiences.

Lesson: identify and surrender some control in exchange for embracing the autonomy you have.

What To Say to a Cancer Patient

The Times article concludes with a number of “dont’s”to avoid saying to your friend or loved one. The topics to avoid includes light-hearted remarks, discussions of why the diagnosis or cancer type is “better” than another, estimates for prognosis, or suggestions for treatment. This is a good list, and this is a bad list and both for the same reason: these are the topics we all really want to talk about!

The Times column is titled, “What Not to Say to a Cancer Patient,” but defining something by what it is not is notoriously difficult and abstract. Better to say what it is, and own it. This is why I call my post What To Say to A Cancer Patient.” It is good for the patient to discuss cancer type, treatment strategies, prognosis, clinical trials, side effects, end of life planning, and so forth. Visitors, friends and family members, loved ones, provide a safe space to explore these topics! So do not avoid these topics, do not think “what not to say,” but instead, consider, “what do I want to say, and how will I frame that discussion appropriately?”

I do not mean to sound inconsistent–on the one hand criticizing, on the other, lifting up, but a good starting place is with the “dont’s” list near the end of the Times article. There, topics are reframed more appropriately for discussion with a friend facing a difficult diagnosis. Here are the most common things said to me by visitors that I wish would go unspoken.

  • Statistics, statistics, statistics. Avoid them, unless either (a) I share them first and you are responding to my comments, or (b) you are aware specifically of clinical data relating to patient outcomes for a chosen treatment options I have discussed with you. I diverge some from my sisters and brothers in the patient/survivor community because many of us rally this battle cry, “I am not a statistic!” Sure, sure, but, honey, the stats are made of people like you and me; hence, to turn a blind eye towards stats is foolish if we seek to be well informed patients. I want to know the stats. Regardless, if X percent of diagnosed patients made it X months or years, even if you wish to encourage me, don’t mention these numbers to me. When patients say, “I am not a statistic,” what they mean is something like what I have said, before, I follow a strict, calorie restricted diet, I maintain my activity level, I take my medications at the directed dose and time, I avoid known carcinogens, I supplement with vitamins, herbal supplements, and essential oils. Even if said with encouragement, “Adam, I know you’ll be in such and such percent,” is to ignore the discipline, restriction, and intention I apply toward almost every aspect of my daily life.
  • Not to mention… Statistics, statistics, statistics, picking me out to be in the “good” statistics is to ignore the loss for folks who comprise the “bad” statistics, regardless of their anonymity for you and me.
  • “You look great!” “I am so happy you’re doing so well!” “It’s great you’re feeling well enough to get out of the house.” “Your color looks so good!” I hear this frequently. I understand these compliments are paid to me because, well, dammit if I don’t look pretty good most days of the week! I do get myself up, dressed, and ready for the day 9 days out of 10. My color is good. My cognition is pretty unaffected (most days), but the gap between good coloring and terminal diagnosis is a broad one. Just because I’m up out of bed, and I look good, and I’m not a frail bag of bones, your seeming surprise is not helpful. In fact, it conjures feelings of guilt that I am somehow not as sick as you thought me to be. Similar to my remarks about the statistics. To emphasize how good I look, and to do so with near-surprise, is to take away from the deliberate effort it took me that morning brush my teeth, put in my contacts, get some clothes on, and face the day.

Lesson: ensure comments reflect your knowledge of your friend or loved one and not only the patient population he represents.

 

The Next Difficult Conversation.

Here are the lessons I hope you carry into your next visit with friend or family member facing a difficult diagnosis.

  • Avoid stark contrast between the circumstance and your spoken words. “Hey, how are you?” is good for the locker room, not a hospital room. Take a few moments to rehearse your opening words before stepping through the doorframe.
  • Be vulnerable: surrender what you do not control, and embrace your autonomy. When visiting a loved one surrender your (mistaken) control over their mood, their diagnosis, the hospital setting, and take under your control your attitude, how you frame the dialogue, and how you engage with medical staff.
  • Frame your comments about the individual, not the disease or diagnosis your family or friend represents.