On Survivorship, from the Survivors

“Why does mommy have to work all the time?” Our three year old, Gideon, asked through broken sobs when I greeted him at his crib one recent morning.

“I’m sorry, buddy, we all miss her, don’t we,” I replied, my own eyes blurry and breath shortened, choking back tears of my own.

Later this same day, or the day after, rinsing dishes following breakfast I began sobbing.

“Are you sick, daddy?” Gideon asked.

“Yeah, bud, daddy is sick,” I say.

“Are you going to throw up?”

“No,” I chuckle.

Scenes like this play out frequently, swapping the subjects and settings, themes are similar.


Our family is slogging through a waste-deep sludge of survivorship, and like quick sand, we seem to sink more each day. The new experiences of active cancer care are behind us. The quick wins and short-lived milestones are long past. Setting our eyes to the horizon reveals more angst than anticipation.

We lug the bags of survivor’s guilt behind us, recognizing we have these moments together, moments that many families did not.

We lug the bags of insecurity, too, second guessing our decisions to work, to keep busy, to be productive, to send the kids off to daycare so that I may sit in an empty house to write in an effort to satisfy a life project–papers, books, or posts–at the cost to my family of lost wages and absent parenting.

Whitney experiences terrible guilt leaving the house each morning. I feel terrible guilt that she has to.


I sat across the coffee shop table from a close friend last week, a rare trip out of the house. I shared with him the idea I was trying to make sense of: when I search for meaning and purpose, in light of my predicament–uncertain life expectancy, a desire to live fully today, a desire to aid Whitney with financial stability, a desire to achieve future aims–I am motivated to say something helpful to others about what it is to grieve the loss of future possibilities that will likely never come to be.

“I’ve never thought about this before,” said my friend, “but now that you say it, it seems so obvious! You’re experiencing things we all experience in our lives, but your experience is more […] compressed.”

I nodded.

I’ve alerted myself to this insight also. Several months following my diagnosis, when I was wrestling with acceptance of a terrible disease and what it amounted to for my life and the life of my family I expressed something similar, “my life is like everyone else’s,” I said, “but the volume has been turned up.” I was trying to get at this notion that each of us gives some thought to our relationships, to goals and priorities, to what legacy we build, and to thinking of our own mortality. For me, these occasional considerations are amplified. Or, as my friend put it, “compressed.” They become daily, high-pressure considerations and decision points.

“A lot of people work through the decisions you’re making, and they take 20 or so years to do it.” This was the response from a friend, a palliative care physician, when I rattled off the horizon of possibilities for my future direction, possibilities that narrow more each day. “But of course, you don’t have 20 years, do you?”


I am a member of a loving brain tumor community including patients, care partners, loved ones, researchers, and clinicians. Struggling with survivorship, I set out to write this post–in fact, much of what you just finished reading was my first pass–in hopes it would meet others where they are, in their own struggles as a spouse, child, sibling, parent or guardian, also slogging through survivorship. Then I realized, we are a community, and if the sign posts I’ve been reading are correct to signal I speak in ways that amplify the experience of others, how might we all learn together from our shared yet unique experiences.

I posed the following question vis-a-vis Twitter (in the following quote, I spelled out the hashtag acronyms, with brackets):

Drafting a blog post today about #survivorship. What issues do you find most challenging to navigate after the dust settles from the shock of diagnosis? #btsm [brain tumor social media] #btsmqol [brain tumor social media quality of life] #ptexp [patient experience]”

The community responded with thoughtful, vulnerable, and honest replies. My mood immediately lightened as I experienced the embrace of a community that stands shoulder to shoulder with each other as we experience our disease from our unique perspectives. In the following paragraphs, I report on many of the replies I received to my prompt. As a note of caution, I quote responsibly, but I also present these replies thematically through the lens of my own worldview. As we say on Twitter, retweets are not endorsements, and opinions are mine only!

I consider it an important observation that an inability to work and provide for one’s family is one of the most noted difficulties when navigating a brain tumor diagnosis. I ask rhetorically what does it suggest about our culture that in the face of serious illness it is employment and income with which we find our selves concerned? In my life I’ve sacrificed time on personal projects in order to fit in working hours to earn income. This is a perennial issue for me. My good friend @JBHarp82 put things most bluntly. She replies, “Guilt:feeling like a burden on others at times when unable to do things ie: not working full time to contribute financially as before.” Another reply suggests the painful loss of productivity, “it’s disheartening that while I don’t feel less intelligent, I am much less productive” (@mcintose)

It seems addressing, defining, measuring, and evaluating value and productivity are possible gaps for people living in a period of survivorship. How might our goals of care better close this gap?

Our social life is impacted, and this theme shows up in many replies, “Dealing with family/friends who say, ‘you’ve changed'” writes @PatientAdvocac4. A more direct critique comes from @Lahla42928400, “…being careful about who I let in- too many assholes out there…” Before you find that remark too harsh, here it is in softer language, Again, @JBHarp, “Loneliness:everyone comes out of the woodwork offering support but once the initial shock wears off & surgery/initial treatments & restrictions are lifted, you don’t hear from anyone anymore it seems.”

