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:

When I was a kid I was known as the kid who didn't have any food at home.

It's amazing how quickly that trauma takes over in this crisis when I'm trying to reassure myself that I can keep my kids fed in a quarantine situation.

— Ijeoma Oluo (@IjeomaOluo) March 18, 2020

For some reason, the part of me that knows we can get through this because I got through this is being shouted down by the part of me who doesn't want her kids to ever feel the same uncertainty of where their next meal is coming from that I grew up with.

— Ijeoma Oluo (@IjeomaOluo) March 18, 2020

Note: I'm fine financially. We are fine. That's what makes this even more ridiculous. It's just being here in the epicenter of the outbreak, stuck in home, worrying about what happens if we can't get to a store.

— Ijeoma Oluo (@IjeomaOluo) March 18, 2020

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:

I'm so sorry. I'm being weirdly panicky and am almost afraid to eat because I'm afraid of running out. There is a part of the psyche that never quite heals if you've ever had to worry about having enough food, but I hope you can find a place of safety.

— Kat Kinsman (@kittenwithawhip) March 18, 2020

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!

During my time in the Submarine Service, I - along with many others - endured many weeks and months cooped up in a steel tube under the waves. I just thought I’d share a few coping strategies for many of you now facing a Covid-19 “patrol”. pic.twitter.com/m9ObHd6FU9

— Jon Bailey (@SloopJontyB) March 20, 2020

*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:

A collection of some ACT skills that I hope you may find helpful in these challenging times xx🐰https://t.co/WfL0ueD9di#anxiety #fear #uncertainty #worry

— ACT Auntie (@ActAuntie) March 21, 2020

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.)

Enjoy!

pic.twitter.com/GzdHCo3j4X

— François MOREL (@morelexplo) March 21, 2020

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.

Survivors

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.

Puh-lease.

"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.

Thrivers

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.

#WordsMatter

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.

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 I had been socialized to believe 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.



NOTE

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.

.@stales TY for taking this pic-from my talk at #SDM16 on my experiences with Shared Decision Making/Decision Processes in healthcare. pic.twitter.com/nAHqcbNWev

— Liza Bernstein (@itsthebunk) October 25, 2016

Quick Recap: An Evening With David J. Morris At UCLA