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.

Monday, November 11, 2013

QuickPost :: Design And Mental Health

Image from
Another great find at the intersection of Design, Medicine and Technology, via the ever-reliable Co.Design.

Take a look at this piece about the MindBrowser project which uses Design to tackle a common, often devastating and/or fatal, and generally misunderstood and stigmatized illness—Depression.

In the words of the article:
"A clickable online map narrates the thoughts and feelings of a person going through a depressive episode in an attempt to destigmatize a widespread mental illness."

Designer Kim Haagen explains it as follows on the Thoughts Of Depression site:

About the MindBrowser by Kim Haagen. Screenshot from

Haagen demonstrates how the tool works in this video:

Thought of Depression - The Mind Browser from Kim Haagen on Vimeo.
A research on the social effects of depression led to the concept for the Mind Browser. A tool that helps develop emphasis towards the depressed ways of thinking.

Per the Co.Design piece:
"It's still in its prototype stages, existing mainly in video and concept form, but once it’s fully realized, the MindBrowser could be a powerful tool in combatting stigma and ignorance. Haagen has plans to apply the MindBrowser format to all existing mental illnesses."

I am a fan of the "out-of-the-box," curiosity/research-driven and collaborative approach... and, it's always so inspiring when a patient takes on the task of shifting the needle in creative and effective ways. Haagen tells Co.Design about the roots of her project:
“Throughout my life I have had different kinds of experiences with depression,” Haagen tells Co.Design. Out of a personal need to speak openly about the illness, she began to interview depression sufferers and psychologists about their experiences.

Also, I can't help but imagine how extending and building on this approach might work/help if it were to add further participatory components and even evolve into an app/tool that individual patients, psychologists, doctors and caregivers might use.

QuickPost :: Designing Out Medical Error

Herewith, one of the interesting points from a FastCoDesign article about the Designing Out Medical Error Project (DOME):
"(...) the (DOME) project produced insights that should guide future efforts. One is simply encouraging medical professionals and designers to interact. Doing so gives practitioners a chance to see their old equipment "with fresh eyes," says West, and yet such collaborations are rare--despite fruitful partnerships going back to the days of Jeffrey Cooper. "I speak at a lot of medical conferences, and they never even considered that a designer could be involved in this sort of thing," says West. They should, stat." [Emphasis and link placement are mine.]
At least one medical conference embraces the design/medicine collaboration -- Stanford Medicine X (disclosure: I sit on its ePatient Advisory Board). Here's to seeing this rippling out further.

Here's a tweet from the DOME project:

Wednesday, October 30, 2013

Yum Yum For The Brain: Design1o1, Day3

Today's homework became a journey through the treacherous landscape of trial and error (error after error after error!). It ignited my love of a challenge, tested my patience, called on my tenacity, and after many grumblings and crumplings, eventually yielded success.

Crumply Crumplings And Crane.
Success, Basic: I finally managed to transform the square piece of paper into something resembling an Origami crane.

Success, Advanced: I was reminded about the process of learning, and learning how best to learn. I ended up having to use a combination of two separate online Origami resources, a wiki, and a tutorial to actually understand how and where to fold the paper at certain tricky junctures. I kept getting stuck at a certain point with the wiki -- that's where the pile of crumplings happened. After a while, I zoomed out and tried instructions from a different site. Luckily the tutorial provided the key I was missing. Yes, you need to carefully fold the paper... AND you need to go over each fold several times with a ruler to make it super-duper-uber crisp. Otherwise, the paper doesn't respond and you are left with a mess.

Finding that key is so gratifying. I love that moment when precisely at the point where you were so terribly stuck, you now flow through like a river to the sea. In that little moment, at that turning point, larger horizons appear, hope is renewed and optimism soars.

*   *

Feeding At The Trough Of Nature

Then came the photo shoot. Where was I going to put this bird? And this bird is supposed to represent ME? Ok, fun.

I went outside and ended up "Feeding At The Trough Of Nature."

Is this me? Is this not me? Meh. I don't particularly care one way or the other. I'm an overthinker by nature and I am using this course to work on doing the exact opposite.

