Tumor Treating Fields and Me: One Patient’s Experience

Disclaimers, Disclosures, and Caveats: I am not a medical professional or otherwise trained in medicine, treatment, or medical equipment. I am an engaged patient who applies his academic skill set picked up in grad school (philosophy) toward researching the biology and treatment of his brain cancer. My discussion of cancer and tumor treating fields herein reflects my best efforts to digest academic literature and present to a general audience. Corrections and feedback are welcomed. -AH

1. Introduction

Sunday, February 12, 2017, 9pm EST, I will be available during a #BTSM Tweet Chat to field questions during an ask-me-anything (AMA)-style Q&A for patients using the Optune device, the commercial platform for Novucure’s Tumor Treating Fields (TTFields) technology for the treatment of newly diagnosed Glioblastoma Multiforme (GBM), a grade IV glioma.[1] In this post I provide a brief introduction to the Optune device and its mechanism of action–that is, how the thing works (section 2), its advantages over other available therapies for GBM (section 3), and the timeline of my experience with the device (section 4). I leave much of my personal experience aside for now to be covered during the chat. My hope is some in the #BTSM audience might find this post ahead of the #BTSM chat Sunday. This post is intended to be helpful for folks who have little information about Optune and TTFields  technology.

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To proceed with understanding the therapeutic efficacy of TTFields, it is helpful to know what we are up against. Cancer is a collection of many individual maladies that together fall under the taxonomy, cancer. Several illnesses associated with cancer are specific to cancer type, tissue of origin, stage, or grade, but a common feature of all cancers is the unchecked  growth (‘proliferation’) of cells. The reigning paradigm in medical and life sciences research to explain this unchecked proliferation is called somatic mutation theory (SMT) (Note: you may infer from my statement, “The reigning paradigm,” suggests other theories are advanced, and this is true. SMT is the dominant theory, and has been growing in evidential support and theoretical sophistication since at least the mid-1950’s, but alternative theories deserve discussion; though not in this post. For what it is worth, my recent academic work in the philosophy of science explores alternative theories of carcinogenesis.) SMT asserts that cancer results from the clonal expansion of a transformed, (‘mutated’) progenitor cell. What does that mean? On the dominant view, a single cell (the progenitor) is genetically damaged (is transformed). The offspring of the progenitor cell (the ‘clones’ in ‘clonal expansion’) carry this genetic damage. The damage occurs to genes that control how a cell grows and divides.[2] Damage to ‘oncogenes’ puts the cell in a state of rapid proliferation. Damage to tumor suppressor genes inhibits the cell from carrying out programmed cell death (‘apoptosis’), the cell’s natural checkpoint to guard against cancer. A helpful analogy appearing in the literature is that of a car: slamming on the accelerator (oncogene damage) while cutting the brake lines (tumor suppressor damage). The result is unchecked cell proliferation, cancer.

2. Optune, Tumor Treating Fields, and Mechanism for Action

Optune was approved in October, 2015 by the FDA for treating newly diagnosed GBM. GBM is the most aggressive form of brain cancer in adults, and it is associated with a very grim prognosis. Few patients live beyond one or two years after diagnosis.

It is also the type of brain cancer I have. Dammit.

As discussed in the previous section, cancer is a disease of cellular growth. Glioblastoma is the highest grade glioma named for the glial cells from which these tumors arise. Glia are 90% of the cells that comprise the brain. These cells support normal brain functioning by insulating, protecting, and facilitating signaling between neurons and other cells types of the central nervous system. Because glia are abundant in the brain, glioblastomas live, travel, and expand effortlessly through the tissue of the brain. This characteristic makes them especially resistant to treatment along with other therapeutic obstacles such as the difficult-to-penetrate blood-brain barrier.

The standard of care (SOC) therapy for GBM is the tried and true slash and burn approach: surgical resection and radiotherapy. My tumor was 71mm just prior to resection. That is roughly the diameter of a baseball. Sheesh! My talented surgeons successfully completed a ‘gross total resection’ of my tumor meaning greater than 90% of the tumor was removed. Unfortunately, GBM has tentacles that branch out from the primary mass. Number one tricky! These tentacles cannot be surgically removed without damage to surrounding healthy brain tissue, so rather than face permanent left-sided paralysis, surgeons and I made the decision to stop the procedure after removing roughly 95% of tumor. I was able to discuss this decision with surgeons during the procedure because I was consciously sedated for surgeons to functionally  map my sensory and motor cortex while resecting tumor. The resection was, on balance, a success, despite knowing that residual tumor remained.

