Wednesday, March 25, 2015

Death in the Family: A Conversation Catalyst


Last night we held a good friend in our arms as she died.

Our good friend was a mouse named Basil but the process of dying and our being present was no less significant to my children than had Basil been a human friend.

My husband and I were walking swiftly out the door when my daughter first called out, “MOM! MOM, I NEED you!” Since my daughter is not afraid of spiders or any other creepy crawlies, I expected something along the lines of a teenage feminine problem and was surprised to see the mouse in a fetal position in her hand. Instantly I assumed, as had my daughter, that our littlest pet was dead and, as I gently scooped her up, I was a bit startled to find her still warm.

My son and husband joined us quickly and I explained she was still alive but not for long.

Suddenly the errand of the evening was insignificant compared to bearing witness to a family pet’s final moments.  Actually, what I assumed were final moments stretched into lengthy minutes and we stood gathered in my daughter’s room speaking in low, soothing voices.

This is not the first mouse death in our home. A few months ago, I held Basil’s sister Rue as she took her last few breaths. The difference this time involved my husband and children’s participation and an active conversation around end-of-life decisions and consciousness. We spoke clinically of the processes going on (the twitches and erratic breathing were especially disconcerting to both children) and we spoke from the heart about wanting to be with her in her final moments.

Rue had died very quickly in my hands under similar circumstances and my daughter never touched her. She was unnerved and a little afraid. With that memory still fresh, I was thrilled to note that this time my daughter had actually scooped her out of her habitat and that everyone felt comfortable enough to gently stroke her fur.

“Do you think she wants to die?” she asked. “You know like people who are just done and choose to die days before they actually do? Does a mouse think like that?”

“I don’t know,” I said. “I really don't know.

“Do you think she’s conscious?” she asked.

“I don’t think so but, either way, I don’t want her to die alone,” I answered.

If you’ve been a longtime reader of this blog, you’ll know that among other things, helping to demystify death for my children is important to me. The catalyst to remove some of the associated fear and aversion to conversations around end-of-life has been generated in large part by cancer and the multiple diagnoses and death of many friends and family. Ironically, my own turning point with end-of-life came slightly before the onslaught of cancer diagnoses, through the death of my grandmother, just over three years ago.

As we continued to hold and stroke Basil, our conversation continued around what senses remain in those final moments. I spoke softly to Basil and thanked her for her being such a wonderful snuggly pet. And I asked every few minutes, “Do you want to hold her?” My children responded by gently stroking her fur but neither child offered, asked or indicated a desire to hold her.

My son noted the cyanosis quietly, “She is getting very pale.”

Indeed her normally pink feet and nose had developed a greyish hue. “Yes, the oxygen in her blood is very low.” 

As her respiration became more and more erratic, her body would spasm slightly. My own self-doubt played intermittently yet silently through my head, “Is this the right thing to do?” “Does she want to be held?” “Is she in pain?” “Gah! What should I do?” But my outside mannerisms belied any internal ambivalence and I went with what felt comfortable: being there, holding her, talking out loud about what was happening and supporting my family.

Basil’s respirations ceased being visible but I could feel her heart beat for another several seconds before everything stopped. “She’s gone,” I said. “I’m very glad we could be with her.”

A few more tears were shed and then the search for the appropriate burying box began.

The death of a loved one, be they furry or fleshy, is difficult. But the death of loved ones is an inescapable part of life. Thank you Basil, for the two plus years of enjoyment you brought our family in life and the lessons you taught us all in death.





Sunday, March 22, 2015

Authenticity: Walking the Walk


When I speak with new cancer patients, I always remind them to be authentic with their feelings. If you feel like a warrior, let loose the battle cry; if you feel like the victim, sob fiercely into the belly of your cat; if you feel angry, shout it out; if you feel frightened, reach out to the closest warm body for that hug. Whatever the emotion, just allow yourself to feel what you need to feel, when you need to feel it.

And, when I speak with individuals trying to find their way on social media, I always remind them to be authentic in their communication and their representation of themselves.



Yet I realized through a few key interactions with others, I’ve hidden a portion of the real me for what I assumed was the benefit of protecting others feelings – or my perception of their feelings.
On Twitter, I share my thoughts, opinions and feelings as a cancer survivor amongst my thoughts on cycling, gardening, running, etc. On my blog, I write openly about my fears and my conflicting emotions regarding survivorship and my activities pursuant to improving an imperfect healthcare system.

