Wednesday, April 29, 2020

Out Of Touch

Photo by Adrian Pereira on Unsplash of two koalas
Photo by Adrian Pereira on Unsplash
I can’t remember the last time I shared a hug or even a pat on the shoulder of affection with someone, or played with my friend’s dog, felt its velvety ears, and kissed its beautiful head.

Checking my notifications by touching the hard surfaces of my computer, it was likely around Friday March 13th, the day that friend and I went to curbside-pickup the small chest freezer I had ordered as part of my pandemic shutdown prep.

I am staring at that white rectangular appliance's clean, clinical, efficient, and almost silent lines right now. It represents survival and a relative level of privilege I am acutely aware of. It is instrumental in helping to nourish and sustain me given the limitations of the small, dorm-style fridge I am stuck with for the time being (I live in a small studio).

Something about the fact that the freezer's job is to create Arctic conditions and transform soft food into hard blocks seems very much on the nose these days. I can always defrost the raw materials and make meals with them, but no matter how many memes declare that Food Is Love, I can assure you that food only provides the foundation of Maslow's hierarchy of needs.

Every single individual on the planet is experiencing COVID-19 and its extensive collateral damage in some way or another at this very moment. That, plus the awareness of that, creates a double whammy of existential stress. If we had even a crude device to measure anxiety emissions, and if those were an actual trackable thing, it would likely yield a global predominance of ratings from medium to acute. I picture our Earth almost suffocated by a fog of orange and red data visualization pixels, with various patches of green thanks to all the meditators.

I am reminded that these events invaded my non tabula rasa life. I am so bored and tired of telling people I have had cancer three separate times. I wish I could erase that past, and the past that came before that. All those traumas. But that is not how life works. No matter how hard we work on ourselves, nothing short of a total brain-ectomy can undo what has been done, what we have lived. I have worked with a therapist, and continue to do so. I have made so much progress. I have come so far. But I have deep scars. I am riddled with them. Maybe they and the work I have done to manage the fallout have made me stronger, more resilient, have proved how "brave" I am and how "strong." But none of those so-called achievements can completely stop the effects of previous, repeated post traumatic stress injuries when there is little to mitigate them.

I eat chocolate for the sweet, comforting oxytocin simulation it provides. I share laughs and tears through devices and screens — years of isolation and a relatively early adopter's embrace of technology as a tool for deep connections and friendship-building have given me a head start in this regard. But nothing can ever come close to the soothing power of touch between two sentient beings, the skin to skin, or skin to fur transmission and confirmation of love, affection, and belonging. I know this because I was already touch-starved long before this pandemic was born.

Panic — throat-constricting-to-the-point-of-almost-suffocation-so-I-have-to-force-myself-to-take-painful-breaths — rises as I type these questions: How many more months (years?) until I can hold someone in my arms again? Snuggle with a dog? Kiss a person? Will I ever again get to sit with and hug my mother?

Saturday, March 21, 2020

It's #COVID19 — Start Where You Are...

Start where you are, use what you have, do what you can.
— Arthur Ashe

So that's what I am doing. I am not setting a goal to revive this blog, or to write every day or every week, or whatnot. I am just going to set the intention to share things when the feeling rises.

Here, in no particular order, are some insights, resources, and other things that have caught my attention, helped, made me laugh, and more.

On Trauma, Anxiety, and Freaking All the Way Out

One of my interests, out of necessity, is managing the fallout from trauma and PTSD. Those of us who've experienced severe trauma, catastrophic diagnoses and/or life events, early childhood trauma (ACEs) and more, are likely highly and easily triggered right around now, given where we are with #COVID19 plus the 24-hour news cycle app alerts, and the bottomless cesspool of social media scrolling. But, the cesspool has gems too, some of which I'll share below.

Embedded Memories Reactivate

In this Twitter thread, author Ijeoma Oluo illustrates what I was trying to describe to friends a couple of days ago. How the embedded memories of The Terrible hijack your rational mind. Some key tweets from the thread:

Oluo clarified in a later tweet that she meant "epicenter in the U.S." This reply to her from Kat Kinsman underscores the weird disconnect:

The Panic Attacked Me

I felt this deeply on Thursday, when the bubbling, frothing mix of everything I had been observing over the past weeks exploded in my brain. Beyond the deaths and suffering wrought by the virus itself, and the infuriating, despicable incompetence of this country's present leadership, what did it for me were the beginnings of the global economic meltdown, and knowing first hand about the lack of universal healthcare and a meaningful social safety net here.

I woke up attacked by panic. Yes, that construction makes sense! The panic attacked ME.