Here Optune/TTFields debut just after surgery and a six-week daily chemo + radiation cycle: to help delay if not stop the division of GBM cells that make up these tentacles of residual tumor. Optune is started during the maintenance chemotherapy stage. I have discussed ‘maintenance’ Temodar/temozolomide (TMZ) chemotherapy in previous posts–this is the 5/28 cycle. High-dose TMZ is administered for the first five days of a 28 day cycle: one week on, three weeks off; one week on, three weeks off; a monthly cycle repeating for six to twelve months. During this time Optune demonstrates improvement in two important metrics: overall median patient survival (OS) and median progression free survival (PFS), meaning the median patient survival time without disease progression.

Here is the important sound byte from a Journal of the American Medical Association (JAMA) article: Median overall survival in the per-protocol population was 20.5 months in the TTFields plus temozolomide group (n = 196) and 15.6 months in the temozolomide alone group.” [4]

In plain speak these results demonstrate that among trial participants, those combining maintenance TMZ with Optune/TTFields display a median overall survival of 20.5 months. The population using only TMZ display a median overall survival of 15.6 months. The folks using Optune experienced a 5 month increase in median survival time. These are patient averages from a random sampling of the clinical trial population. Some folks did better, and some folks did worse.

*Aside*

Through the magic of Facebook I connected with a friend of a friend who was previously a complete stranger, whose husband was in the pivotal EF14 clinical trial which led to Optune’s approval. Incredibly what a small world it is that we should be connected through a social media mutual friends. Even more incredible is that this new friend lives in Arizona, where I grew up, and she is familiar with many of the places I am. Pretty cool, huh?

*End Aside*

This raises the question, how does Optune increase median survival time? How does it work to slow the growth of GBM? The device must be worn at least 18 hours each day to receive benefit. The patient’s scalp is shaved, cleaned with alcohol, and four ‘transducer arrays’–one set of arrays on the front, another on the back of the head, and one set of arrays on each side of the head, equaling four total arrays. The arrays are held to the shaved scalp with medical grade adhesive and are insulated with an electric-field conducive gel. An alternative field is generating front/back and right/left targeting the area of likely tumor recurrence–for most with GBM this target is a 2cm margin around the resection bed, or surgical cavity. Rapidly proliferating cells is the common feature of cancer, and cells proliferate by dividing in a process called mitosis. For mitosis to occur DNA in the nucleus of the cell is copied into an identical pair, then these things called microtubules line up outside the cell nucleus and start to pull at the nucleus, one strand of microtubules on each side, in a microscopic game of tug-of-war. The nucleus is pulled in two, one copy of DNA on each side, and the cell divides into two identical pairs. To get the microtubules in the proper structure the cell uses the natural electric potential in the tubules. The Optune/TTFields alternating electric fields disrupt the structural formation of the microtubules and the cell is either unable to divide, or divides aberrantly with lop-sided distribution of genetic material and so the cell enters a cycle of programmed death. The result is the delaying or complete inhibition of cancerous cell division.

A natural question is to wonder how the Optune is able to target only cancerous cells. TTFields target mitosis in dividing cells. Resting  cells are purportedly unaffected by the frequency and intensity of TTFields. Here is a nice video from Optune, which explains the process more helpfully than maybe I have in this post. (If MDs or PhDs join us Sunday I want to ask how it is that other dividing cells, even the slow ones like neurons, and other glia that may be facilitating neuronal activity are not affected?)

3. Advantages Over Standard Therapies

The advantage over other therapies amounts to the non-invasive and non-toxic characteristics of Optune over standard of care therapies. Chemo targets rapidly dividing cells in the body, and unfortunately for your typical cancer patient, we possess all sorts of rapidly dividing cells, like hair follicles and the lining of our stomachs. This is why cancer patients often experience hair loss, nausea, and other damage caused by the toxic nature of the therapeutic drugs. I often joke (because high grade brain cancer requires a sense of humor) that if the brain cancer doesn’t get me, the bone marrow cancer, a side effect of my chemo, will.

