Thursday, February 8, 2018

Sometimes It’s Just Sadness

My grandfather died yesterday morning.

Bumpy was 92. Almost 92 ½. He lived a “good life.” He was loved by many.

He was loved by me.

I’m used to raging against the premature death of friends from the monster that is cancer but now I sit here simultaneously sad and yet acutely aware of, and incredibly grateful for, the fact my grandfather had the opportunity many are never afforded – time. 
I am grateful he had 92 years on this planet.
He had TIME to find a life partner. He had TIME to have children. He had TIME to see his grandchildren grow and even TIME to see his great-grandchildren grow. He had TIME for adventure. He had TIME for travel. He had TIME for hobbies.

And, at the end, he felt he had too much time. 

He was ready to go. He had more time than Grammy. He had more time than his friends. He had more time than either his body or his mind could manage.

With advancing dementia and retreating physical ability, he was frustrated and, at times, sad.
Having visited with him in December, I am aware that he had absolutely no desire to reach 93.
In other words, I know that Bumpy lived a long life and died a peaceful, natural death but I am still feeling a loss.

And a sadness.

This may seem like a no-brainer to many people, “Duh, your grandfather just died. Of COURSE you feel sad.” But my brain is telling me I need to stay in the “grateful for a long life space”. My brain is reminding me that everything and everyone dies. 

My brain is actually kicking me under the table hissing, “You are being selfish; his quality of life was poor and he was suffering.” Granted, the brain talk is having some effect since my sadness is not the devastation I feel when a young mother dies of cancer or the devastation I feel when cancer kills another friend before she can celebrate her 40th birthday, but it remains a pervasive sadness nonetheless.

Normally, when a friend dies, I just mull through my emotions until they channel me toward action. I would process my grief by typing, exercising, intellectualizing and allowing myself a maximum of 15 minutes of crying the shower.  I would think about the support I need/want/deserve but I would refrain from reaching out to avoid burdening others with my sorrow until I was strong enough to hold theirs.  

In this case, I began to belittle my own grief by reminding myself “this isn’t about you, Stace” and reminding myself to be grateful for the nine plus decades of time he had on this planet.

And then I did something wildly different.

I actually told people that my grandfather died.

I told people that I was sad.

I reached out to a handful of people that I knew wouldn’t freak out with niceties or try and blow perfume up my arse but instead would offer just the head nod, the warm embrace, the validation and the grounding that I felt I needed.

(My gratitude to you circle of peeps is immense. Truly.)

This time I shared my grief by reaching out. Instead of worrying about the burden my tears placed on other people, I allowed myself to be vulnerable, even needy. This new approach meant hours of fielding phone calls and sharing grief and gratitude with friends and family.

Sometime around noon I realized I was actually navigating my grief rather than pretending it’s not on my roadmap. And I’m crowdsourcing my support.

And yet. Something was stuck. Something felt amiss.

At the end of the afternoon, I was grateful but still sad.

And confused. 

I felt I had already recognized my emotions but still felt that stuck feeling. 

I felt at a loss for what to do next.

And then while sharing some of my fonder New England memories with a sage co-worker, I felt that flood of emotion again, “I just feel sad,” I said.

His reply was soft and his eyes were filled with compassion. “Well then just sit with that,” he suggested.

I crooked my mouth (and probably my eyes and head) thinking, “Hey, that’s what I say to other people. How are you using my own words on me? And, oh by the way, I HAVE been sitting with it. For like eight hours.”

Instead I said, in all honesty, “But I’m used to this sadness triggering something else. Triggering something for me to do. I’m not used to staying in the sadness emotion. I'm used to channeling my sadness into action.”

Instantly I recognized that the premature death of friends has been a driving force in what I choose to do day-to-day with my advocacy work. Advocacy work wrecks me and fuels me - mostly at the same time.

But Bumpy’s death? The loss of my last living grandparent? The loss of a man who regularly had a smile on his face, a witty comment on his tongue and could make just about anything with a jigsaw, hammer and nails? The loss of a man who for many years, I thought was the tallest man on Earth? The loss of a man whose mantra (with a wife and four daughters) was “Yes Dear.”? The peaceful timely death of my grandfather who, by his own admission, had enough TIME on the planet? 

Bumpy’s death leaves an enormous gap, feels like a tremendous loss and catalyzes an enormous wave of memories but there no rage. No anger. No motivation.  

“There are no stages!” I thought to myself.