Even Google+ gets an update every time a new blog is posted.

Yet on Facebook, I passively shield others from the cancer-related facet of my life preferring to upload photos of my children and tandem bike rides with my husband. On Facebook, people are only getting half the story.

A new but very dear friend has unwittingly exposed this dichotomy through her own authenticity. Corrie openly posts about successes and challenges in trying to cure cancer and openly calls out the barriers amidst the day-to-day sharing of her family’s escapades. She actively seeks collaboration to cure rare disease and delights with photos of her children making lemonade. 

Her authenticity has made me reflect on the social media separation I have created in my own life.

Rarely do I share my healthcare-related blogposts via Facebook, yet Twitter is the first place I announce a new post. I am incessantly tweet-singing the praises of local, regional, national and even international cancer support and research organizations yet few of these make it to the Facebook platform. And I spend an incredible amount of time linking people and organizations together yet I have avoided making any of these connections via Facebook, lest it unsettle my friends and family. 

Ironically, the individuals linked to my Facebook account are some of my closest friends and family. They are the same ones who cared for my children, brought meals, sent flowers and transformed my front garden during the darker days of my diagnosis and treatment. They are the same ones who, on the six month anniversary of my diagnosis, joined me and my family in the great “Gratitude Party” celebration. And, ironically, they are the same ones who showered me with support as I chose to make a rather abrupt and non-traditional career change.

And yet I have subtly removed these people from a huge portion of my life by omission. So exclusionary are my conversations, many of them don’t even know what my work entails.

There was no malicious intent. Thinking deeply about the path to social duality, I believe I projected a bit of cancer-fatigue on these friends and family. I was tired of cancer talk so I assumed they were as well. Yet, when I created a new career around advocating for patient inclusion and expanding the general healthcare system’s view of the patient experience, I felt a bit of anxiety around sharing. I assumed cancer talk depressed people who weren’t/aren’t forced to think about the intricacies of diagnosis, treatment, recovery and, in large part, mortality, and I honestly didn’t want to bring people down.

In the past week, I realized this omission is actually a disservice to those that I care about and perpetuates the siloing of information I detest so strongly. Information and access silos are the bane of researchers, physicians, caregivers and patients everywhere. Information silos are barriers to the collaborative research that will lead to more effective treatments. Access silos are barriers to critical support and treatment information. Friends and family are not immune to their own healthcare battles and the current collaborations could be useful to them on a very personal basis. Moreover, the people who I am friends with are rife with their own redeeming qualities, many of those qualities helpful in building collaborations. By default, I have been exclusionary and I have underestimated an entire group of amazingness.

I have spent almost two months fostering a #IWishMyDoc/#IWishMyPatient hashtag campaign in partnership with the Flip the Clinic organization. The campaign that strives to bridge “the gap between patient and physician, with health, wellness, and shared understanding at the center.” Yet I’ve kept these efforts mostly sequestered to Twitter. Yesterday, Dr. Iris Thiele Isip Tan published a very personal blogpost on the #IWishMyPatient campaign. At the end of her post, she writes, “I must confess that this was not a comfortable post to write. But thanks for the opportunity Stacey!” I sat dumbfounded at that statement, overwhelmed with gratitude for her efforts to move outside her comfort zone to push the veritable ball forward. And I thought, “I must do the same.”

So while I can apologize in advance for adding a bit more to the data stream, a more appropriate apology would be directed toward those I have passively excluded for fear my healthcare-related posts would be annoying or overwhelming. I will continue to talk the talk and I will continue to walk the walk. And I will work on extending the whole of my authenticity across the whole of the communications space.  

As I tend to say prior to my involvement in any active tweetchat, “Please, please, please join the conversation, read along and learn or simply ignore [the extra information].”




Monday, February 23, 2015

Flipping the Clinic with #IWishMyDoc/#IWishMyPatient

Three weeks ago, we kicked off a simple hashtag campaign to help provide context, build understanding and generate empathy between patient and clinician across the healthcare space.

In the month of February, we have had 257 patients and caregivers participate in the #IWishMyDoc campaign and 163 clinicians share their #IWishMyPatient thoughts. Leveraging the power of social media, these individuals have helped make over 5 MILLION impressions in the Twitter sphere. But most importantly, many of these thoughts have led to honest suggestions and thoughtful conversation.