Moreover, in recurrent GBM–‘recurrent,’that is, a regrowth of tumor after standard of care has been completed, patients may not be well enough to tolerate additional surgeries or chemotherapy. Also, recurrence may not form a solid tumor mass but may be diffuse throughout the brain, preventing surgical options. Fields generated by Optune may impact cancerous cells in locations unable to be reached surgically or for patients unable to tolerate additional therapies.

4. My Personal Timeline

I have discussed my journey elsewhere in this blog; I will not say much more in this post, but I will render a rough sketch of my treatment timeline. After complaining of seizures and headaches for some time, and especially after failing a typical ‘neuro check’ with my primary care physician on May 13, 2016, I was ordered to receive a “stat” MRI. That MRI revealed my tumor, and I was in brain surgery less than two weeks later. The pathologist confirmed GBM following surgery. I underwent the standard chemo and radiotherapy and completed the six week daily radiation on August 9, 2016. My neuro-oncologist ordered Optune, and after taking some time to think it through, I agreed and was fitted in October, 2016. I diligently used the device for three months, but my compliance began to waiver around Christmas time. For the first couple of months of 2017 my Optune compliance has been poor. I met with my point of contact, equipment specialist from Novocure this week, and I expressed my sort of “I’m on the fence” attitude to him. Our #BTSM chat actually hits at a pivotal time in my continued use of Optune, and I hope to gain insights from others.

So that’s that. A quick intro to Optune, and even if you aren’t in the target patient population to use the device, maybe this post has provided you with enough information to “listen in” Sunday evening, 2/12/17, 9pm EST.

Notes

[1] Press Release. October 5, 2015. FDA approves expanded indication for medical device to treat a form of brain cancer. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm465744.htm

[2] What is Cancer? from National Cancer Institute (NCI), a division of the National Institutes of Health (NIH). https://www.cancer.gov/about-cancer/understanding/what-is-cancer

[3] The Cancer Genome Atlas Program Overview. https://cancergenome.nih.gov/abouttcga/overview

[4] Stupp, et al. 2015. “Maintenance Therapy With Tumor-Treating Fields Plus Temozolomide vs Temozolomide Alone for Glioblastoma.” JAMA.

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.

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.

 

 

Brief Lessons in Person-Centered Care: Please Do Not Place the Chair in the Center of the Room

You are reading one in a series of short posts translating the patient experience to an action-oriented context for clinicians.

My wheelchair was outfitted with a tray, which might be convenient if I were cruising the halls of the locked brain injury unit, snacking on Doritos I took away from lunch, sipping stale hospital coffee from a Styrofoam cup, with the red straw pinched on the end like the metal receiving mold of a stapler, greeting staff with a Cheshire grin—“should he be out of his room?” The tray, brittle plastic, sold to Boeing in the late-1970s to pop up from the arm rests. Ginger ale. Always ginger ale.

My tray was not for convenience, though, but for safety, my left-arm, limp with hemispatial neglect, a side-effect of a gross total resection, edema, and subdural fluid collection, which, for what it’s worth, is still there, in a pocket, inferior right parietal lobe, above the occipital lobe; though, my proprioceptive issues are greatly improved, no small thanks to the persistence, skill, and expertise of my therapy team, two OTs in particular, and my wife, who is, “his wife, not his therapist.”

The dead-fish left arm, kenesio-taped to the tray during early therapy sessions to keep it from getting caught up in the spokes of the wheelchair, had earned its independence. I was complicit in my in-room exercises, and for a reward, earned the activity of navigating my wheelchair without supervision around my room, to and from lunch, and down the hallway to my favorite reading spot, a large window at the end of the fourth floor, overlooking the main drive, a quarter mile or so, lined with trees, where I would read three Einstein papers during my stay. The staff likely is still not sure if I was actually reading Einstein, or, you know, “reading” Einstein.

The neuropsychologist entered around 6:30pm, June 6, 2016—so says my journal, my reliable eyewitness to those few weeks. (A week and a half out from surgery.)