Typically I feel myself going through all the seven stages of grief. Quite frankly, on an average day, I feel like I’m living in all seven stages simultaneously. And then I move onto the action part of my personal grief roadmap.

But for me, when a good man dies a good death at an advanced age, there is really no room for shock or denial. When your 92 year old grandfather has a DNR in place and his quality of life is being reduced by the limitations of his body and dementia, there is simply no need for bargaining or anger when he peacefully takes his last breath. There is only room for fond memories, tremendous gratitude and sadness that seems to want to hang around for awhile.


My grandfather died yesterday morning.

Bumpy was 92. Almost 92 ½. He lived a “good life.” He was loved by many.

He was loved by me.

I am grateful. But I’m still sad.

And now I’m gonna sit with that for a bit.

Tuesday, January 16, 2018

Full Circle in Five Years

I was gluing green ‘fish scales’ onto a long black felt singlet when the phone rang on January 16, 2013.

A cell phone call from my mom, at nearly 9pm was unlikely to be good news but I made no real assumptions.

“I have breast cancer,” she said.

There were no auditory tears and there was no catch in her voice. She was matter-of-fact in her sharing of this information. But it hit me like a ton of bricks.

Within a week I would request a leave of absence from my job in Silicon Valley. Over the next few weeks, I would investigate breast cancer diagnoses, treatments and prognoses online. I would find #bcsm and #lcsm on Twitter. I would learn about TDM staging and the difference between a lumpectomy and a mastectomy. I would read about BRCA mutations and check out books written by previvors.

Not even a month after my mom’s diagnosis, I would fly to Texas to visit with her surgeon at the lumpectomy post-op appointment and learn first hand about the devastation in hearing the words, “We didn’t get clean margins.”

And then her chemo began, and I made another trip to Texas for the obligatory shave the head event (and dye my hair with a pink streak).

Mere weeks later I would receive my own cancer diagnosis.

The trajectory from that date five years ago to today has been dizzying and surreal. I knew from the very first day after my own diagnosis that something good had to come out of the shitstorm that is a mother-daughter diagnosis. And yet I don’t really believe things “happen for a reason.”

Instead I believe “things happening creates a reason.”

I never returned to my job.

Instead I accidently created a new one.

I began consulting quite by accident when someone, after a lengthy conversation regarding gaps in the healthcare system morphed into my ideas around building scalable, repeatable models of patient engagement. And then he asked me what my hourly rate was.

In the years since, I have become a vocal voice for health education, true shared decision making and patient engagement across the cancer continuum. I have elbowed my way into medical conferences to learn the latest in research, treatments and outcomes. I’ve brought the reality of survivorship to those in digital health and diagnostic testing. I’ve advocated for a transformation to a proactive, wellness-based healthcare system from our reactive, illness-based system. I have shared my experiences far and wide - sometimes as the token patient on a stage filled with providers and sometimes as a voice representing a whole community. I’ve spent time on Capitol Hill advocating for policies that support the short and long term needs unique to people with a cancer diagnosis. I’ve connected people to knowledge and people to organizations and amazing people to amazing people. And, most importantly, I’ve met some of the most amazing, brilliant and driven advocates that I’m now proud to call my friends.

And today, exactly five years to the day after I received that phone call, I am joining a mission-based start-up company intent on changing the dynamic for cancer patients and their community of caregivers via a combination of empathy and expertise.

I suppose it’s not accurate to say that “I’ve come full circle” since, in all honesty, the circle I’d become accustomed to legitimately blew apart on that day five years ago.

But I do feel circle-like today. A single devastating phone call was not the end but rather the beginning. Today I feel whole. I feel complete. And, most of all, I feel deeply grateful.

Monday, October 30, 2017

Please Don’t Look Away for Goodbye

While birth and death are two things that unite every single being on this planet, our society tends to celebrate one and fear the other regardless of its inevitability.

My friend Ellen died on October 4th. Metastatic ovarian cancer killed her. Unlike many of my other “cancer friends” she is someone I was friends with BEFORE cancer was diagnosed in either of us.

She called me when she found out in 2015.

We shared all the appropriate swear words. I answered as many of her questions as I could and connected her with individuals and organizations that could help us find answers for the rest. I gave her head covers and peppered her with details about the clinical trials she was interested in learning more about. I met her oncologist to help ask some of the questions she was concerned she wouldn’t remember and I sat with her during one particularly frustrating chemo treatment. But I didn’t even begin to imagine the most valuable gift I would give her, and she would give me, would be our final goodbye.