"Don't think too much, just do! Make a choice and go with it! Quick, quick!" I keep feeling the dizzying, beneficial influence of my ceramic sculpture teacher, Biliana Popova.

*   *

Lastly, the references. References, research, discovery and exploration -- yum yum for the brain! With the addition of the secret sauce Community factor which for me is working mostly via Twitter (as of now, the iversity discussion platform is unfortunately terribly inadequate and cumbersome).

Loved Robert Lang's talk:

Loved Erik Demaine's Computational Origami -- most especially the exquisite circular fold sculptures:

Loved bumping into this recommendation and following up on it (can you spot the other Charles & Ray Eames reference in this post? Hint: It's all the way at the top!):

Finally, loved reading this post by Yusra Mujib, another of my fellow students:

PS: Ummm, what about that 1-hour limit? Yep. Not so much, today! Oh well...!

Tuesday, October 29, 2013

Eye Of The Beholder: Design1o1, Day 2

I approached the task by making a decision about what I consider to be "a good picture" of me. 

There is already a good picture of me out out there online: it's a professional portrait taken by a fantastic photographer

A. No need to reinvent the wheel, and B. I was simply not inspired by the notion of having this assignment be about the most common meaning assigned to the term "a good portrait."

I'm taking #Design1o1 to deliberately explore the world with a different approach from my same-old same-old. With this exercise, I wanted to learn and convey something about myself and have fun while doing so.

I enjoyed the dual aspect of the assignment. It was with less trepidation than I would have had a few years ago that I gave up control of the shot my friend would take after I explained the assignment to him. 

Maybe I cheated by taking my selfie first. But what it allowed me to do was immediately communicate to him the mood and goal I was aiming for. I then left it up to him. In addition, removing the constraint of the "good portrait" freed me from self-consciousness, vanity, and all that annoying drama we are so good at putting ourselves through.

Here is the picture taken by my friend (it includes another friend -- one with four legs); it was a true collaboration:

Here is the selfie:

I played with both pictures to add another layer to the assignment, or maybe rather, as a comment on it.... the kaleidoscope effect and the many facets of ourselves, including those we inherently have and those which represent us and the infinite ways we might be perceived and by whom.....

By the way.... I am feeling very centered today.... can you tell? ;)

Monday, October 28, 2013

Day of Discovery: Design 1o1, Day 1

Indeed, the Design 1o1 MOOC is far from ordinary. The journey kicked off with the first of its signature Video Dispatches:

It concluded with a seemingly whimsical multiple-choice quiz -- complete with right-up-my-alley answer choices such as: "This question annoys me."

A scroll through the introductions on the course's home page yields hellos from a truly global bunch of enthusiastic participants. I saw all continents represented with people hailing from Nepal, Namibia and everything in between.

And..... I am still trying to process the fact that approximately 27 000, 
yes that is  
T W E N T Y  S E V E N   T H O U S A N D  
people have enrolled.

Deep. Breaths! I am relieved I am not one of the organizers -- I get to do the fun/work without having to worry about infrastructure, functionality, or grumpy participants. I'm also curious to see how many students stick with it all the way -- myself included. It's reassuring to me that the organizers have given some thought to human behavior and warned us from the get go to be aware of time management:

This admonition comes with a reference to something I had never heard of: the Quipu, the ancient Inca necklace-and-knots accounting system. I love discovery!

Which brings me to one of the things I am already enjoying about this course: its reference cornucopia, including its very own "Encyclopedia:"

Another discovery I made: the quiz asked how Sid Vicious ended his performance of My Way at the Olympia in Paris -- something I had never seen:

Knowing Paris like I do, that juxtaposition (whether it actually happened or not) of bourgeois culture and ultimate Punk is fun to behold.

If anything, this course is a social experiment in design, as much as it is a course about design, and it's already generated a slew of interactions -- instructor, Stefano Mirti has expressed the wish that above all, this MOOC is creating a community -- including this great stream launched by srinivasan reghuraman:

What does Design mean to you? I don't have a quick answer to that question. I am still processing.

But for me, Design is about making things, making things better, identifying problems, problem solving, ingenuity, imagination, cross-disciplinary collaboration, elegant solutions... 