He pulled a chair to the center of the room.

Sat.

“You’ve been through a lot. How are you doing?”

“I’m really doing well, all things considered! I’m enjoying the schedule here, and I really appreciate the opportunity to rehab my motor and sensory deficits.”

This is my stock answer. I explain that I am expecting the pathology report soon to hear about the type of cancer that grew itself into a baseball-sized tumor in my right parietal lobe. “It will be good to know what we’re up against.”

I am still unsure if the pathology report was available in my records at that time, which the neuropsychologist would have, and probably should have, read, prior to his stop-and-chat, and it is not implausible to think everyone else had read it but was waiting for my neuro-oncologist to break the news. (Which would happen four days later on June 10, 2016.) Or maybe the neuropsychologist never read it. It is also possible that the pathology report was not yet available.

At any rate, my response, “…really waiting on that path report … can’t wait to hear what we’re up against,” is reason enough to suspect that this patient is unaware of his diagnosis.

“You appear to have a positive outlook. Do you feel anxious?”

[I’m in a locked brain trauma unit, separated from my family, less than two weeks out from major brain surgery, unsure of the type of brain cancer I have.]

“No, not anymore than what I would guess is to be expected. I actually feel pretty good, and I think having the mass resected from my brain has improved my overall health.”

[This much is accurate. My right ventricle was squashed into a pancake and the mass had occupied all available space in my parietal lobe, pinching the optic nerve bundle on its way back to the occipital lobe. I was having daily seizures, and episodic paralysis on my left side. Each of these symptoms improved after resection. I really was feeling pretty good post-op. Good enough to read Einstein, anyway.]

“Have you heard about the exciting new research for treating glioblastoma?” the neuropsychologist asks. He begins his ode to the polio vaccine: a soliloquy to research and the promise of a cure for glioblastoma. It is a grand love song to the miracles of modern medicine in which I tacitly feature as a supporting character.

In fact, this continues to be—the polio vaccine, I mean, a common response to people hearing about my diagnosis.

“Have you heard about this the polio vaccine!?”

It’s not just for New Deal Presidents, anymore.

This compulsion to share uplifting news grows from fascination and wonder with great respect and discomfort for our own mortality, “What if this were my diagnosis?” Our mortality is curious. It raises the Cartesian punch line that maybe I am strictly a thinking thing, and if that is the case, is that thinking separate from my body, or is it emergent from my physical processes? The churning, whirring, buzzing of a busy brain, and in the absence of these processes, so goes the thinking, and frighteningly enough, so goes me?

I think; therefore, I am.

I am not.

Therefore, I am not thinking.

The neuropsychologist continues.

“Mhmm,” I nod along.

“Have you watched the 60 Minutes Episode?”

“No, unfortunately I haven’t had the chance.”

“Maybe it was on Dateline. It’s really cutting edge.”

I rally from somewhere deep, “Oh! Thanks so much for sharing the information!”

Let us not give ourselves over to cynicism, it fails to be productive, but neither should we fail to learn lessons when available. My talented and bright sister-in-law would call this a #teachablemoment. I advocate a person-centered approach to healthcare, and I gather many of you do, too, if only implicitly. What I mean is this: there is a time in medicine’s recent past that, owing to any number of factors, the piss-poor antiseptic practices, the intimidation of meddling with one’s personal constitution, the inaccessibility of information, or maybe the poor track record of doctors was still appreciably better than at-home treatment, a patient would visit a doctor when sick, take his advice—certainly a “he” in these cases, and bite the bullet, drink the booze, what doc says, goes. If you’re not that sick, you don’t need the doctor, anyway, and if you’ve called for the doc, I suspect his advice ought to be followed.

The doctor-patient relationship I mean to evoke in this instance brings to mind fond cultural memories of our Little House on the Prairie obsession with frontier America, unbridled horses, one-room schoolhouses, and whatever else they packed into Back to the Future III. The doctor was an authority. An expert. An altruistic one at that, and so, what reason would we have not to take doc’s prescription to heart?