Kinsman's sentence "There is a part of the psyche that never quite heals if you've ever had to..." applies to all the If You've Ever Had Tos. As I shared with some fierce women who have recently become friends:

I have been ruined economically THREE times and am still rebuilding. This year was getting off to an amazing start and it much of it has come crushing to a halt. I am grateful to have a roof over my head (for those who don’t know, I was homeless for 5 years after 2012 due to 3 iterations of cancer financial toxicity—couch surfing, house and petsitting etc). 
Right now I am “fine”—I have contract work. But if that stops I have no recourse that I know of for unemployment or disability via the state of California as it was all 1099 (self-employed).
I think this is so terrifying for me because it is triggering…  am in too much of a panic attack state this moment to explain the mechanism, but the burned-in memory of economic ruin and having to couch surf and depend on, at times, literally the kindness of strangers is like a Monster. 
I have fought so hard to claw myself back from that situation and now this. 
But I am not back there. I am just afraid it will happen again.

Some Things That Have Helped

"This Is Not My Permanent Reality"

One thing to keep in mind is that panic attacks and other emotional tsunamis pass. It helps to remind ourselves, as my wise friend Terri Wingham often says when we discuss the collateral damage of a cancer diagnosis: "This is not my permanent reality."

Yes, of course, for now, #COVID19 feels like the entire world's permanent reality. But within that, there are moments, nuances, and joy. There is hope, a delicious piece of chocolate, or a beautiful flower, or a hilarious meme, of if you're lucky, a dog to play with, a loved one to hug (if you're in the same home and healthy!)... or whatever floats your boat.

Speaking of boats:

Advice From a Former Submarine Service Member

This Twitter thread from Jon Bailey* is full of great ideas, and I love how the author frames this as a "patrol" we are all on. Read the whole thread!
*I have never interacted with this Twitter account before so am sharing it at face value.

Wisdom, Skills, and Sweetness Via Animation 

Acceptance and Commitment Therapy (ACT) has been on my radar, and I came across this tweet from @ActAuntie. Just hearing the kindness in the author's voice brought me to tears. My own therapist regularly tries to help me with these types of reframing and mindfulness exercises, and it most often annoys me. But sometimes it helps and it works. I am going to consider watching this video on the regular:

Social Distancing Social Schedule Overload

I leave you with this share from actor/writer François Morel. It's in Italian with French subtitles from Italian comedian Paolo Camilli. If you know that the French word "agenda" means "schedule" or "planner/calendar" in English, and that "confinement" is the official term for the French "Stay at Home" rule, I think you will grasp the gist even if you don't speak either of the two languages. Dude basically starts out saying that social distancing is a great reason to take advantage of solitude to get in touch with our inner selves, and then straightaway says "yes let's FaceTime, say when!" and it goes on from there. (Late breaking addition: It's on Paolo Camilli's Instagram with English subtitles.)


Thursday, August 22, 2019

Spoiler Alert: The Cure For Advocacy Fatigue Is Partnering As Equals

I am publishing this Twitter thread here on my much-neglected blog because the words came straight from the heart. As they tumbled out of my brain yesterday afternoon, I was reminded just how exhausting it can be to be an advocate in a system based on an imbalanced power structure. The person I address in the first tweet and the topic it refers to are not the point or the focus. The point and the focus are in the rest of the thread.

I have decided that I must be suffering from Relapsing Remitting Advocacy Fatigue (if you've ever had cancer or been close to someone who has, you know that Fatigue is the F-Word of Cancer—it does NOT mean "tired" and is not mitigated by naps, juicing, yoga, positive thoughts or much of anything else).

Earlier this year, I had written about the costs of advocacy, and later, about the imbalance in doctor and patient advocate Twitter engagement at ASCO 2019 for Symplur's blog. Looking back, I see the fatigue has been building.

It takes energy to do the work we advocates do, and then it takes extra energy, especially after gains have been made, to have to fight to be seen, heard, respected, included, and even further energy to try to do so with some measure of grace.

The irony of this thread is that hours beforehand, yesterday morning, I had had an invigorating and inspiring conversation with oncologist Gil Morgan, who had reached out to me to join his international OncoAlert network in a spirit of equal cooperation. Being dismissed and erased later on—even if due to "benign neglect"—was just another reminder of how much work we all still need to do.

I might be in the throes of Advocacy Fatigue, but I am not stopping my work anytime soon. I know that the cure for it is to partner as equals (which is actually fun!).

In conclusion, I highly recommend this article, shared by my fellow advocate Erin Gilmer:

Sunday, February 4, 2018

Old And New: Yarn And Life

Finding an old post (embedded below from tumblr) can sometimes be a little mind-blowing. From where my head was almost exactly 6 years ago (Friday, January 13th, 2012), to the fact that so much has changed, and so much has stayed true since then.

Right now I am in a {pic} deep {pic} knitting {pic} phase {pic}, and it's about learning new techniques, stretching my capabilities, and for the first time in a long time, doing things Just For Me.

That might sound terribly selfish, but given Everything I Have Been Through (and cancer treatment is only part of the EIHBT — surviving without a real home or real-deal paychecks for nigh on 6 years adds a little strain), it is high time.

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.

Added after the fact: the video of our panel.

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."