She rocked surgery and chemo but knew something was off about four months after her treatment ended. A scan six months later revealed a recurrence. And that recurrence was soon metastases. And then we began searching for trials in earnest.

We saw each other only occasionally but we texted each other often.

She was a force to be reckoned with on so many fronts and her approach to putting cancer in its place was no different.

As treatment after treatment failed, we started to talk about her hopes, her fears and how to get the people she loved most to address those with her. She didn’t want to die but she sure as heck had ideas about how she wanted to go.

After some particularly debilitating side effects, she looked forward to finding the ever elusive next potential treatment after October 1st when she had recovered from a cancer-related surgical procedure. But cancer is a wily beast and a number of complications put her in the hospital and on a ventilator just days before that appointment could happen.

While I expected she would not respond, I wanted her to know she was on my mind so I continued to text her in the ICU. And one day, she responded.

I cackled aloud receiving her text, imagining her slyly sneaking her phone and trying to text around the ventilator I knew she was still not happy about being attached to, and I responded that I'd love to see her if she had the energy. 

I am always cautious about inserting myself into situations where I may be more hurtful than helpful. When someone’s time on planet is so limited, I want to respect there is a priority order to energy and time spent with others.

But, after a few days and a message from her husband that she was moved off the ventilator and breathing on her own, I stormed the hospital.

I found her in the courtyard with family. She was unable to speak (not aphasic, just throat irritation from being intubated) and visually aged.

But she was lucid. And she smiled. I’ll never know whether the tears were happy or sad but I imagine they were a little bit of both – much as my sobs were on the way home.

I was able to tell her I loved her. I was able to tell her I was proud of her. I was able to tell her a short story about how my children were absolutely ready to look out for her son.

And I was able to tell her goodbye.

There were no illusions; that 90 minute visit would be the last time I would see her. She was afraid I would leave and so I stayed until we had shared our words and hand signs and her eyes began to close. That is a powerful moment - the extent to which I am unable to convey in words. Minutes of no words, just eye contact. Just facial expressions. Just being with someone and assuring them you remember all the things from all the conversations. Promising that you will continue to advocate on their behalf. 

Just seeing, feeling, holding space for and with an amazing energy and touching a soul for the final time.

I walked away with tears but so full of gratitude for the opportunity to say ‘all the things’.

I texted her the next day, well aware she would likely never see the text.
But she did. And she sent me one in return.

An advocate until the absolute end.*

She died fewer than four hours later.

I am grateful beyond words to have been there until the end. So grateful for the chance to say goodbye.

So please, never turn away. Bear witness to life. While that shell of a body may not be the body you remember, that person you love is inside. Be with them until the end and that time will be a gift for you both.

*I have convinced myself, and no one can convince me otherwise, her words are “You get it.” And with those words and that image, she’s reminding me to continue to speak the realities of ovarian cancer to catalyze more efforts around improved screening and treatments.

Thursday, September 28, 2017

Even Superwoman Needs to Feel all the Feels

Today actress Julia Louis-Dreyfus announced that she has been diagnosed with breast cancer.

As a woman just over four years out from my own diagnosis day, I am filled with only empathy, love and light for Ms. Louis-Dreyfus. I don’t know her or her work (yes, I am one of perhaps four people on the planet that has not seen an episode of Seinfeld) but I know she has just joined a community that she never wanted to join and therefore only partially understands and may not even know exists. She is likely in that whirlwind time where everyone is trying to figure out up from down.

Cancer is sneaky bastard and all-consuming in that way.

I respect and applaud her openness with going public with her diagnosis. With one tweet she educated thousands, if not more on a single stark reality of breast cancer – it affects one in every eight women.

Sharing your story to educate others is a powerful too and being vulnerable to the world with your private reality is well… a vulnerable kinda place. I’ll leave my gratitude here for her and for all of those that lend their voices in an attempt change the cancer narrative.

As one would expect, messages of hope & strength permeated the tweets aimed at or in support of Ms. Louis-Dreyfus (what is WITH my formality today?!?! Julia, I’m calling her Julia) but one tweet caught me in particular.

And so my fingers typed what was in my heart and mind.

Cancer sucks. We all have choices on how we walk, run, dance, roll through the days of diagnostic testing to determine and begin a treatment plan. There is no “right way” to do cancer. And any way is hardwork. As someone who grabbed onto the cancer arse-kicker personality, I also know that maintaining that front can be challenging. Dealing with your own fear, managing the fear of others around you and trying desperately to ‘win’ is exhausting.