The following is my thesis. Our doctors do their best work when their patients are active, involved, engaged, participatory, willing, and honest. A person-centered (or “patient-centered,” if you like, but that sees the person as patient first, like the difference between “a colored person” or a “person of color,” yes?), anyway, a person-centered approach to healthcare places a responsibility on the person seeking treatment to view their self as an advocate, as vitally important to healing, as a part of their medical team. Doctors who are committed to person-centered healthcare inspire and recognize these qualities in the persons under their care.

Consider these mistakes committed by the doctor who visited me that evening: my diagnosis was unknown to me at the time of our meeting. Was I told my diagnosis during that conversation? I cannot answer that question.

The polio vaccine is administered for treatment of GBM under certain conditions to patients who meet strict qualification guidelines for acceptance into a specific research trial. Was application to that research trial recommended to me during that conversation? I cannot answer that question.

Dateline is not cutting edge; a recent peer-reviewed journal article in a field of specialty is. Was I provided with the resources to learn more about this new treatment option during that conversation? I was not.

Doctor exits.

I scribble away in my notebook. I breathe deeply. I position my tired left arm, using my able right arm, onto the wheel, and push myself to the wardrobe in my small hospital room to begin changing for bed. The path is obstructed. Doctor has left his chair in the center of the room.

Each of these transactions during this experience—the diagnosis, the clinical research, moving the chair, I was not empowered to take an active role in my own care; it was about doctor as authority, doctor as expert, and that is why this experience, despite all my rattled, broken, and fatigued body has been through these few months, stands out as one of the most negative. Power was withheld from me that evening.

Soon, or in some time, we will visit a sick friend; maybe a dying friend, and this will be an opportunity to empower or to hold on to power. I ask that we embrace the former and recognize when we are stubbornly adhering to the latter for our own insecurities, fears, or discomfort.

Keep learning. Keep fighting.

Cheers- AH

6-6-2016_neuropsych_chair

Personal Journal: June 6, 2016

What is GBM, Anyway? Part II.

In Part I of this post we followed my journey toward GBM diagnosis, I briefly discussed Standard of Care (SOC), and I teased the post you are presently reading by connecting the etymology of glioblastoma to the Greek “glia,” meaning “glue” to indicate the affected cell types for malignant glioma–namely, non-neuronal brain cells such as oligodendrocytes and astrocytes. These glia comprise 90% of the brain. Together, the neurons and glia are denoted by the word parenchyma– gold-star word alert, meaning the functional bulk of tissue rather than structural or connective tissue.

It is clear that together we are wading into waters ankle-deep with medical terminology, but I hope you’ll stay with me. On the other side we will have learned something about our brains and bodies.

Understanding glia contributes to our evolving understanding of GBM. At least one ideal outcome to better understanding GBM is that we may better understand how to effectively fight, and ultimately, to cure, the disease. Of course many of you are reading along because you support me, and are interested in my fight, and I value your support. Part of being a good partner with you, is that I restrain from offering hyper-technical descriptions of cancer and associated treatment. I am not a medical professional, and I am not here to provide an alternative to Wikipedia, which would be both superfluous and not nearly as comprehensive. At any rate, I plan to stick to the narrative, for the most part. I’ll introduce technical knowledge into the discussion when I think it is warranted by its significance to understand the journey we are walking. Firming up our grasp on glia is one of these moments.

Glia play an important role in protecting, insulating, and facilitating neuronal connections, but that sells our glia short. Astrocytes play a central role in creativity and imagination. More striking, Albert Einstein’s brain, rather anatomically unremarkable in many respects, displays a higher concentration of astrocytes, densely populated in the areas of the brain involved in spatial reasoning and mathematics. Do we have astrocytes to thank for the upheaval of the Newton’s classical mechanics and ushering in of the age of relativity?

Oligodendrocytes, also glia cells, insulate axons to protect nerve fibers which carry electrical impulses away from the neuronal body and communicate with other axons or muscle fibers at connection points called synapses. So much to learn about these fascinating cells that play an important role in our thinking, perceiving, abstracting, moving, and feeling our way through the world. For each of these glia types discussed there is the risk of cancer: astrocytoma, oligodendroglioma, glioblastoma, and so on. These cancer types are graded according to World Health Organization (WHO) criteria, with a higher grade indicating cells exhibiting more rapid growth and greater divergence from normal cells. Glioblastoma multiforme (GBM) is a grade IV glioma/astrocytoma.