Design is also about making things FOR a purpose; FOR users/people and so usability is inherent in it.

For many, Design is about style, and yes, style (elegance of form?) is crucial, but -- at least as I think on it right now, style on its own, style for its own sake is not enough.

NOTE: The images on this page are screenshots of today's Design1o1 Brief. If anyone can point me to its web home to link to, please do.

Friday, October 25, 2013

Design 101: Adventure Awaits!

Screenshot from:

I just signed up for my first MOOC, aka Massive Open Online Course. I found it listed here, along with this screenshot which explains what a MOOC actually is.

I've worked in Design for years but have never taken a design course. I'm also obsessed with Innovation and there's nothing quite as thrilling as daring oneself to go on an adventure and try something new. Beginner's Mind is not necessarily an easy or comfortable place to live... but who said life was supposed to be comfortable??

Adventures are thrilling because they test our fears and our willingness to move out of our comfort zones. They are also thrilling because there's nothing like that adrenaline rush of accomplishment once we've done so and find ourselves still breathing.

Given the whole MOOC meme -- no big surprise to find a Pinterest Board dedicated to it -- I scoured the internet and found a course that sounds right up my alley: Design 101 (or Design Basics) on the iversity platform.

I also found a thought-provoking opinion piece about Design and eLearning on Dezeen, and it mentions this particular course:
Stefano Mirti's "Design 101" course, for Iversity via Accademia di Belle Arti in Catania, indicates some of the promise for design education in this medium. Irresistibly Italian in presentation, Design 101 provides challenging briefs of things to make, with Mirti supplying context and inspiration.

After reading about the course, its founder, Stefano Mirti, and viewing its fantastic introductory video, I enrolled today (it starts on Monday October 28th) and so my adventure begins. I can't wait to get started.

Luckily, this team seems to mean serious business and is offering a series of preparatory exercises. I dared myself to complete one today.

Here's the tweet with the exercise:

And here is my submission -- It was a dare and a thrill to complete because I have a huge mental block when it comes to drawing and sketching. But I pushed myself to just get over it and DO IT.

The submissions are posted here. It's interesting to see how different people approach a given exercise.

Wednesday, October 23, 2013

UPDATE re: Quick Post: Seeing RED (I mean, PINK)

Thank you to City of Hope for quoting me in their Breakthroughs Blog

If the link in the tweet above does not work, please try this one.

And, here is a screenshot of the relevant paragraph:

Monday, October 14, 2013

Quick Post: Seeing RED (I mean, PINK)

Begin disclaimer: Yes, this is a rant. End disclaimer.

Begin rant:

Grr! Yes, it's Breast Cancer Awareness Month again, and I have been protecting myself by staying out of the fray as best as possible. But like some of my fellow grumbly sisters out there, all it takes is that one tweet, that one ad, that one poster, that one pinkified thing to set off a rant.

And here it is. In and of itself, perfectly benign, if you'll pardon me the anti-pun:
Now, it's not the seeing of the tweet that provoked my rant -- as a matter of fact, the announcement of the tweetchat activated my interminable curiosity. As a member of the #BCSM community since day one, I was intrigued by the announcement of a chat about breast cancer with a different hashtag. (For the record, I think a more elegant hashtag would have been a better choice -- #breastchat just doesn't do it for me. Yes, I know, it's easy to grumble and criticize, but this is a rant. Remember? I qualified this upfront.)

So, I clicked on the link and found this:

Image from
I don't doubt, given the source -- City of Hope is a highly regarded organization -- that intentions are excellent and information is reliable. But, I have had it up to my nosehairs with all this talk of Breast Cancer Prevention already.

Of course, if anything will help to prevent Breast Cancer, I'm all for it. However, what does all of that prevention really mean and what does it give us? As for me, I ate broccoli as a kid, I've always been healthy, I've gone through a few cycles of gaining and losing some excess weight, I've always been active blah blah blah. And, I still got Breast Cancer three separate times over the course of 19 years.

