Friday, September 15, 2017

Death & Bereavement In The Digital Age - A Panel Discussion At Stanford #MedX 2017

It's panel eve at Stanford Medicine X 2017.

Over the years, I've convened a few panels here, been a guest on many of them and spoken on the main stage. I've had many a powerfully moving informal conversation in the halls of Li Ka Shing Learning and Knowledge Center, and by the pool of the Palo Alto Sheraton (MedX's ad-hoc after-hours party).

With tomorrow's panel however, I jump straight into the deep end, and come full circle with one of the defining events of my childhood: the untimely death by suicide of my father when I was 4 years old in a family and a society that had perfected the "just get over it and move on" solution to grief and loss. After losing more people than I can count, I have had to unlearn everything that was drilled into me about Loss and figure out how to grapple and play with it in unfamiliar and ultimately much healthier ways. Social media and in particular, my experiences as a member of the #BCSM community on Twitter have been instrumental in helping me on this path.

Envisioning the panel and then working with Alexis Roberts Keiner, Liz Salmi, Michael Fratkin and Jim Rosenberg (who, sadly will not be at Stanford with us tomorrow) to shape it has already taken me on a spelunking expedition to the depths of my soul. Our collaboration sessions lit up those cavernous walls to reveal the most asphyxiating of pain juxtaposed with the most immense beauty. Our shared gallows humor, tears and tenderness got all of us through our preparatory sessions, and I am so proud and thrilled to see our work come alive and share it with the world tomorrow.

Thank you Alexis for being the catalyst, thank you Liz for being the connector, thank you Michael for being the accelerator, and thank you Jim for being the aggregator.

Here is the abstract:

Death And Bereavement In The Digital Age

In 2016, people from around the world flocked to social media to mourn beloved celebrities, including David Bowie, Muhammad Ali, and Prince.

Meanwhile, for years and on a more intimate scale, individuals have been using (and continue to use) digital tools in creative ways as they experience serious illnesses, the end of life, loss, and bereavement:

-A baby dies suddenly and a mother informs her community on Facebook. In-person and online gathering, mourning, and healing ensue.

-A woman with advanced cancer tweets her illness and decline. Critics in national newspapers blast her actions, but her followers credit her with helping them.

-Cancer advocates die, and people who had only ever known them through Twitter gather online to mourn, celebrate their lives and … heal… and, manage their own heightened fears of dying and death—common emotions that accompany a cancer diagnosis.

-In the face of increasingly corporatized health care, a palliative care physician quits his job to better serve his rural community… he develops a way to help his patients, his colleagues, and himself more humanely tackle end of life issues through a combination of in-person and online video interactions/telemedicine...

-In the span of four months, a husband/father grapples with the progression from his wife’s sudden terminal diagnosis to her death. In the aftermath he develops a way—through a digital storytelling platform—to break down the taboos in talking about end of life and help people address the isolation, confusion, and stress that is such a painful part of the experience.

In this panel discussion, Liza Bernstein, Liz Salmi, Michael Fratkin M.D., Jim Rosenberg, and Alexis Keiner will explore the ways in which patients, caregivers, health care professionals, and anyone affected by loss are using and designing digital tools to address death and bereavement.

After each panel member introduces themselves and their personal connections to the topic, the conversation will focus on the impacts of our increasingly connected, digital lives on facing death, end of life and grief.

Questions we will address include:

-How has the digital age impacted death, dying and bereavement?
-What does the ubiquity of social media and digital tools add or subtract?
-How do online communities manage loss—and is it any different from managing loss “in real life” (IRL)?
-Are screens a way to distance ourselves from the realities of death, or can they help us cope? For example, by providing new ways to demystify and attenuate fears; to grieve, commemorate and commune; to create legacy and heal.

This carefully curated panel will bring humanity, dignity, kindness, and a healthy sense of humor to this sensitive but important topic.

Tuesday, May 30, 2017

Some Thoughts On War Metaphors And Cancer

This post is in response to a question proffered by Liz Szabo in a private discussion group. Liz asked:
Everyone seems to hate the use of war metaphors to talk about cancer. Which terms should replace "fighting cancer," "the war on cancer," or "lost the battle with cancer?"

War Metaphors Worked For Me...

War metaphors were the one and only thing that sustained me when I used them to get through the hell of cancer three separate times. 

At age 29 — my first diagnosis — the only way to make it through my terror at each and every session of chemotherapy and radiation was to literally grit my teeth and all but spit out my silent, continuous loop war cry: 

"Kill Those Cells (But Don't Kill Me), Kill Those Cells (But Don't Kill Me), Kill Those Cells (But Don't Kill Me)." 