Our friends play such a vital role in helping to process our experiences, and we need those friends to match our tenor. @Emi_Livingston gave voice to this concern, “dealing with people who are still in the ‘shock’ phase, and/or who focus on the negative when we want to embrace what’s normal and focus on moving forward actively.”

How might we better revise our cultural and social norms to encourage friends of those with serious illness to remain engaged through all stages of care, not only the most acute and interventional stages following disease onset and diagnosis?

The anxiety of survivorship comes up again and again: worries about the next MRI (@JBHarp82), “Waiting for shoe to drop recurrence (already thinking of next one and just beating this time,” wrote @RipsRant. With a reminder that patients are not only tuned to their disease, @inewsham offers this insight, “Hearing about others whose cancer has returned and trying to keep those fears at bay.” For example, the death of Senator John McCain rippled through the brain tumor community regardless of political, demographic, and socioeconomic lines, I do not only speak for myself when I say we collectively mourned for the Senator that day.

Another theme to emerge is the drive toward acceptance of the “new normal.” “You’re all brave amazing people,” cheers @ChloeDrew8. She continued, “The new ‘normal’/facing life so differently to before is not to be underestimated.” The tremendous resilience and effort toward acceptance is visceral in this comment from @NancyNHuang, “I’m 2 years out and can pass for normal, but have come to realize that I will never fully recover. That is hard.” Or imagine this experience reported by @Project2Program, “After two surgeries, double radiation treatments, clinical trials, multiple chemo treatments and recovery from adverse events our biggest challenge in terms of #QOL [quality of life] is fatigue.” Striking a chord with balancing factors, @Sabine_NJ writes, “now:parenting; balance between living life (traveling) and family life.”

How might our care teams come alongside the persons under their care to pursue aims in light of the “new normal”? What we call the new normal is this period many call survivorship, and the challenges exceed those I mentioned in this post, which were: value and productivity, social life, anxiety, and ultimately accepting a new phase of one’s life, one that is like everyone else’s, maybe, but amplified and compressed.

How might we all better learn from the experiences of the seriously ill?

I was not able to include all of the many replies to my prompt. I thank all who ‘liked’ and ‘retweeted’ the question. To follow all the incredible members of our community, please navigate to Twitter and search hashtag #BTSM

Visible Scars; Invisible Diseases

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

I feel guilty that I am not more sick.

That is a strange emotion, isn’t it?

I feel guilty that I am not more sick.

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

Yet, the sentiment remains.

I feel guilty that I am not more sick.

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

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


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

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

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


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

And for many, it is. 

But for me?

I do not look this way at all.


I feel guilty that I am not more sick.

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

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

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

I am guilty that I am not more sick.


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


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

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

I am guilty that I am not more sick.


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

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

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


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

I am guilty that I am not more sick.

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


I feel guilty that I am not more sick.


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

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

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

Finding Purpose between Power and Helplessness

I write this post a day after delivering a public talk, Inside My Head: A Story of My Personal Walk with Brain Cancer, and a day before my next eight-week MRI scan. In this post I report the strange emotional dichotomy, recognizing my power of positive impact through public speaking while suffering under the helplessness of the course of my disease.

“In two days I will be changing into hospital socks and oversized scrub pants. I consider the ongoing depersonalization of the American healthcare patient: name, date of birth, diagnosis c71.9, malignant neoplasm of brain, unspecified; one-size-fits-all standard of care, cinching tight the drawstrings on the waistband of my comically-too-big scrubs while I shuffle to the MRI bed.” I delivered these words Sunday afternoon, March 5, to a packed house of 250 or more friends, family, and colleagues gathered in support of me, my wife and young children, and to make a dent in median overall survival by raising money and awareness for brain cancer research.

It is the day after my talk. It is the day before my next eight-week MRI scan to monitor disease progression. This morning I suffered a minor “event” or “episode” or something. I lost my footing in the living room, grasping for a door frame to prop myself up. I tapped out two more emails on my iPhone when seeking respite on the couch following my “something.” I continue my “work”: seeking venues to deliver talks, spread awareness, and raise funds to support my young family after I am long past useful.

I returned home last night following an unmatched display of support from  my community. I hugged my older boys for bed. I rocked my youngest for sleep while participating in the monthly #BTSM chat. This month’s topic: survivor guilt. Other persons with with brain tumors, many living with the disease longer than I have, poured out the contents of their hearts in 140-character confessions, searching for purpose, meaning, and self-worth in contrast to the ever-lengthening list of old friends, now deceased. The longer you walk this road with others, the older friends are lost and new ones join in the march. What lessons live on from the last generation to lend to the newly diagnosed?


My youngest son received his 18-month check-up this morning. He is a dot on a curve representing a percentile. All lines trend up. At a point in all of our lives we reach an apex and become a downward trending dot.


My wife returns home with our little guy in tow She notices me hunched over my phone on the couch, seeking respite yet tapping away.

“You have to rest!”

There is no resting for me these days, only sleeping when tired.

“You have to take it easy.”