When I asked one of my cancer specialists about the link between physical fitness and a reduced risk of breast cancer -- telling her that I was at my most fit, with an athlete's resting pulse, before my 2nd diagnosis -- she remarked that perhaps it was my level of fitness that had given me such a long break (11 years) between my first and second diagnoses. So, while it might not have prevented it altogether, it might have bought me some time.

But, is that really prevention?
Image from

When I think of prevention, call me naive, call me an idealist, I think about something that will actually prevent the thing you want to prevent from ever happening.

I am just concerned that this "prevention" is closer to a bill of goods than I would like. A bill of goods that lulls the general population into a false sense of security. "If I follow these guidelines to the T, it means I won't get Breast Cancer, right?" Please, please, correct me if I'm wrong, but I don't believe we're there, or anywhere close to there, yet.

What I want is some real-live, actionable, guaranteed PREVENTION. Some prevention that will actually PREVENT Breast Cancer. That will actually STOP IT FROM HAPPENING. That will actually STOP IT FROM METASTASIZING.

Until then, I'd prefer a more accurate choice of words. Instead of prevention, let's call it like it is:

Things to do to (hopefully) reduce your risk of getting breast cancer due to some (but definitely not all) of its known associated risk factors that might be susceptible to as of yet un-knowable levels of reduction if you do actually do the things we're telling you to do but which might not be. Or something like that. Results Not Guaranteed. No Refunds.

End rant.

IMPORTANT UPDATE: Please see City Of Hope's incredible response to this post.

Wednesday, April 17, 2013

Tamoxifen, Not a Love Story. Part One.

Here is an excerpt from a recent post on the #BCSM website:
Endocrine Therapy Side Effects – Your Input Requested! By DrAttai On April 13, 2013 · 7 Comments

A bit of crowdsourcing help, please! I’m giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting – the title is: “Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying”
Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way – I’m interested in the side effects and remedies only. (...) Thank you all in advance for your help! After the talk, I’ll post the slides.
Here's my input:

I have had three primary Breast Cancers. Each was ER positive.

After my second primary, in 2005, I agreed to go on Tamoxifen, starting about a month after completing radiation. At that time, I still had an active infection in the surgery site (from lumpectomy 6 months prior); I was still healing from the open wound/burn caused by radiation, and I was in very poor shape physically, emotionally and spiritually. Ironically, at diagnosis in March 2005, I was the fittest, leanest, healthiest I had ever been, with an athlete’s resting heart rate, and I have always been a “tough” person with a high tolerance for pain.

So, when I began Tamoxifen, I was very much diminished. Immediately, I got terrible headaches (they went away after a month or so), and yes, I would get “hot” but nothing too extreme. That, I could live with.

Very quickly though, I went from having very little energy to having none whatsoever. My mind became completely and utterly shrouded in clouds of dense fog that every now and again would thin out, but only for a second or two. I began to have recurring nightmares* where I was trying to walk (never mind run!) and could not lift my feet, and when I would try to call for help, if I could find the words, they would come out in extreme slow-motion. I described it as feeling like I was constantly underwater, walking uphill, against a strong current. I have always had a sharp, wicked-fast brain, especially with words and concepts. That all turned to blubber. I would blank out, could not find the words/terms I needed to express myself, and to make matters worse, it constantly felt like I had those words at the tip of my tongue but could not summon them…. So there was an almost constant state of distress, anxiety and dismay. And fear that I would be like this forever. 

Many days, I did not feel safe to drive. Meanwhile, I was busy trying to get my life back together after this second cancer, was searching for work, and living alone with nobody to take care of me. At the time I used to joke that I could certainly carry on like this for 5 years (usual course of treatment with Tamoxifen) if I were independently wealthy and had a staff — a chauffeur, a chef, etc. to take care of everything. But even if I had been living the Downton Abbey lifestyle, it would have been unbearable and I wouldn’t have been able to consider continuing to exist like a zombie.

I toiled along for a year, and finally, after a detailed conversation with my oncologist, she agreed to give me a month off, just to see. Immediately I began to feel (only a tiny bit) better, and we prolonged the drug holiday. As I continued to improve (still only at a snail’s pace) she finally recommended that I stop taking Tamoxifen as it was having such a severe impact on my daily life. 