Photo credit: Henry Hustava

In response to this memory, my arms, legs, stomach muscles, chest, throat, cheekbones, toes, fingernails, and what feels like every cell in my body have just fused into a wall of fury.

I need a moment to remind myself to breathe. 

In the past few years, thanks to my involvement in advocacy which has connected me with people far wiser than myself, I have come to seriously question my use of fighting terminology in light of the larger social/cultural/historical context, viz, the "war on cancer" etc.

On the one hand, all my questioning led me back to the certainty of who I am as a person, what my nature is. 

It is and always has been that of a fighter. 

Long before I ever was diagnosed with cancer, I was fighting back against many devastating life circumstances, from my earliest childhood. So, to a certain degree, that battle language works for me. 

... Until They Didn't (But They Still Kinda Did)

On the other hand, unfortunately, there is no place in the war mindset for the concept of healing. This, along with what is fashionable to call "toxic masculinity," reinforces the stigma, shame, and what at times seems like deliberate ignorance around PTSI (I am exploring the feel of the term Post Traumatic Stress INJURY vs Disorder), a common casualty of any kind of "war." 

War inflicts trauma. Trauma, especially when left untreated, often inflicts post traumatic stress injury.

War metaphors helped me claw through diagnosis and treatment, but they did not help me heal.

War On Cancer

I get the Why for the term "war on cancer." It's short, forceful, and was useful at the time to rally people and funding. Did it work as well as hoped? Well, we're not quite there yet, are we? 

Like all things political, it is a big catchphrase that has very little to do with the nuances and intricacies of reality. (I learned a lot about the context of the inception of that term from reading Siddhartha Mukherjee's Emperor Of All Maladies.) 

Interesting quote from Hutch News article: "Nixon's War On Cancer: Why It Mattered"

Cancer is not one thing. It is an almost infinite multiplicity of things, and that is part of the problem. To this day, a vast majority of people still think that there is this one thing called cancer and there is or there is going to be a cure for "it."

So often, when we declare a war on a thing, we come from a position of arrogance. That position is certainly helpful in mustering support for the endeavor, but it can have a fatal flaw. The flaw of disrespecting and underestimating the enemy. The flaw of laziness. 

Maybe we have not yet won this war on cancer because too much time and attention are spent on hype rather than on the reality of the magnificent complexity of this lethal disease.


Alongside that, I have also come to understand that I am and always have been (from earliest childhood) an expert at survival — it goes hand in hand with my fighter nature. I do not sit well, however, thinking of myself as a "cancer survivor." As I have said many times, I am still trying to survive survival

Survival does not do justice to the reality of what happens when cancer treatment ends (IF it ends: I share the anger and frustration about the fact that "survivor" completely excludes, erases, and ignores people with metastatic disease). 

If you are a breast cancer early stager, you will never know if your cancer will recur. So you are not cured. Have you really survived?

According to Merriam Webster, maybe you have:

Yes, we remain alive, we live on, we continue to function (But prosper? Maybe not so much....). This is not good enough for me. Is this — "Woohoo! I continue to function!" — what we celebrate?

If you are surviving, what is your quality of life? 

If the goal is *just* to survive — and it seems like it is, given, at the very least, in breast cancer culture, the nauseating shero worship afforded to "survivors" — then, if you have "survived," you get to shout "yay!" You are done and you go home with your pink pharma-logo'd backpack full of useless pink clutter.


"What's The Good Cancer?"

Recently, a highly intelligent, well-meaning, and dead-serious person who knows my life asked me: "What's the good cancer?" 

Eyes bulging, brow flexed, I stared back, speechless. 

Then I managed a: "Wait, what???" 

The person elaborated: "You know, what are the good cancers? The ones that people are cured of. The ones with the highest odds of survival?"

That question, right there sums up the damage inflicted on all of us by the glib use of misleading terminology and the attending glorification of the myth of survival.

Part of my reply included snark that escaped my self-control: "Ummm, so, like, I have "survived" cancer three times, and you know my life. Do you think that I had the good cancer? Yes, I am alive. But what have I endured, what have I lost, what have I suffered? What am I still enduring?

I went on to explain that given the magnitude of the diagnosis itself (regardless of cancer type or stage), given the magnitude of the cultural and societal baggage around the term "cancer," and given what I have learned over my 20+ years of interactions with so many individuals marked by cancer, be it "Stage Zero DCIS" or "Stage IV Whatever," I could confidently affirm that there is always collateral damage from a cancer diagnosis.