I tap on my phone to pitch my next talk, to schedule a meeting to contribute to a caregiver- and patient-facing website offering resources to people in the path of disease, to connect with the tweet-savvy to grow my network, to share my blog, to gain more followers, to carry out a mission beset by chemotherapy, fatigue, and nausea. To find self worth in my own personal quest toward a meaningful life.

“Sent from my iPhone” isn’t just a status, or business, or to indicate traveling correspondence, but to assert, “I may be nauseated, but I’m not dead”; “I am ‘working from home’ under a blanket, tapping away at the lessons to lend to the next generation.


It is the day after my talk, the day before my next scan. Name, date of birth, scrub pant size? The same system I criticize, I trust myself to its care. I cry over this journal today because I am afraid; terrified, really. Do not mistake my comfort and articulation when discussion my morbidity or mortality for hope that I may evade the advancing line. Acceptance does not ameliorate fear; it embraces fear. If one-size-fits-all standard of care depersonalizes the American healthcare patient, we must recapture our personhood. What is more personal; what is more human, than realizing our own mortality. “The path through fear is familiarity,” I spoke yesterday.

The day after my talk, the day before my scan. I am seeking purpose somewhere between the power of my influence and helplessness of disease progression. Between power and helplessness, a person’s place in the world, surviving.

Coming Together! Inside My Head: Public Talk on March 5, 2017

What Will I Talk About?

Glioblastoma is an aggressive brain cancer that affects mostly 50 and 60 year olds; though the disease is not restricted by age. High grade gliomas are present in all ages, from children to young adults, 30-somethings like me, and those decades older than I am. I started a journal the day that I went in for the MRI scan that revealed my primary brain tumor; I journaled the days before my craniotomy and tumor resection; I journaled in the days following my awake brain surgery. I recorded my thoughts the evening after receiving the diagnosis of glioblastoma multiforme (GBM), a killer that takes the majority of patient lives a year and half following diagnosis. I journaled my way through acute inpatient rehabilitation, and my journal is the basis of the blog I started after hospital discharge.

In this public talk on March 5, join me for an hour long immersion into my personal walk with brain cancer. I bring to light many of the anecdotes, emotions, lessons, and punch lines that so far have only existed inside my head.

Where Do I Find Event Details?

Many of you have responded with excitement for my first public talk I am sharing on Sunday, March 5, 2015, 3:30pm-4:30pm on the south side of Indianapolis. In this post I wanted to hit a few of the highlights that are coming together as we plan for the event. Following these quick-hits highlight is a high-level agenda describing how our afternoon together will be spent. Here is a link to the public Facebook event page. If you have not done so, click GOING if you can make it in person. That will help advertise the event, and aid our planners with room set up.


  • Interest has been immense, humbling, and exhilarating. I have friends from healthcare, academia, food service industry, personal friends, and the faith community showing interest. I cannot wait for us to rally together from so many different paths. Following my talk we will have light snacks and time to connect.
  • For my friends with young kids. Please join us. CHILDCARE IS OFFERED. Email your kiddo headcount with ages to event planner Lindsay by March 1 to help lock in the right number of sitters.
  • I know several of interested folks cannot attend in person. The event will be broadcast on Facebook Live from my personal page. Feel free to “follow” me on Facebook to see my posts and live broadcasts.
  • Following the event the video will be posted to this blog.
  • Donations will be accepted for my young family during the event, and a silent auction is arranged. Please arrive at 3:00pm if you would like to participate in the silent auction.
  • A portion of proceeds from the event will be donated to the American Brain Tumor Association (ABTA).

Working Agenda

The agenda is built around two main ideas: first, that we are a community of friends, patients, caregivers, and professionals, and we all have stories within us to learn from given the chance to share. Second, it is our relationships that sustain us through times, good and bad. The agenda reflects these ideas of story telling and connection.

  • 3:00pm, doors unlocked to check out silent auction items. Adam and Whitney will be hanging around to greet friends and chat before the talk is underway.
  • 3:30pm, Whitney, my best friend and wife, will applaud a few key people for their help. She will cover a few housekeeping items, and introduce me.
  • 3:35pm, I will take the stage and share my personal walk with brain cancer. The talk should last around 30-40 minutes.
  • 4:05pm, I will field Q&A from those gathered in attendance. I am a fun medical case because I have managed to endure this battle so far with little cognitive impairment. I have much to say, and I want to do my best to address your questions.
  • 4:20pm, silent auction winners are announced.
  • 4:30pm, light refreshments are available and Adam and Whitney hope to chat with folks one on one who can stick around.

Social Media

One of the most valuable communities to me has been the #BTSM (Brain Tumor Social Media) Twitter-based/online community. Despite our geographic and often demographic separation, our shoulder-to-shoulder battle to survive brain cancer connects us.

Instragram pictures, Facebook posts, and tweets are welcomed and encouraged from anyone attending the event or helping us with coverage. Please post using the hashtags #BTSM #GLIOBLASTOLOGY and #AandWTumorTakedown

Please reach out with any questions you have! I can’t wait to see you on March 5.



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.


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.


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.


[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.