Balancing work, family, friends and personal sanity through life in general is hard. Really hard. Balancing all that in addition to facing your own mortality can, some days, feel like an exercise in existential Tiddlywinks.

Four years ago I fed off of positivity. And yet I had, and still have, those days. On those days, especially after all of the well-meaning but pressure-filled “You’ve got this girl” messages, it is hard to show and share your fear. And some days those messages feel impossible to live up to.

To put it bluntly, cancer is a mindf*!k.

Some days you feel like a cancer patient, other days you feel like a rock star. Some days you do feel like you’ve ‘got this’ and other days ‘this’ absolutely and unequivocally has you.

In my opinion, the absolute, without-a-doubt best ever support you can provide anyone going through a serious illness is to allow them to feel all the feels. Allow them to share their desperation with you. It can be hard to listen to. It can be hard not to try and make yourself feel better by blowing verbal perfume up their ass.

But you don’t have to have the words. You just have to have the space. You, as a supporter, need to sit with your own uncomfortability sometimes. Just listen. And then, when the time comes tell me what you know I need to hear - that you heard me, that you listened.

Tell me you’re proud of me. Ask me what I hope for. Ask me what I’m afraid of. Ask me what I think I need – and be fully prepared for me to have no flipping idea.

Love, light and glittery unicorn flatulence is awesome. But all of us need those souls in our lives that can suspend their own fears and anxiety to just listen, to just sit, to just validate fears, anger, confusion and fatigue. Can you be that person to someone else?

I sure hope so because even Superwomen wants and needs to be seen, heard and held.

Sunday, August 27, 2017

I Quit.

For the past few months, my inside voice has been saying, “I can’t even.” The decline and death of handfuls of friends to cancer and the sad and infuriating realities of current events in our country and beyond have made me want to (in the words of my children) “rage quit.”

But I don’t quit things. 
Quitting is for, well, quitters. 
And I’m not a quitter. 
Quitting is bad.

Except when it’s the very best thing to do.

Yesterday my husband and I took the tandem out for what was to be another stupid human trick. Together and separately, we’ve been engaging in athletic stupid human tricks for decades. Our recent flavor of fun is the double century circuit on our tandem. We rode our first two years ago and I became hooked.  

The course of the Carmel Valley Double Century was intended to leave out of Carmel, ride down the picturesque coast to Big Sur, cut in up the famed Naciemento Road (which we’ve descended and ascended before in fine yard sale style) and then ride back into Carmel via the windy and hot Central Valley.

Last year the inaugural ride course was rerouted due to active fires and our views of the ocean were severely limited. This year, due to excessive and epic winter rainfall, a collection of mudslides and ultimately the destruction of the bridge at Big Sur, required another reroute. Instead of seeing the ocean, we were to leave Carmel Valley, ride through King City, ride up to Hesperia Hall and  then turn around an come home. Not picturesque. Not even pretty. But the organizers are such fabulously fun and supportive people, we wanted to support the ride.

On the way south Friday evening, Brandon said, “We can do whatever you want this weekend. We don’t have to do this ride.”

Some people may have heard, “Hey hon, I know you’ve been fighting a cold and have had an incredibly challenging few days with me traveling and about to leave on another trip so, if you want to bag this and have some fun instead of digging through a hot double, I’m totally game.”

What I heard:
  • “I know you have a cold, so you probably can’t hang.”
  • “It’s going to be really hot, so you probably can’t hang.”
  • “We haven’t spent enough time on the bike, so you probably can’t hang.”

Evidently, I am a 44 year old woman with the enormous yet fragile ego of a teenage boy. And, when I feel challenged, I do the obvious, I double down.  

We rolled out of the hotel at 4am, rode to the start off of Carmel Valley road and began our journey. Beginning in the dark is always a little disconcerting but the coolness in comparison to the 100+ degree temperatures we were anticipating was welcome. Pedaling in the dark with a sky full of stars and packs of coyotes was awesome, if slightly ominous at one point. 

Rolling out at 4:10am - enjoying a chilly start

A new day has dawned!

Our first fifty miles went off without a hitch, seventy was easy but I was definitely suffering some anxiety around Brandon’s constant reminder regarding temperatures exceeding 110 degrees and I had no positivity with which to combat his concerns. I tossed a couple of “At least we’re together” comments out but his response was, “We could have been together somewhere else.”