Dude, there is no good cancer.

No Evidence Of Disease

No Evidence Of Disease is the accurate term to describe, in my opinion, what you are when you have no evidence of disease. It's that simple.


There are people who like to call themselves thrivers. Sadly, while I aspire to thriving status — and while I have times when I am thriving — as far as my experience is concerned, that term in no way does justice to the aftermath of cancer. 

I am still fighting (yes, I AM most definitely fighting, battling, brawling) my way back from three cancers. 

For just one aspect of the reams of long-term side effects of "surviving" a cancer diagnosis, see Liz's and Diane Mapes's work on #FinancialToxicity.

Egregious and Damaging: "Lost The Battle With Cancer"

Lastly, "lost the battle with cancer" is an egregious, inaccurate and, damaging term that must never be used to refer to what happens when a person dies because treatments failed them. The correct term must be a version of reality: treatments did not work, treatments failed the person, science was not advanced enough to stop the cancer from killing the person, medicine lost the battle.


Late breaking additions to this post:

  • Here is the link to Liz Szabo's discussion group.
  • Here is an article ("How Should We Talk About Cancer?") by Dr. Darren Saunders, who tweeted me the link.
  • And now this — today brought news that Olivia Newton John who was diagnosed with early stage breast cancer in 1992 has found that that cancer has metastasized.

Friday, February 3, 2017

Surviving Survival

I wrote this on October 3, 2010

"First you have to survive cancer, then you have to survive being a survivor."

Sunday, December 4, 2016

On Tolerating Uncertainty

I found this gem in my Tumblr archive. I posted it back in October 2011 and completely forgot about it.

Five years later it rings just as true as it did back then, and even more so since I attended the first Shared Decision Making Summit where I gave a presentation about my own decision making process around genetic testing. That presentation was based on this blog post in which I remarked on the value of tolerating uncertainty.

Here's the gem from my Tumblr archive:

This great quote addresses the difficult decisions one has to make when faced with a breast cancer diagnosis. It’s from an excellent blog post by Lisa Bonchek Adams in response to a post by Dr Susan Love about wishful thinking and breast cancer:

“I personally believe that the ability to tolerate ambiguity and uncertainty 
is a key part of the decision-making process.
I don’t say I’m cancer-free: I never say that.
I never say a double mastectomy means I won’t get cancer again.
I know what I had.
I know what I did.
It’s about well-informed choices.
I know what might happen…
In the end, it’s not just about the statistics: it’s about the person.”

—Lisa Boncheck Adams

Tuesday, September 27, 2016

May The Odds Be Ever In Your Favor, Or, My Adventures In BRCA 1 & 2 Testing

When I was first diagnosed with early stage invasive breast cancer, I was 29 and it was 1994. I was not married, I was not in a relationship, I had not had any children… and, nobody in my family had ever had cancer.

A few years after I had completed surgery (lumpectomy and removal of about 20 lymph nodes from under my arm), radiation and chemotherapy, my oncologist was urging me to get what was then a very new kind of test: a blood draw to see whether I had the BRCA 1 and 2 Genetic Mutations.

When she first told me about the test for the two mutations and recommended I take it, I did what I always do. I researched the the ins and outs of it, beginning with an in-depth conversation with her: pros, cons, knowns, unknowns… and I spent much, much, much time reading, researching and pondering it so as to have a 360 degree understanding of everything that testing or not testing would entail for me.

Then I went back to see her and ran these assumptions and conclusions by her:

Assumption 1: I was being “watched like a hawk.” This was my oncologist’s oft repeated mantra at my several times per year, anxiety- and misery-producing follow up appointments which would occur, like clockwork, after my regularly scheduled, #scanxiety-producing screening appointments. I had been diagnosed with cancer at a young age, nobody knew why or how it had happened, and despite all the aggressive measures I had taken, there was absolutely no way to guarantee that it had not or would not metastasize (aka, come back and kill me). Hence the Hawk Surveillance Protocol.

Assumption 1.a.: Because I lived neither in Antarctica nor on a desert island, but in Los Angeles, I had quick access to world class medicine and doctors thanks to a great insurance policy that I was sacrificing many things to maintain.

