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.

All The People Who Died

I always forget that one grief is tied to all the others. That one loss revives all the others. That—at least for me—someone else's loss, someone else's pain can reactivate my own.

Grief is an everlasting, tricky companion. It lies dormant. And then, unbidden, it wakes up, butchering your heart all over again.

— Liza Bernstein (@itsthebunk) September 6, 2016

I experienced my first loss at age four. My father died. His name was Harry. When I was a little older I found out he had taken his own life.

Then three years later, my grandfather died. His name was also Harry. I called him Papa. His second heart attack killed him.

My mother and I moved back and forth through different countries, and the losses kept piling up: Loss of home, of family, of friends, of community, of schools, and even of landscapes.

My family—a dual lineage of stalwart survivors—handled loss with a combination of denial and a stiff upper lip, and therefore, so did I.

We didn't know any better.

More people died. My great-grandmother. I called her Gran Gran.

My three remaining grandparents. Bobba, Zaider, and Marzie.

And, they have kept on dying to this day. 

My two aunts. Beebee and Pam.

My Cousin Al.

And, more beloveds: Beloved friends, beloved colleagues, beloved mentors. Grant, Jody, and more.

And just a week ago, an 18-year old boy I had never met took his own life. His parents are friends of my dearest friend. Their kids were at school together, played together, grew up together. 

I have never met his parents. But my friend's grief, the boy's family's grief, the children's grief, the community's grief, the fact that like my father, the boy took his own life, all of that made a beeline for my heart and ripped it to shreds all over again.

It has taken decades, but over the past few years I have learned that the only way to handle grief is to face it, to name it, to let it live in you, to let it hijack you, to surrender to it. 

The practice does not come naturally to me. It explains why I am so surprised and resentful each time I am overcome with a sadness so acute and painful it stops me in my tracks.

I leave you with the song that says it all for me: Jim Carroll's "People Who Died." Everything about it, the raw, punk sound, the lyrics, the absurdity, it all speaks to me like nothing else.

I chose this version from YouTube as it showcases Carroll's lyrics. 

Scene Of The Cancer Crime, Or Adventures In Cancer PTSD

This happened this morning:

I am *only* in my onc's waiting rm 4 bone density scan but as soon as I walked in tears started rolling. Argh. #ptsd #SceneOfTheCancerCrime

— Liza Bernstein (@itsthebunk) December 11, 2015

... and, from after the appointment:

Still shaking from the most benign visit to my oncologist's office. Monday is the actual follow-up appointment. :( #CancerPTSD #bcsm #ptsd

— Liza Bernstein (@itsthebunk) December 11, 2015

I've had the same, wonderful oncologist since 1994, and I've had three separate cancer diagnoses. I've therefore spent an inordinate amount of time in her offices.

Her and her partners' large practice used to be in the medical tower adjacent to the hospital. I hated that office with a passion. Those hideous pink vinyl barcaloungers, aka chemo chairs, where I spent so many toxic hours. Plus the years and years and years of regular follow-up visits ("I'm watching you like a hawk because you were so young when you were first diagnosed," she'd always remind me), blood draws, false positives, difficult conversations, agonizing decisions... not to mention the super slow and crowded elevators.

And then, they moved! To a brand new building with much less worse interior design, lots of space, and most crucial for me, no traumatic history. All was sorta kinda ok for a while, even though the regular follow-up visits still brought up their putrid soup of anxiety, terror, anger, despair and other feelings that I had come to understand were "normal," post-traumatic-stress-style reactions to what had certainly been a series of traumatic events.

Then, my positive response to the new office changed with my second Cancer diagnosis... and a few years after that, my third. I now hate that place with a passion as well. I find it ironic that I am even saying this as I do not consider myself a "hater." Maybe there's a better word to use, but I am still so shaken from this morning's appointment that I am not going to even try and scrounge around my brain to find it.

I am still so shaken because I am shocked at what I consider to be the extreme level of my reaction. It is in no way shape or form proportionate to the reason for my appointment.

I realize though, that I have had a lot on my mind lately:

1. From the Paris Attacks to the Colorado Springs Planned Parenthood shooting, to the San Bernadino shooting (to mention just a few) to the rise in popularity of fascist-style, xenophobic bullies and haters (the man with the bad hair - I am not going to dignify him with his name; the extreme-right wing party in France - ditto for them), the end of 2015 is a dark, dark place and time.

2. Closer to home: the death of Breast Cancer Advocate Maria Fowler in and of itself, and then, selfishly, the fact that it has coincided with my new and impossible-to-kick persistent cough. I've been running scenarios in the middle of the night.:

Ok, if, God-Forbid, I have Mets (Metastases, aka, Metastatic Disease, aka, Stage IV Breast Cancer), what do I do? Who do I tell? I can't tell anyone this time. I can't tell my mother. It will crush her. Where will I go? How will I support myself? I am not ready to die. I have so much left to do and I am really only just getting started, only just beginning to get some good momentum. Gaaaaaaaah!

It's exhausting to then have to sit with myself and remind myself over and over and over again that:

This. Is. Just. Stuff. In. The. Ether.
These. Are. Just. Thoughts.
This. Is. Not. Reality.
I. DO. NOT. HAVE. METS. (Fingers crossed. As far as I know. I don't want to jinx this. Gaaaaaaaaaaaah again!).
BREATHE!!!!!