Let’s assemble our puzzle.

The brain is 90% glial cells. In a grade IV glioma, the resistance to therapeutic intervention is the following. Mutated cells easily track through the white matter of the brain, surrounding neurons, and invading vital brain functions. GBM, through cell division, branches, spreads fingers of abnormal cell growth (“Abby someone. Abby Normal. I’m almost certain that was the name.“) A malignant glioma can never be 100% resected because these branches, or fingers, even if visible on an MRI scan, are so invaded into healthy brain, a complete resection would sacrifice vital functions. The multiforme of “Glioblastoma Multiforme” indicates gross malformation of tissues, topographically, in other words, the structures of the central nervous system (CNS), microscopic malformation at the cellular level, as just discussed, and genetic malformation resulting in aberrations in the  signal pathways that trigger cell division of mutated glia. These signal pathways, involving molecular signals, which latch onto receptors in cells to initiate activities such as metabolism and mitosis, likely deserves its own discussion–let’s table that for now.

GBM, perhaps unhelpfully, but at least sardonically (#smh #cancersucks) is called “the terminator” just for these reasons: its pervasiveness, its resistance to therapeutic intervention, its unknown origins, and so forth. Consider the new treatment options showing success at our best cancer institutes: Optune, an electric-field emitting “cap” or “hat” that a patient wears at least 18 hours each day, alternates an electric field, pervading the brain, thousands of times each second. The electric field interferes with cellular mitosis (division). When glia attempt division, the electric field prevents proper alignment of the involved protein-chains and results in cell death. Optune is shown to delay tumor growth and extend overall survival rates when used instead of chemotherapy alone. This is the recent medical intervention I have employed in treatment of my own GBM.

CONCLUSION: We set out to answer, What is GBM? Along the way we learned that GBM is an aggressive cancer affecting parenchymal cells of the brain responsible for creative thinking, reasoning, nerve fiber protection, and other neuronal-supportive tasks. These cells comprise the bulk of brain tissue; hence, GBM spreads easily to surround neurons and vital brain structures. Innovative new treatments focus on disrupting cell division.

Keep learning. Keep fighting.

Cheers- AH

Glioblast-OMG: What is GBM, Anyway? Part I.

In Part I, I’ll share with you the journey that led to my GBM diagnosis (dx). In Part II I will share more information about what GBM actually is.

When an MRI scan revealed a 71mm primary brain tumor on May 13, 2016 (more background on the About page), my PCP called Whitney and me into her office. Together, we read the radiology report. You know the expression, it’s all Greek to me? Well it was, but for those who know me, you know that I’m a head-first, dive-in, full-commit student of topics that pique my interest. A baseball-sized tumor in my brain was an interest-piqueing phenomenon. At this early stage, though–that is, on 5/13/16, armed only with the radiology report, the pathology still a mystery, my appetite for knowledge would have to wait for more substantive medical information. That next piece of the portrait was painted by my talented neurosurgeons, affiliated with IU Health and Goodman Campbell Brain and Spine. Drs. Troy Payner and Aaron Cohen-Gadol. Drs. Payner and Cohen, with the assistance of resident Dr. Bracha, and an incredible anesthesiologist and OR team performed an awake craniotomy and surgical resection on May 26, 2016 (two weeks out from MRI).

Likely there is medical nuance I neglect, but I’ll use the following terms somewhat interchangeably: resection, craniotomy (cranio), or debulking surgery–surgery with the intent to resect/remove the maximum amount of tumor, while protecting the maximum amount of healthy brain tissue. A cranio is the first step in standard of care (SOC–remember that acronym, I’ll use it frequently) for treating primary brain tumors. The cranio was performed while the patient was awake–oh, the patient, that’s me! Dr. Payner’s decision, with the support of his colleagues, to perform the procedure while I was kept awake was to functionally map eloquent cortex functions (sensory and motor), while resecting tumor. The goal of this procedure is to aggressively remove tumor and leave the patient’s quality of life in-tact, to the extent it is possible.