If BRCA Positive: If we found that I was positive for one or both mutations, my only options were the A and B combo below:
  • A. Radical Surgery Amputation and Mutilation... as in, taking almost everything that made me a woman off of and out of my body. Removal of both breasts, both ovaries and both fallopian tubes (goodbye any possibility of having children, goodbye sexuality as you once knew it, hello menopause 20 years too soon).
  • B. Continue With The Much Dreaded And Life-Disrupting Hawk Surveillance Protocol... for, basically, ever, because, and THIS IS KEY: Even with radical surgery there was still a chance I could develop breast and/or ovarian cancer in the corresponding microscopic cells that escaped the scalpel (there is no way to guarantee that every single potential offensive cell is removed). Sure, only a teeny tiny chance, but then again, when I asked what my odds of getting cancer had been as a 29-year old with no family history of cancer, the answer was “maybe 1%.” Alrighty then.

If BRCA Negative: If we found that I was negative for both mutations, my only options were this A, B and C combo:
  • A. Continue With The Much Dreaded And Life-Disrupting Hawk Surveillance Protocol .. for, basically, ever.
  • B. Hope And Pray... that the cancer would not metastasize.
  • C. Stay On Top Of Developments In Science and Medicine... while hoping and praying for, and I am revealing my hand here, truly actionable progress.

After all my due diligence, the conclusions I came to made me want to tear my hair out. They just did not seem to make any sense.

The only thing that made any sense was that I was basically screwed either way and, the best thing genetic testing as we knew it then could offer me was the iconic phrase from the Hunger Games: “May the odds be ever in your favor.”

And so, I decided to refuse BRCA testing.

My oncologist was not happy, but, her picture should go on a billboard next to the definition of Shared Decision Making. We were able to discuss my conclusions and concerns for my quality of life, and when she was confident I was making an informed decision she gave me her blessing. This did not mean she was giving up on the idea of my getting tested—she continued to check in with me on the topic in our subsequent appointments over the years.

What has left a deep scar is the extreme resistance I encountered from every other doctor I encountered in my many, many, many various and sundry follow up and screening appointments.

These “I only want what’s best for you” doctors would immediately ask if I’d had the test and upon hearing my reply, urge me (aka, give me unflinching reams of unsolicited advice; these were not oncologists—I’m talking radiologists, allergists, dermatologists, gynecologists etc.—and this was none of their business) to get tested, usually justifying their advice with words spoken ominously: “because of your history” and “because you are so young.”

They all had a lot to say, but none of them were interested in my reasons for refusing.

At one appointment it got so bad that, in tears, I had to tell this one doctor to never bring up the topic with me again, and at another, my soon to be not ob-gyn breezily said: “if you’re positive, I’ll just take everything out.” She didn’t follow those words with “no big deal,” but given her tone of voice it was implied.

No big deal? SRSLY?

Looking back, I can now appreciate that the idea of a simple blood test—one pinprick, one vial—being able to predict a person’s risk of developing not one, but two deadly cancers (breast and ovarian) was a major, major oncology breakthrough.

And beyond predicting a person’s risk, that blood test could also serve to explain WHY someone—especially a young woman—had developed cancer in the first place.

So yes, genetic testing for breast cancer was new and shiny and exciting and it now makes perfect sense why all of these doctors were so enthusiastic about my getting tested.

It does not, however, justify them ignorantly bullying me, trying to reassure themselves at my own expense.

Funnily enough, I am confident that my decision to refuse genetic testing actually helped me.

Eleven years after my first diagnosis, my oncologist found a new breast lump when digging deep into my breast tissue. After the biopsy confirmed it was indeed a second, primary invasive breast cancer, she said “you need to be tested for the BRCA 1 and 2 mutations now.” Without the slightest hesitation, I agreed.

Irony of all ironies, I tested negative for both mutations.

Bottom line, in retrospect, not knowing that I was BRCA negative helped me diligently stick to the agonizing Hawk Surveillance Protocol, which led to my 2nd diagnosis (and later on 3rd primary diagnosis) happening at a very early stage.

Going to those appointments ripped large chunks of myself out of me. They reactivated prior traumas and engendered new ones. But, the unknown is what kept me faithful. Had I learned my negative status earlier, I might have blown it all off.

In conclusion, this is what worked for me.

I am not advising anyone or everyone to do what I did, but I am telling this story to remind people that things aren’t always black and white, and that WE NEED BETTER, MORE HUMANE OPTIONS for people who learn that they have genetic mutations like BRCA 1 and 2.

Removing both breasts, ovaries and fallopian tubes is not a truly acceptable option, especially for younger women, given the profound physical and emotional impact those surgeries incur. We have to do better.

It may be empowering for the right person at the right time to have more data—but to me, more data without truly actionable solutions given my circumstances was simply not good enough.


This post has been in the works for a few years. The invitation to speak at the first Shared Decision Making Summit was the impetus to finalize it and use it as the basis for the talk I gave there.