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.
Showing posts with label survival. Show all posts
Showing posts with label survival. Show all posts
Sunday, February 4, 2018
Friday, September 15, 2017
Death & Bereavement In The Digital Age - A Panel Discussion At Stanford #MedX 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.
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...
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.
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:
If BRCA Negative: If we found that I was negative for both mutations, my only options were this A, B and C combo:
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.
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 SurgeryAmputation 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
Tuesday, February 23, 2016
Wednesday, January 13, 2016
Friday, December 11, 2015
Scene Of The Cancer Crime, Or Adventures In Cancer PTSD
This happened this morning:
... and, from after the appointment:
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.:
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:
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
Friday, April 12, 2013
Collaborative Medicine in Action
Participatory medicine! #MedX RT @stales: Breast Cancer Community: Unique Opportunity 4 Patients & Advocates! bcsmcommunity.org/unique-opportu… #bcsm
— Liza Bernstein (@itsthebunk) April 11, 2013
Others chimed in, including:
RT @chemobrainfog: Thanks @jrgralow for asking for input BEFORE study is designed. ow.ly/jYIMB ==== "patients as partners" #bcsm
— Alicia C. Staley (@stales) April 11, 2013
And:
Thnx! MT @boobcancerninja: I did it! MT @seattlecca: Pts help design clinical trial answering 5 Qs via #BCSM [SURVEY] ow.ly/jYVnJ
— Julie Gralow (@jrgralow) April 11, 2013
I've excerpted the introduction from that post here:
Unique Opportunity for Patients and Advocates!
By DrAttai On April 11, 2013 · 13 Comments
Here is a unique opportunity for patients to have their voices heard, BEFORE a clinical trial gets approved. Many thanks to Dr. Julie Gralow (@jrgralow) from the University of Washington for asking for advice from our community.
Patient Survey Regarding Follow-up of Early Stage Breast Cancer
We are seeking patient input through this survey to help in planning a national clinical trial designed to determine how to optimally screen for breast cancer recurrence.For details about the clinical trial being planned, please read the rest of the post. It's important and fascinating.
Just as important and fascinating is the ensuing dialogue, much of which was sparked by the last (and only open-ended) question in the brief and easy Patient Survey. I saved my answer to that question, and am reproducing it here:
"Last Question: This study would allow us to study many other breast cancer “survivorship” questions during long-term follow-up. What are the main cancer and/or treatment-related problems that you think we should consider including in this study? (for example, this might include difficulty concentrating/”chemobrain”, menopausal symptoms, numbness/tingling, depression/anxiety, pain, weight gain, sexuality/body image, fear of cancer returning)."
"All the items mentioned in the above question should be included.
I would be most interested in seeing how you would approach studying these additional important issues so as to get actionable data.
People who survive early stage BC after receiving adjuvant treatment (I have had three primaries myself, so I know from experience) end up with a host of long term side effects, from chemobrain/cancerbrain to higher instances of anxiety/depression/"ptsd"-symptoms, etc. I know you know this too.
Another aspect of long-term survival is the psychological impact of being watched so carefully by one's medical team (pro = more likely to find a recurrence or relapse sooner; con - heightened anxieties, etc due to fear of recurrence). Being followed every few months with blood tests could both give a sense of reassurance and heighten the anxieties. This also contributes to the isolation many survivors experience. You have to keep going back for follow-up visits, keep wondering if IT has returned, while most everyone else you know continues with their usual routine.... This is what you just have to learn to live with.
Meanwhile, now that I am in the position of basically having to rely on hoping I don't get any symptoms, it is terribly anxiety-producing. My oncology office happens to order tumor markers during long-term follow up, so if mine happen to go up, I will be one of those few women who will have an additional possible clue as to whether I have developed mets. I also understand there isn't always a 1-1 correlation between marker levels and the development of mets. More uncertainty!
This is a great idea for a study. I just hope there will be other more reliable pathways to detecting Early Stage Mets (for example, non-increased-radiation studies: I'm tapped out for PET and CAT scans, per my oncologist, due to the numerous scans/mammos, etc I've already had in my 19 yrs of 3 BC primaries. We will only use those in an emergency at this point.). We need better tools!
