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…
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.
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.
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.
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.
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. 😉
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.
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.
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.
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!
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.
“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.
“C – A – N – C – E – R” my wife often spells the word when our kids are around. The idea maybe is that to name something is to give it power.
Beetlejuice. Beetlejuice. Beetlejuice.
Or maybe she hopes to avoid the inevitable question, “What’s cancer, mommy?” Worse yet, Isaac may tell friends, “daddy has cancer,” and no telling where that conversation leads in a school classroom full of five year olds.
Lessons for Kids and The Rest of Us, Too
Whitney and I do our best to communicate with the kids openly, honestly, and with integrity. Whitney and I have been up front with our kids that “daddy has a boo boo on his brain that the doctors are trying to fix.” Isaac and the younger boys visited me in the hospital and later in the acute inpatient rehab facility following my surgery. Cancer aside, the double-digit number of staples in my head was frightening enough–especially for toddlers who aren’t conceptualizing the silent killer of malignant cell proliferation. In a flash of parental clarity, I reminded Isaac of his many scrapes and bruises suffered to his knees and elbows following rambunctious play or tripping on the sidewalk.
I asked Issac, “Did it bleed?”
“Are the scrapes there now?”
“Did the scabs heal?”
The boo boo on daddy’s head is healing, too.”
Isaac visited me again a week or so later and he showed me his knee, bruise-, scratch-, scrape-, and scab-free. Lightbulb. The kid gets it. I showed him my staples.
What lessons does a parent take away from this brief interaction with his son? What lessons are available for the rest of us? I think it is the following: I managed to normalize a scary and intimidating situation for Isaac. Isaac understood, in that moment, anyway, that pain, injury, and healing are familiar experiences, something he can recall, and those experiences are shared by others, too. Dad looks scary, he is in a strange place, he has a visible injury, but even if the place is unfamiliar, the experience in broad view is normal: scrapes, cuts, bruises, bangs, dings, bumps, and band aids. Let the healing occur.
“Look at my knee, daddy! It’s all better.”
Empathy and Normalization
Our empathy is hard-wired from our great ape ancestors: in a very real sense we feel the pain of others, and our ability to contextualize, to see ourselves in the situation of another, represents an evolutionary advantage in so far as cooperation, problem solving, and social development rest on a foundation of finding threads that connect our experiences to the experiences of another, even if we have not faced their specific challenges. We think of ourselves as good spouses, good friends, good legislators, good faith leaders, good mentors, Big Sisters and Big Brothers, Rabbis, and Imams, Doctors and Nurses, because we imagine ourselves into the circumstances of our community, our cities, our classrooms, congregations, and hospital beds. Patient-centered doctors facilitate a role-reversal: they empower patients to take an active role in their treatment and recovery by answering the big question when prescribing medicine or writing orders: why? When patients view themselves as members of their medical team, these empowered patients contextualize their experience in following a treatment regimen to the doctor’s experience in prescribing one. The doctor and the patient are both sharing in the message of why a therapy is important. I call on doctors to explain to patients why a treatment strategy or plan of care is important in such a way that the patient is empowered to explain the same information to her family or friends. A doctor’s one-on-one communication with a patient is equipping the patient to have the same conversation with her loved ones. It is not one-on-one, but doctor-to-patient communication is one-to-many. How might a doctor’s communication with a patient change if she realizes the conversation is not only to inform the patient but equip the patient to inform others?
Good doctors and empowered patients walk (or roll, scoot, transfer, gait belt, etc.) together. It is a partnership.
My scalp itches and burns. It’s my electric cancer hat.
To maximize therapeutic efficacy, patients are instructed to meet a ‘compliance’ threshold for wearing the device. Compliance is a recommended 18 hours of daily use, but my oncologist (and clinical data) suggests that longer duration of daily use translates to increased therapeutic efficacy. The system includes an adapter for wall-outlet power and a 2 1/2 pound backpack (when loaded with the device and a battery) for getting around or out of the house.