*Aside.*

I went to grad school for philosophy, and I cannot tell you how excited my friends and faculty were to hear that a fellow philosopher would undergo awake brain surgery. I can finally put to bed the question whether we are living in the Matrix! On that cliffhanger, let’s save the awake brain surgery story for a future post.

Before retiring this brief aside concerning surgery, I will say, and I say it every chance I get, my neurosurgeons are absolutely gifted, and I am in their debt for balancing aggressive tumor removal, with protection of my sensory and motor function. Drs. Payner and Cohen successfully performed a gross total resection (GTR–another acronym), meaning >90% tumor resection. Patient outcomes–overall survival (OS), is greatly improved by a GTR vs. partial resection. My surgeons’ skills have added time to my life, more time with my wife, more time with my kids. Thank you to my entire medical team.

Seriously. More on the cranio in future posts. I can’t wait to tell you about being awake for my own brain surgery.

*Back to the narrative.*

OK! The resection gave my medical team tumor tissue to perform the biopsy and generate the pathology report. (We opted not to biopsy the tumor pre-op because the damned thing was so big, it was coming out, no matter what it turned out to be.)

Post-op I was inpatient at the operating hospital for some time prior to moving to an acute rehab facility, where I continued to be inpatient, working with a neuro-specific physiatrist and OT/PT team to recover lost function resulting from brain injuries caused during surgery–even successful surgery requires rehab and recovery. It is of note that my acute rehab facility included my residency in a locked brain injury unit. (More fodder for future posts.) On June 10, 2016 (four weeks out from MRI; two weeks out from surgery), Whitney and I caught a wheelchair-accessible ride to the IU Neuroscience building in downtown Indianapolis to hear the official diagnosis.

Tough diagnosis.

Glioblastoma multiforme (GBM): the most common and aggressive form of primary brain tumor. The cause of GBM is unknown. GBM develops either from a lower grade astrocytoma or as a mutation from healthy brain tissue. Tease, tease, tease, I must say that mutating cells reflects the current dogmatic view in cancer research that cancer is a genetic mutation. Research dating to at least the 1920s suggests that rather than genetic, a metabolic origin may be at work in the development of some forms of cancer. I hope you’re as excited to read the posts I’ll have on this topic, as I am to share them with you. My post-dx transition to a calorie restricted ketogenic diet is a lifestyle change I have embraced to take an active role in my own treatment. Nutritional supplements or diet changes are not SOC, they are not FDA approved, and if you ask the medical community, research does not support the efficacy of such metabolic or nutritional resolutions for cancer. That said, clinical trials are underway. This topic (therapeutic ketosis) will be a feature of my blog. Plenty more to come.

I must say unequivocally, loud and clear, please hear me: I am not a trained medical professional. I am a smart guy, who reads, who wants to live as long as possible, and I view myself as active in my own self-care and treatment. I trust my doctors. I have followed and will continue to follow SOC. I am wearing the Optune device. Big pharma is not out to hide the cure to cancer. My disagreements with SOC, where they appear to be disagreements, at any rate, are avenues of research for me because I want to beat the statistics. Please know that the blog you are reading is my first step toward documenting my battle with GBM. Let those things that work and those things that fail play out here so that when my case study is written there is primary source material available.

Recall I said the radiology report was all Greek to me. So was the pathology report. But here the Greek can help us. Glioblastoma, from the greek glial, effects the “glue” of the brain–non-neuronal cells. This is what makes GBM so hard to fight, it moves about the cabin of the brain, with no regard for the fasten seatbelt sign. Hey, GBM, you’re in my seat, causing edema, seizures, possible personality changes, unconsciousness, and other such problematic symptoms. By the numbers patients see 12-15 months of survival post-dx. Approximately 3-5% of the diagnosed population is with us 5 years out from dx. These are statistics, folks, and just because 3 out of 5 dentists recommend Crest, Colgate is still doing fine. (God, I hope Colgate didn’t just go out of business.)

This is where I will leave things for now. In Part II, I will say more about glial cells–astrocytes, oligodendrocytes, and share how my neuro-oncologist (NO) thinks my GBM developed.

I would love to hear what questions, thoughts, ideas, or topics you’d like to hear more about. Tweet me, comment here, or drop an email.

Keep learning. Keep fighting.

Cheers- AH