I appreciate your thoughtfulness and intelligence in reaching out to us in these preliminary stages of your trial. My name is Liza Bernstein and I can be reached via Twitter at @itsthebunk. I'd be happy to contribute further to your thinking process during this development process and answer any questions you might have, if you were so inclined.
Thank you,
Liza Bernstein"
Not surprisingly, some of my concerns are echoed in the comments from other survivors, and the great thing is that the researchers are addressing them as they come up.
Surely this type of dialogue will help researchers design even better and more relevant studies. It certainly empowers survivors to join in the process. The ensuing dialogue gives me hope that our ideas and concerns will be seriously considered.
This is an example of what collaborative medicine, fueled and enabled by social media and technology, could look like.
Saturday, April 7, 2012
Susan Niebur and Pinterest
Known, admired and much loved on Twitter by the #BCSM (Breast Cancer Social Media) community, Susan, aka @WhyMommy, was an extraordinary "ordinary" woman we recently lost to Metastatic Breast Cancer. The example she set is a source of inspiration and courage when my doubts about being "out" as a breast cancer survivor threaten to consume me, and I wish I had gotten the chance to get to know her better.
Friday, February 10, 2012
Return of the Fatigue Monster
I have been battling the Fatigue Monster for the past five days, and when he (FYI, I arbitrarily designated this Monster as a male of the species; it could just as easily have gone the other way) hits hard —he must have copped some serious roids lately—I get to feeling like I must have had me a good ole round of chemo, just without the nausea.
If you’ve been there, this might sound familiar: every cell in your entire body hurts and aches, on top of which you could swear someone yoked you to an anvil when you weren’t looking, because walking has somehow been replaced by the excruciating dragging around of your now pathetic, humiliated self.
And, of course, nothing really helps you feel better fast enough, not Advil, not a nap, not a “walk,” not caffeine, not fresh organic food, green tea or mac ‘n cheese, not chocolate, not Western medicine, not Integrative or Complementary either, not yoga, not meditation, not anything. The Fatigue Monster has prevailed and you are now its lowly slave.
This becomes all the harder to bear when you are already two years out of chemo, and one year out of a couple of major surgeries: You feel like you should be so much better by now. And if you’re anything like me, you have always been a striver, a do-er, a putter of much pressure on yourself… a person whose will and tenacity had made it seem like you could get through all sorts of unusually harsh life-events and come back to The You You Thought You Knew—you know, the one with all that determination, energy, good cheer, and…. drumroll….. STAMINA. Aaaargh..
(January, 2012).
The Shadow
 |
| Gaaaaahhhhhh!!! |
A wise man I know calls one aspect of this "the shadow of cancer." As in, once you're done with treatment, you're never "really done," because you have no way of knowing if it will come back or if you'll get a brand new one, or .... not.
That is something you have to learn to manage, and 30 days of 24/7 ubiquitous pink can get in the way of that.
As a fellow traveler on the verge of tears said to me the other day, as we both left the oncology office, "I'm just trying to live my life, and everywhere I go, it's PINK."
This brave woman is in great health. She's 3 years out from her battle with BC, but that relentless shadow still terrifies her. (October, 2010)
Friday, February 11, 2011
October 2010-For Once, Not So Deeply Affected by The Pink
I've hated October for the past 10 + years because I couldn't stand the constant reminders to be Aware of Breast Cancer, it being Breast Cancer Awareness Month and all.
I was already very much aware of it, thank you very much. And, I was actually trying to decrease my Breast Cancer Awareness in the hopes of decreasing my Rampant Cancer Anxiety of the "my elbow's sore, so I must have elbow cancer" variety (it was tendonitis, of course).
This year, surprisingly, it's not bothering me. Maybe deciding to share some thoughts is allowing me to kick its ass (BCAM's, that is), and therefore not be so bent out of shape by all the pink ribbons, pink events, pink t-shirts.... all that damn pink!
Or maybe, better yet, I've traveled far enough on this path, processed so much suffering (yes, I used the S-word!), that the knee-jerk PTSD-style reaction to all that Pink Ribbon Fever has decreased significantly.
It's called HEALING, Baby!!
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