Patients have offered waiting room and office management suggestions as well, reminders regarding considering the mental and emotional load that comes with many appointments and a wish to be seen as a whole person versus a set of symptoms:


And participating physicians have been vocal about empowering patients to find their voice:


If you have not already shared your thoughts, please join us for the one week left of our #IWishMyDoc / #IWishMyPatient campaign. Consider sending a link to the original blog (below) to your friends and family network to encourage participation amongst health care providers and patients.  


And remember, healthcare doesn’t need to remain an illness model - and EVERYONE is a patient in the context of general wellness. What do YOU wish your doctor said/provided/understood?



Wednesday, February 11, 2015

Being Mortal: Demystifying Death with My Teen


As my children finished their homework at the kitchen table, I quickly reviewed my Twitter feed and immediately began tripping over #BeingMortal hashtags. A quick investigation led me to understand Being Mortal was actually a PBS Frontline presentation with the esteemed Dr. Atul Gawande and I publicly bemoaned not having a television set that I could tune in on.

Almost immediately, I received the following response to my tweet:


I clicked the link and was soon taken in by the words, “Often times what we say, as physicians, is NOT what the patient hears,” from a palliative physician.

My son had already scooted off to shower but my 13 year-old daughter sat across the table from me, within audio earshot but out of view of my laptop screen. Occasionally she glanced toward me and I would describe what was happening on screen. Within 15 minutes, she was standing over my shoulder as together we watched Bill Brooks say, “There has to be a third option.”

I moved us to the couch and she cuddled next to me.

For the remainder of the program, we exchanged commentary on doctor behaviors (lack of eye contact when giving bad news bothers me) and on patient conditions. I mentioned I was sad for the woman who wanted to take her grandchild to Disneyland and that I was really irritated that IV medications were the reason she was told she couldn’t die at home. She knows I am adamant about honoring patient wishes.

My daughter was taken by Jeff Schultz and she commented multiple times on the beauty of his farm.
I was impressed by Jeff’s ability to have the hard conversations and continue to make his wishes clear.

We were both shocked at the swiftness of his death after his last interview with the camera.

And we both agreed that his dying at home, surrounded by beauty with the opportunity to say goodbye to loved ones, was a good way to die.

I was 38 years old before I was able to view death as a natural end to a good life. I held the hand of my grandmother as she made her decision to die

Prior to that moment, and certainly as a teenager, I was afraid of anything related to death. I have a strong desire to help demystify the process for both of my children. Cancer has played a big role in our family’s last few years and those deaths seem to come more swiftly. I do not want my children to view death as a failure, I want them to see and I want them to understand that a good death is only a part of the whole story. Ultimately, it falls back to making the most of the time we have.

So why would I sit and watch a show about death with my young teenager?

I wouldn’t.

This program was not simply about death. It was, as it was aptly titled, about being mortal - on both the patient and the doctor side. And there were many layers to explore. I was happy to see her witness doctors who were unsure and questioning. I want her to know that her care provider is human, fallible and that the empathy and authenticity must run both ways. And I was thrilled to show her several patients who had a voice, who made their wishes known, who had the hard conversations and were therefore able to spend their final days in the best possible way, for them. To raise a generation of health-literate and empowered patients, we must start with the youth.

The program ended and I kissed her head and thanked her for sharing the time and the topic with me.

Unprompted, my daughter reminded me, as she had almost a year ago, that she was not afraid of death, she just had too much still to do

And she skipped off to the shower to get on with life.


My 12 year-old didn’t watch the show, he’s not very comfortable discussing or even hearing about death. I want to respect that and I understand that the death of loved ones and our own family cancer struggles are still too fresh in his young mind. And this education is nothing to force. Everyone has to find their own comfort zone. I’ll be here when he’s ready.




Thursday, January 29, 2015

A Personalized Medicine Conference: From the Patient Perspective


I’ll admit that I was na├»ve last year when I knocked on the virtual door of the Personalized Medicine World Conference (PMWC). At the time, I was just months beyond a breast cancer diagnosis and highly motivated to drive change in the health care paradigm. When I saw the words “Personalized Medicine”, I assumed I’d found the place where patients were finally placed in the center of the circle.