3. In three days I have to return to the office for the actual follow-up visit with my oncologist.


All of the above, plus the deep-down dread that has unfortunately become a permanent fixture of these follow-up appointments is likely responsible for this perfect storm of post-traumatic-stress misery.

And then I need to remind myself, again, that yes, again, my case is unusual. I have had Cancer three, yes, THREE times. If one diagnosis does something to a person—and, oh, yes it does—well then, the effect of three.... that math is beyond me.

And, I need to remind myself, yet again, to be kind to myself (why is it always so much easier/natural to be kind to others?), that, the sooner I allow these feelings to rise up and express themselves, the sooner, like a raging flash flood, they will pass.

All of this "I need to remind myself again" sounds like and feels like hard work, and, guess what.... it is. I don't like to think of myself as a complainer, but right here and right now, I am owning it. I am complaining, dammit.

*  *  * 

On the plus side, these responses to my two tweets warmed my heart and gave me much needed comfort:

@itsthebunk Sending you love, a soft voice, a listening ear, and someone to lean on.

— Charlie Blotner (@CBlotner_) December 11, 2015

@itsthebunk man have we all been there--I wish I could hug you right now!

— CultofPerfectMomhood (@CultPerfectMoms) December 11, 2015

Farewell, Madiba.

#phoster pic.twitter.com/dARCtPnYSP
— Mindy SchwartzBrown (@schwartzbrown) December 5, 2013

What Inspiration Looks Like

This is what should appear when you look up the term "inspiration."

Watch Terri Wingham's short video to Sir Richard Branson, read about her brilliant #Delhi2013 program, and join the Mob For Good with a simple RT, a blog comment, a Facebook share, etc.

Working together we can help the A Fresh Chapter Alliance Foundation send 12 cancer survivors to volunteer in India in February 2013. They are going to Delhi to serve on community projects and get to know local cancer patients.

Once their mission is accomplished, they will have had a tangible positive impact on the lives of others and, almost unwittingly, gained immeasurable personal healing as well.

Beyond that, they will have brought our vastly differing circumstances closer together and shed light on global cancer issues:  How can it be that women in Africa would rather get AIDS than cancer? How can it be that cancer patients in Vietnam must sleep on the street when receiving treatment at hospitals far from their homes?

I am so proud to know Terri and thank her for inspiring me. I hope she will inspire you too.

Here is my note to Sir Richard Branson in support of #Delhi2013. It's one of the many comments to Terri's blog post. I hope you'll add yours!

Thanks for reading.

Liza

* * *

To Sir Richard Branson,

It’s a No-Brainer: Virgin Airlines is the perfect company to sponsor the A Fresh Chapter Foundation’s maiden voyage. Visionary, cutting edge, social, driven, global, daring, walking the talk (in this case, dare I say Flying the talk!)…. these are just a few of the qualities you and Terri, and Virgin and her foundation share.

After a cancer diagnosis obliterated Terri’s life as she knew it, she fought back, not only to regain her health, but to explore the world, and, here’s what’s truly outstanding: to Give Back. She discovered for herself that there is no greater healing power than to care for others. She could have stopped there.

With that, however, she chose to empower fellow cancer survivors to understand this wisdom and put it into practice for themselves and those they will soon be serving on the other side of the world.

Starting with nothing, she has built a solid program, forged international alliances, recruited 12 outstanding cancer survivors, and organized all aspects of their mission to volunteer in Delhi, India in February 2013.

Her drive, genius, gigantic heart and brilliant mind led her to accomplish this in a very short time. All that remains for this mission to succeed is for Virgin to become our Official Airline.

I say “our” because amongst other things, I am a 3-time cancer survivor, a member of the weekly #BCSM (Breast Cancer Social Media) Twitter chat, a recipient of an #ePatient Scholarship to #MedX — Stanford University’s Medicine X — and I am looking forward to volunteering with Terri and her foundation on future missions to Africa and South America.

I urge you to partner with us!

Thank you for your attention,

Sincerely,

Liza Bernstein

The Healing Power of Yarn Tangles

I've been unraveling lots of yarn tangles these past three months -- literally, as I've been knitting and crocheting with fervor. It's also fitting because my life right now is behaving just like a huge mess of tangled, randomly and nerve-wrackingly intertwined threads of undisciplinable, knotted yarn. 

If you've ever tried to untangle a mess like this, you know the only way to succeed is to slow down, remove any and all attachment to the result, breathe deeply, relax your fingers and hands, breathe again, deeply, and again... And on and on until you and your hands accept the state of the yarn and gently feel their way through the mess.

You zone out, you become one with the yarn (yes, I know, the saying has become so trite, but its true meaning is profound), and over time, your fingers find their way through the tangles and knots. With gentle persistence, you somehow manage to unravel it all.

I started writing this post earlier this year -- in February, to be precise, the day after Rachel and Susan died. I left it mid-sentence and found it in my drafts box today.

It might do me some good to spend more time unraveling yarn... it's a great way to lick the Emotional Flooding Monster.