Tuesday, September 6, 2016

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.

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. 

Monday, July 4, 2016

Happy 5th On The 4th, #BCSM!

Dear #BCSM:
Happy 5th on the 4th!!
Here's to many, many more!!
Thank you, dear Jody (we miss you), Alicia and Deanna. And thank you to ALL. My life is a Zillion times better thanks to #BCSM.

Monday, April 25, 2016

Thank You, Jody

This post is in response to the recent announcement that Jody Schoger, co-founder of the #BCSM Chat and Community, has entered home hospice as her treatment is no longer effective. Jody has metastatic breast cancer.

I posted this on Facebook but want it to live here on my blog as well.

*  *  *  

Dear Jody,

The impact you have had on my life is profound and far-reaching, all the more so because you were always "just" being you, doing what you do.

Jody, you're The Person who quickly "saw" me, reached out and welcomed me to the wild wild world of Twitter in late 2010/early 2011.

You encouraged, mentored, and supported me in so many different ways.

Here's one of the most important: I don't know if you know this, but you are one of the advocates who set the example and inspired me to cease posting anonymously and take the terrifying step of being Out to the world at large as a person who has had cancer. And this was at a time when I was so extremely vulnerable and fragile in body, mind and spirit, just months after finishing treatment and surgeries for my 3rd cancer.

You are responsible for helping me somehow make it through that terrible day I experienced at the first breast cancer conference I naively attended: C4YW, February 2011: I didn't understand that attending a conference could trigger me, because I didn't understand that I had PTSD from Medical Trauma. Your DMs (direct messages) with me that day were a precursor to what we came to fondly call the #BCSM batsignal.

A few months later, you encouraged me to apply to Stanford Medcine X, we were both accepted, and you offered to be hotel roomies. The first time we spoke on the phone (to make those arrangements) we joked about hopefully not being axe murderers :-)

This photo of you is from that hotel room, after we had finally met in person. I will never forget how much FUN we had, feasting on delicacies we picked up at the nearby Trader Joe's, and goofing off by speaking in French accents.

I feel like I captured your sense of humor, joie de vivre and playfulness in this shot. Such a necessary contrast and corollary to the seriousness of our purpose.

The other photo symbolizes, to me, the profound impact you have had on the world beyond Breast Cancer. 

You, Hugo Campos and myself at that first Stanford Medcine X (technically, it was Med2), members of that group of founding ‪#‎ePatients‬ who, thanks to Larry Chu's invitation and challenge, came together to co-create and participate in an academic medical conference as equal stakeholders.

Jody, know that I carry you with me always.

Thank you for lighting the path and showing me the way

All my love and gratitude,

Update, Wednesday, May 18, 2016: I woke up to the news that Jody died this morning. Please read this beautiful tribute to her by #BCSM's co-founder, Alicia Staley: "Good Night, Jody."

Saturday, January 23, 2016

An Open Letter To CJ Cornelliusen James, Co-Founder Of Metavivor

Dear CJ,

I'm not one to jump into the fray and argue for argument's sake, but this one I have to respond to.

I began reading your post on the Metavivor blog: "An Open Letter To Fran Visco of National Breast Cancer Coalition" with an open and curious mind, ready to likely encounter something I would want to support and share with my network.

I am an admirer of Metavivor, given the 100% focus on funding research for Metastatic Breast Cancer (MBC).

I nodded my head in basic agreement/interest through the first three paragraphs, and then I had to do a double take:




CJ, I can understand that you and every other Metastatic Patient might be angry at the attention, focus and dollars given to early stage Breast Cancer in our culture.

Guess what: I and most every other early stage Breast Cancer "survivor"/advocate I know is just as angry.

And that is why we spend time, energy, effort and passion advocating for just the things that you are calling for in your letter.  It is why we join forces with MBC patients and advocate together. It is also why we are fed up with things like Pinkwashing, Komen's years of "awareness" media saturation, and beyond.

I don't understand, however, why you chose to publicly share your resentment of our putative "easier" situation and focus your argument there.

I might very well be NED (No Evidence of Disease) but you don't know my life. You don't have the vaguest idea of what I have been—and am still going—through after three separate early stage primary invasive breast cancers beginning at age 29.

And by the same token, you don't have any idea what other early stage "survivors" have been through either.

Diminishing and pooh-poohing our experience, stereotyping us and shaming us for any fear or pain we might feel does nothing to help anyone. Nor does reducing our lives to "odds of survival."

This alienating attitude, this pointless and unnecessary comparison—which, sadly, I have encountered many a time from some MBC patients—robs us both of a significant opportunity. The opportunity to befriend each other, to work together, to have compassion for each other, to see each other in our shared humanity.

In my opinion, this attitude of resentment is the opposite of what we often encapsulate in the term #FearlessFriends on the #BCSM chat.

I am sure all of us, regardless of stage of disease can agree with your words here...
"If you don’t tackle metastatic breast cancer… if you do nothing to prolong longevity, enhance quality of life and render metastatic cells dormant for those  diagnosed with stage IV breast cancer … then you are doing nothing to make a real difference in the breast cancer world."
...and here:
"So my input for 2016 is this: Focus on making a difference for the stage IV community. Without such a focus you fail not just the metastatic breast cancer community, you fail everyone."
I agree with them!

But placing us in opposition to make this argument is misguided and beside the point.

CJ, I have learned so much, grown so much and been humbled and inspired so much by my incredible fearless friendships with people like Rachel Cheetham Moro.

Rachel was the first Metastatic Breast Cancer advocate to open her heart to me and not resent me for having "only" been an Early Stager.