I was quickly informed that “personalized” referred to the science surrounding the genome and that the conference was not patient focused. For a couple of months, I went back and forth with the organizer before suddenly the bent shifted and an entire Patient Track was created.

Ten days after yet another surgery, I attended the two-day PMWC14 conference. And was delighted by the patient-focus in the track led by Cancer Commons. I was asked to share my story and participated actively in providing feedback on products and processes that were shared over the course of the conference. Researchers, physicians and organizations reached out to me post-conference to ask more about how they could improve the patient experience. I felt as if the imperative shift from personalized medicine to PERSONalized medicine was in motion.

A year later I was dismayed to discover there was no patient track for PMWC15. How did patients suddenly fall out of favor? After all, as well all know, without patients, medicine is just a lesson in hypothesis and a purely academic endeavor.

But I attended anyway, determined to ask the right questions to the right people so that the right information can be shared with the right people at the right time in the right way. Right?

And I learned.

FACT: Everybody (and their uncle’s brother’s cousin) sees the correlation between positive clinical outcomes and tailored patient treatment based on genomic indications. BUT: Whole genome sequencing (WGS) and whole exome sequencing (WES) are still not accessible to all. In fact, not even cancer genome sequencing is available to most.

FACT: Technology and the ability to churn through massive amounts of data to find correlations are critical to being able to leverage genomic data (and all clinical data) to the benefit of the patient. BUT: Data itself is not the value. Algorithms that help make sense of the data are vital. And patient-reported-outcomes rarely figure into the mix.

FACT: The healthcare industry sees the value in sharing data across the globe. BUT: Silos still exist. In fact, silos are still the norm.

Brilliant minds and early stage innovations abounded from the patient-facing presentation by Martin Naley of pre-launch CureForward to the backend drug discovery and longevity research by Most Promising Company award winner Alex Zhavoronkov from In SilicoMedicine.

And then there were the luminaries. Hearing from CraigVenter – one of the first to sequence the human genome; chatting with GeorgeChurch – a founder of the Human Genome Project about how to free the data; and listening to Kim Popovits from Genomic Health – a company I am forever indebted to for the creation of the OncotypeDX test that helped me back up my refusal for chemotherapy with science; were absolute highlights.

After three days of presentations, panels and coffee line conversations I am amazed by the scientific progress yet quite frustrated by the lack of clear execution plans that make these innovations accessible to all physicians and ultimately all patients.

Oddly, the best news is these brilliant minds seem to share my frustration. This is the best news not simply because frustration loves company but because they are actively trying to rectify a few things.

Physician Rusty Hofmann shared a very personal story around the criticality of getting right information at the right time especially around non-standard situations and created Grand Rounds Health in order to help connect patients to specialists.

During the Promising New Companies presentations, John Adler CEO of Cureus shared his company’s mission of an open source medical journal that breaks down information silos by removing barriers to publication.

And, in what was one of the more patient-focused presentations, Brent Vaughan CEO of Cognoa, shared his company’s model of putting a diagnostic tool directly in the hands of parents in order to evaluate developmental delay potential and accelerate early intervention.

The environment was one of collaboration and sharing and the challenge will be continuing the collaboration after everyone has returned to their day job, their area of focus and, sadly, their silo.

From a learning standpoint, the conference was fantastic. 

From a patient perspective, I feel that exactly one year later, the biggest innovation is STILL yet to be operationalized: putting PERSON front and center in PERSONALized medicine – not simply in word but in practice.



Monday, January 12, 2015

How Are You? A Simply Complicated Question


Answering the question, “How are you doing?” should be a simple exercise.

"Fine." 
"Great!" 
"Amazing!"

Yet my answer ultimately depends on who is asking the question and how they’re asking the question.

A casual “How are you?” by someone who has not been intimately involved in the health drama of the past eighteen months, receives an unrestrained and unapologetic, “I’m fantastic.” Because, when I get right down to it, I am feeling relatively fantastic:

  • I am cancer free and I have resumed most of the activities that were put on hold or restricted while I recovered from a multitude of surgeries.
  • I am relatively breast symmetrical in clothing and, despite the scars, no longer feel as if I’m walking around sans body parts.
  • I no longer assume every ache and/or pain is a recurrence of the cancer that caused an upheaval of my life in the first place.
  • I resigned from my comfortable corporate job, parlayed my professional skills and personal passion toward transforming the healthcare experience and began empowering patients and caregivers through collaborative education and engagement.   