I was and still am extremely dismayed and angry that Tamoxifen is not viewed by many as a drug whose side effects can be as serious and impactful as those of chemo. I have done chemo, so I know of what I speak. Chemo is brutal, devastating, yes. BUT, for early stage Breast Cancer, adjuvant chemo is not something you have to do for 5 years. I am saying this because when I was done with “treatment” (i.e., radiation) for my second cancer, I had exhausted all my savings and resources and could barely afford my rent and health insurance premium, never mind medical bills. I reached out, for the first time in my life, for financial aid, and was told that Tamoxifen did not qualify as “cancer treatment” by organizations that offered to help cancer patients going through cancer treatment. So, if I had not spent my own money when going through what these organizations termed “treatment” and asked them for help then, maybe I would have had some left over by the time I was dealing with the side effects of Tamoxifen??

If I had been able to continue the prescribed course of Tamoxifen, I wonder if I would have developed a third primary. I will address my third primary in a separate comment.

When Tamoxifen has side effects like these, you don’t look sick, you are not bald, your blood counts are fine…. your suffering is invisible and you are very, very, very easily dismissed. Please shed light on this and help us.

Thank you for reading,

Liza Bernstein

*By the way, the nightmares I described were nightmares, but they also were expressions of what many of my waking hours felt like.

PS: here's the post I wrote about how this #BCSM initiative is a form of collaborative medicine in action.

More Collaborative Medicine In Action, #BCSM Edition, Part Two.

It began with a post I caught on Facebook:

Tweets ensued, including:
And now, on the #BCSM website, a second opportunity for patients to contribute to the advancement of medical knowledge (I wrote about the first one here). Yes, that does sound pretty grandiose! What I mean is this: when you are experiencing the type of side effects a drug like Tamoxifen can induce, you can discuss them with your oncologist, you can vent about them at support groups, you can blog and tweet about them ad nauseam. That's all fine and dandy....

But to be able to give that information to a physician who not only cares deeply, but who is planning to use that information in a presentation she is giving at a medical meeting.... well, that does get you thinking pretty big.

I continue to be excited and inspired by what we can accomplish when we harness technology to facilitate change.

Friday, April 12, 2013

Collaborative Medicine in Action

It began with a tweet, that I RT'd after reading the related post on the #BCSM website.

Others chimed in, including:


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.

Friday, March 8, 2013

Farewell, Beautiful Soul

The lengthy excerpt below from today's New Old Age blog in the New York Times speaks to what one of my dearest friends is experiencing right now.

Around three years ago, her dearest friend (I will call her Beautiful Soul for privacy reasons) was diagnosed with Stage IV Breast Cancer, and began Hospice Care at home at the end of 2012. Beautiful Soul left us two nights ago, and my dear friend is in the throes of that loss.

My friend and Beautiful Soul created a very special world in preparation for Beautiful Soul's passing, and I know for sure that as this blogger says below, there was "a sense of ceremony and intimacy, suffused with honor" when it happened.

View of the Pacific at La Piedra
At La Piedra, by Liza Bernstein
I hope my dear friend, somewhere down the line, after the tsunami of extreme grief has ebbed, flowed, and receded again, will find that sense of peace and acceptance, despite the unbearable pain of loss.

Knowing her, she will. But at what cost?

Again, Advanced Breast Cancer, Metastatic Breast Cancer, Stage IV Breast Cancer -- there is no cure, it is the cancer that kills and takes our loved ones from us. It takes them young, it takes them old. It doesn't discriminate. And yes, we may experience and learn important life lessons and wisdom and growth and so forth when we are there with them side by side.... but I'm feeling selfish. I don't want any more of these life lessons, I am enraged that my dear friend (and all others like her) has to experience this unspeakable suffering of the heart and soul.

I send her and all like her my deepest love and comfort.

May Beautiful Soul rest in peace.