This is the exchange of tweets that opened the door and that led me to become an advocate for Mets:
The exchange comes from a milestone in the #BCSM Chat's early history: it was the first chat devoted to Metastatic Breast Cancer, and among the many important things it accomplished, it broke down the artificial wall of mutual ignorance and mistrust between Early Stagers and those with Mets, led to friendships and collaborations, and galvanized many an Early Stager to advocate for MBC.

Fearless Friendship is a two-way-street. Please consider our shared humanity. We are more powerful together.


Liza Bernstein

NOTE #1: After I published this post, a passionate discussion ensued on Twitter. I am attempting to keep track of it in this Storify: "Stronger Together Regardless Of Stage: A Twitter Discussion."

NOTE #2: Additionally, after I published this open letter, the article "Cancer, Bankruptcy and Death: Study Finds a Link," by Diane Mapes was published by Fred Hutch. It happens to shed some light on what I have gone through as an Early Stager.

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.:
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!).

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:

Sunday, January 19, 2014

MedX Live! Empowerment = Self-Care vs. Burnout

I'm excited to be moderating MedX Live this Tuesday, January 21st, 2014**—we have a crack panel of Stanford Medicine X attendees to discuss the power of self-care to beat burnout and fatigue. My guests are ePatients Emily Bradley, Hugo CamposBritt Johnson and Jody Schoger, and psychologist, Dr. Ann Becker-Schutte.

We'll share stories about using the conference's Wellness Room to manage the fallout from the heightened excitement, adrenaline and information overload experienced by ePatients in particular, and all attendees in general. We'll touch on the emotions that can arise from the types of pressures ePatients confront at events like these, and, if you've never heard the term "Spoonie" you'll learn all about it.

Then we'll zoom in and discuss Self-Care—the often underestimated and misunderstood tool available to anyone seeking to gain a measure of empowerment over stress, burnout and fatigue (including the Compassion Fatigue so prevalent in healthcare).
**MedX Live is a live Google Hangout and simultaneous tweetchat from Stanford Medicine X. Join us this Tuesday, 1/21/2014 from 5:30-6:30 pm. Watch the broadcast here and make sure to use and follow the #MedX hashtag on Twitter where Nick Dawson will be fielding your questions.

Food For Thought:

1. In this short video from Medicine X's "The Buzz With Hayley" series, Emily Bradley discusses the Wellness Room and the challenges a conference attendee with active disease symptoms might face:

2. A blog post about the Wellness Room; picture below:

3. Great blog post about an ePatient's decision to use the Wellness Room from the blog 710.9. Relevant excerpt:
The next morning, after opening remarks, I spent the first session in the Wellness Room. I didn’t want to. So far I had only used the Wellness Room during breaks. But I was really hurting, and knew that continuing to push myself would lead to even more pain, and keep me from really benefiting from the sessions I did attend. So, I planted myself on a lounger in the Wellness Room, turned on the MedX live feed on my laptop, plugged in my headphones and heating pad, and closed my eyes. That was a tough decision to make, but I probably got more out of that session via the live feed than I could have if I’d stayed in the room and watched it live, and it meant I was in better shape for the rest of the day. (emphasis mine)

4. In his "Healthy Boundaries" Just Talking podcast, fellow Medicine X ePatient Advisor, Chris Snider interviews Dr. Ann Becker-Schutte about self-care. It's an inspiring, practical resource.

5. Googling "Dr. Ann Becker Schutte Self-Care" yields a wealth of resources as she has written extensively on the subject. Here's a post that discusses whether self-care is selfish or not.

6. Interesting excerpt from a piece by Norman Rosenthal M.D., in the Huffington Post about Meditation and Productivity in Business—in this context the author is recommending Meditation as a tool for self-care:
We're not designed to live on adrenaline 
Psychologists have documented variability in alertness and mental acuity across the day. Our personal experience confirms this. We dash for that extra espresso drink or diet soda so as to keep going, or settle our nerves down with a beer or cocktail at the end of the day. Aside from using these exogenous chemicals to regulate our state of mind, when stressed we release endogenous brain neurotransmitters, such as norepinephrine and dopamine, to help keep us sharp.
But these chemical systems have developed through the course of evolution for short-term crises and challenges, not as part of an ongoing lifestyle. We are not geared to "live on adrenaline." In fact, the biggest cause of long-term sick leave, work stress, has been called the "The Black Death of the 21st Century." (emphasis mine)
Article reference:

Monday, December 9, 2013

Stanford Medicine X 2014 ePatient Scholarship Live Event

Medicine X Live Event: 12/10/2013

If you are an ePatient—engaged and active both IRL ("in real life") and online in your journey through healthcare, empowered and advocating for yourself and others, striving to educate yourself and others about your condition, and excited about innovation at the intersection of medicine and technology—you need to be at Stanford Medicine X 2014.

If you want to be involved, whether you've been considering dipping your toes in advocacy or are already a full-fledged ePatient community leader, if you have been mentoring other patients, if you have been blogging about your condition or have written a bestseller, if you are looking to meet and collaborate with like-minded seekers, doers, makers and strivers all working to make healthcare better from the inside out, if you are itching to connect with ALL stakeholders from physicians and researchers to designers, Silicon Valley execs, tech gurus and beyond, then you need to be at Stanford Medicine X 2014.

If you want to know more about the experience—the conference is co-designed by ePatients (imagine that!)—then by all means, join us tomorrow night for our live Google Hangout & Twitter Chat.

Read up on the ePatient Scholarship Program, peruse the cornucopia of MedX 2013-inspired blogging, check out last years Google Hangout, and again, join us tomorrow night!

PS: Many of the ePatients on tomorrow night's event have given Ignite Talks at Medicine X. Check them out here.