Did I mention I was CANCER FREE?!?

So, when I say, “FANTASTIC” I really, really mean it.

But when a dear friend and I catch up for hours and I am then asked the infamous, “How are you?” question, I pause. They really want to know.
And when a fellow cancer survivor asks the“How are you?” question, I pause again. They really want to know AND [insert my best Jack Nicholson impression here] they can handle the truth.

So how am I?

On a physical level, I am doing well.
Very well according to my surgeons and physicians but I am still plagued by pain and lack of muscular ability that can only be rectified by another surgery – one that I am absolutely not willing to schedule right now. I am allergic to Tamoxifen (the anti-hormonal drug that is supposed to keep cancer from returning) but the allergic reaction is preferable to cancer recurrence and any alternative treatments, so I take antihistamines regularly to stop erratic hives and swelling.

On an emotional level, I am doing well.
Very well according to anyone who hasn’t had cancer. I’ve returned to all the regular activities of a normal life. From the outside I resemble a no-name-taking, cancer-ass-kicking breast cancer survivor and thriver. But on the inside, I’m just me and there are a multitude of convoluted layers to the comfort and security I portray.

In other words, it’s complicated.

Artwork courtesy of my daughter

While I no longer assume EVERY ache and/or pain is a recurrence of the cancer that caused an upheaval of my life in the first place – the thought still crosses my mind more than 50% of the time.
While I’ve gotten the majority of anti-hormonal treatment side effects under control, I struggle wildly with others.

While I’m comfortable with my decision to undergo breast reconstruction, the realities have been startlingly different than the one-and-done type surgery I expected:  I rub on temporary nipple tattoos every few days and continue to try and regain the ability to do a full push-up.

While I no longer fear the abstract concept of death. I am still absolutely terrified every time I start doing the 5-year, 10-year survival rate math.

It’s complicated.

Perhaps a better answer to the “How are you?” question is: Grateful.

I am extremely grateful. For my husband. For my children. For my family and friends. For a wonderfully supportive and energizing community. For successful treatment. For the amazing people I’ve met along this journey. For opportunities to give back and opportunities to support others.

I am grateful for my life and all that it contains - including the complexity.


Monday, December 15, 2014

Health Literate and Patient-Empowered Youth: How do we support the next generation?


When I received the “Your Test Results are Now Available” email, my piqued curiosity soon turned to unbridled frustration. Complying with the email’s simple instructions, I clicked on the link to view my 13-year old daughter’s recent lab results but was met with the following message, “You do not have access to view this information.”

As is it turns out, while I am still able to schedule appointments and pay copays for my young teen, my daughter must actually provide her explicit permission for me to view her health records and test results.

In a crisis situation, this brick wall of confidentiality would have been mind-numbingly irritating. However, in this case, after an initial frustration subsided, the roadblock gave me pause.

Since her toddler years we’ve been discussing healthy habits.
Whether it was a visit for a well-child check-up or for an injury or illness, I have always encouraged both of my children to answer physicians’ questions directly (rather than my answering for them).  
And, at the end of every visit, I always prompt, “Do YOU have any more questions for the doctor?”

But I’d always heard those questions and I’d always heard those answers.

Now my daughter was of an age where she could and should be able to question medical professionals on her own. 

And I understand that, while my husband and I have raised our children with open communication on tough issues, there will no doubt be conversations she would rather have with her physician and not her mother. Realizing that she would one day need to navigate the healthcare system solo, I began to question whether or not I had raised her to be a health-literate and empowered patient?

As parents and as educators, we can obviously lead by example on the health responsibility front but some honest to goodness conversation never hurts.
Please join me on Twitter on December 18, 2014 at 9 a.m. PST for #KareoChat where we will discuss the nuances of how to raise our next generation to be knowledgeable and empowered healthcare consumers and generally health literate.

  •  At what age/situation(s) should children be involved in conversations regarding their care? Checkups? Flu shots? Immunizations?
  •  How can we involve children in decisions regarding their health and medical care at an age appropriate level?
  • Does technology play a part in educating today’s youth to be empowered patients & healthcare consumers? How?
  • What else can parents do to raise educated and empowered healthcare consumers and patients?