Here's the excerpt:

After Caregiving, Comfort in Having Helped
On the day of her death, Mom’s grandchildren came in, one by one, to bid her farewell. My brother, sister and I held her hand. I had a sense of ceremony and intimacy, suffused with honor. The honor came from acknowledging Mom’s long, hard journey, and from facing things squarely, encountering what it means to be human, in extremity.
A year later, on the anniversary of her death, I stood on a bridge crossing the Chicago River and had an extraordinary sense of time both collapsing and stretching into infinity all at once. It was a warm, sunny day, the water gleamed bright below and I felt Mom with me, amid all the beauty. 
In the end, I was not left with the loss I had dreaded so much. What I felt was a sense of fullness, uncolored by fear. 
I tell you this because during years of struggle, this may not seem possible, this sense of knowing you stood your ground with love and honor, this deep acceptance of all you did and left undone. But it is, and knowing this is one of the insights that followed my years of caregiving, which informs all the work I do here.

Tuesday, February 12, 2013

On The Importance Of Being Disruptive

Excellent quote from ePatient Advocate, Regina Holliday, from her post about her petition to Hallmark to create hospice cards. 

She is being noticed. 

Forbes has picked up the story, and the petition is gaining signatures.

Innovation requires this kind of intelligent courage too.

I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard. 
~Regina Holliday

Monday, February 11, 2013

Mademoiselle X and the Pre-Op

Recently, a young woman I've been mentoring through her Breast Cancer journey -- I'll call her Mademoiselle X -- asked me to help her prepare for her post-double mastectomy revision surgery.

Mademoiselle X's initial double mastectomy surgeries did not leave her with a good result. Thankfully, nothing "went wrong" from a health perspective... she healed very well, there were no infections or complications... but for the fact that the implants she received seemed like they had been intended for someone requesting a drastic (and I mean DRASTIC) and intentionally un-natural looking breast augmentation.

After the usual insanity and extreme distress of the diagnosis, the chemo, the fears of infertility due to said chemo, and the ordeals of her first two surgeries, the last thing Mademoiselle X wanted and needed was to have to revisit any and all of this as a once again vulnerable patient, dependent on surgeons to leave her with results she would have to live with for the rest of her life. But, given the situation, a revision was what she desperately needed.

Before her pre-op, we discussed her fears, needs, wants, expectations. We also brainstormed questions and tactics to ensure she would get the information she needed from the surgeon, all the while getting said surgeon to hear and understand exactly what she did and did not want.

I coached her to talk about precise, specific details, and to be explicit about her needs. This, no matter how polished, professional, educated, strong, or valiant you may be, is no easy task, especially when you are going through this for the nth time, and your new surgeon is... well... a Brilliant Surgeon (i.e., super achiever, technical guru, tending towards uber-human). Hence our coaching sessions.

I am sharing here our exchange of texts immediately following her pre-op with the surgeon:
Mademoiselle X: Doc scared the crap out of me, talking about 6-8 percent rate of infection where he'd have to remove implant altogether and I could have flat chest and droopy skin for 3 months before another surgery with loads of scarring... like the worst of the worst Scar Project pics you've seen. I'm so desperate to be smaller, but now I'm scared.
Me: They always have to tell you the scary side effects and scare the crap out of you. 6-8% infection rate also means 94-92% NON infection rate. You don't smoke, drink abusively, or have diabetes... you are healthy and will have to be scrupulous about wound care etc... which you will be anyway. I don't want you to think I am being dismissive... just trying to give you some perspective. Sorry you have to go there.  
This brought me straight back to my initial visit with my oncologist after my first breast cancer diagnosis. She was recommending chemo for me, but had to give me the list of potential side effects. One of them was LEUKEMIA. What? To kill the cancer inside my body, you are prescribing a drug that could possibly cause another, lethal, cancer? How am I supposed to breathe after hearing that, let alone continue with my life?

The toxic levels of anxiety we experience as cancer patients leave our nerves raw and exposed. It takes time and diligence to heal that frazzled mess, and in the case of Mademoiselle X., the last thing she could have understood rationally in the moment was what the risk of that side effect really, truly was, given her particular circumstances.

I know there's a responsibility to disclose these potential side effects, but we patients need to learn to interpret them and gain some perspective on what they really mean. No easy task when you are in the throes of your cancer journey, but a crucial one nonetheless. This would be a useful tip for caregivers and loved ones too.