The device is wired to a medical-grade adhesive holding multiple series of ‘transducer arrays’ that emit alternating electric fields, targeting a solid mass tumor. The electric fields disrupt the process of cellular division (mitosis). Maintenance requires patients change the arrays every two to three days, depending on a number of variables. Optune is FDA-approved for glioblastoma, so I presuppose this application in the remainder of this post, but TTFields are currently in clinical trial for brain metastasis (#bcmets) and mesothelioma. I change my arrays more often because, no secret to many of you, my super power is growing hair. The arrays must be in contact with a shaved scalp, and hair growth can interfere with array-to-scalp contact, causing hot spots, and disrupting therapy. When I stretch the arrays out to three days without a change, my rapidly growing hair causes the arrays to lose contact with a freshly-shaved scalp, and the device ‘alarms’ (*beep beep beep*)–not great for uninterrupted sleep. So it’s every other day for me that I remove the adhesive and arrays, treat my irritated scalp with shea butter, hang out, feeling liberated for a couple of hours, then shower, scrub my scalp, shave, and Whitney applies a new set of arrays. This is our routine. It has been more difficult for me to adjust to than I imagined it would be. It may not be too hard to understand why.
I nearly abandoned the Optune effort, but what I have failed to recognize until just a day or so ago is that I have not answered for myself why it is important I follow through with this therapy. There are at least three reasons, the first of which is obvious, and the latter two are consistent with the themes of this blog.
First, clinical trial suggests newly diagnosed glioblastoma patients experience an increase in overall survival with Optune compared to standard of care (SOC) alone.
Second, I am a pioneer in a new treatment modality. Yes, Optune is FDA approved and is frequently becoming another SOC protocol in the treatment of GBM (resection + radiotherapy + chemo + Optune), but we are early in discovering the wide ranging applicability of TTFields in the treatment of solid mass tumors. It is exciting to consider myself a partner in this new frontier for treatment.
Third, as a novel therapy, it is patient responsibility to help push cultural norms to improve the experience for future patients. Normalizing the wearing of Optune allows me to confront uncomfortable or strange interactions in public so that the next GBM patient may walk through the restaurant, car dealership, kids’ preschool, or grocery store without feeling the weight of quite so many eyes.
Like Isaac’s skinned knee, the staples that were in my head, and now Optune, I am wearing my cancer. It is easy to hide behind the visuals that project our pain to the world, yet we all realize, don’t we, that these are superficial and cosmetic; the tips of the icebergs. We, each of us, carry pain, heartbreak, embarrassment, fears, and injury, just below the surface, not in the light of day, exposed for the wandering eyes and strange looks from others. I think ultimately I wear Optune because I am coming to understand the act of wearing the device expresses solidarity with all of us facing hot heads, heavy bags, and restricted movements: our jobs, our relationships, our budgets, our health. It’s tough out there, friends.
I become irritable, itchy, hot-tempered, and worn out. I get short with the kids. But I also get this strange pass, right? Because of the Big C. Because of C – A – N -C – E – R. Because of Optune,and my affected gait, and my cane.
Many of you have thanked me for writing this blog, and you have said wonderful things about me and my experience: that I am inspiring, uplifting, strong, positive, and courageous. Friends, you are these things. I have been branded with the global identifier of cancer. I get head tilts and sad eyes. People are soft on me by default. The model I am living up to is the one set by all of you, who face an often mean world, and you do it with enough grace and kindness that at the end of your long days you have enough energy left to send my family a card.
We imagine ourselves into each other’s context, and we find empathy, strength, and partnership in that shared space. The analogies I draw from my experience and the lessons I galvanize show up in meaningful ways: this blog, like my description of doctor-patient communication, is not one-on-one, but one-to-many. I seek opportunities to tell my story, and I could not be more thankful for your support. More to come!