Somewhere after King City we entered the warm, exposed area that would have us climb to Hesperia Hall. Road temps rose quickly from a comfortable 75 to a less comfortable 90. At the Lockwood stop at mile 90, I opted to break into the ice socks for the big climb. At one point, his Garmin showed a 105 road temp and we took a shade break before we summited. Even with the break, we made great time and pulled into lunch at Hesperia Hall before the food had arrived. Our goal was to ‘cool down’ so we spent awhile sitting before realizing that if the ambient temperature was 100 degrees, cooling off was likely not going to happen.

Ice Socks!

So we headed back down the hill with fully loaded ice socks. We’d stopped speaking with each other, just pedaling and going to our separate mind spaces.

We pulled into the King City rest stop at mile 134. We’d made it through the heat but neither one of us was having fun. The obvious thing about the tandem: it takes two. Usually this works to our advantage. My biggest struggle tends to be early in the ride (mile 60) when the 200 goal feels so far away. Brandon is incredibly strong here both mentally and physically. He wanes somewhere between 80 and 120 and I’m all too happy and capable of picking up the “This is Fun and We Can Totally Do It” torch. At mile 180 I am all about “getting off the effing bike” and he says amusing things like, “Just sit in honey, I’ve got this.” 

But on this day, at mile 134, no one was happy. And I didn’t have the inner fortitude to do a damn thing about it. Brandon made noise about how he wanted to throw in the towel at the first rest stop when he heard the revised 118 degree forecast. And so I imagined that was it, we were giving up. We sat for ½ hour but we got back on the bike because it’s rather challenging to SAG out a tandem. No one was thinking straight and no one was happy so we headed out pedaling together but feeling totally separate into the headwind.

At mile 140, we pulled off into a broccoli field for a stretch and I said, “This sucks.” For hours it was apparent that Brandon was not interested in being on the bike. On top of the regular, rolled down a hill feeling I’d normally have at mile 140, I felt guilty for making him endure something neither one of us was really into.

And so back to that car ride.

When Brandon said, “We can do whatever you want this weekend. We don’t have to do this ride.”
He MEANT, “I don’t really want to do this ride. Neither one of us likes heat and the course doesn’t seem very pretty. Why don’t we ride down the coast instead.”

Yep, married for almost 18 years and sometimes we still need a translator because we don't always say what we mean.

When the tears came, they surprised me. This was not the hardest thing that I’ve done by a long shot. Only after a few minutes did I realize the source of my sadness. I said a couple of years ago I felt that together Brandon and I could do anything. I said it in connection with the tandem but meant it as an allegory for life. And now, this ride was an ‘anything’ and we were not doing it together. We were on the same bike but not together. And it was apparent that headwinds, hill climbs and residual Central Valley heat was not going to bring us together.

I know my role when he’s on the bike and I’m the SAG. I validate his fears and miserableness, gauge whether or not permanent damage is possible, and then talk his ass back on the bike. It’s different when you’re both on the bike.

I didn’t desperately want to finish, I desperately wanted to feel part of a team. Our team.

“Honey, we do doubles for fun. This isn’t fun,” he said.

And, just like that, we turned around, now with the wind at our backs and headed back to the King City stop. A few miles later, before we reached the stop, we found a SAG vehicle on the side of the road and asked if his truck could cart our tandem. Ironically he wasn’t course support, but supporting his wife who was finishing her 50th double. And, more than ironically, he actually had a tandem rack.
These things felt like the universe letting me know that the decision to bail was the right decision.
Jim West took us to mile 173 and dropped us off near the top of the hill. We rode into the final rest stop, explained that we’d gotten a 30 mile lift and would ride the remaining 30 miles back to the start/finish. Again, no looks of condemnation. No “oh I’m so sorry” from this husband wife crew. 

Apparently $hit happens and no one is judging except my own little juvenille psyche.

We rode strong, in the top 20 all the way until we bailed. Could we have finished? Um, yes. Of course we could have. But on a tandem it takes two and riding across a finish line isn’t the same as finishing together.

All in, we rode 175 miles yesterday and, if lives had depended on it, or if it had been critically important to either one of us to finish, we could have finished 203. The reality, in the dawn of a new day, is we didn’t want to finish – we wanted to be done. And, most importantly, we weren’t riding together. So we quit. And then we rode another 30 miles, waved to the finish line and continued riding to the hotel. We racked the bike and headed to dinner.

I still believe together we can do anything but, for me, this thought is idealistic beyond the bike. It encompasses the hard times of life, not just the world of double centuries. 

So we quit yesterday – but we quit together.

Tuesday, July 25, 2017

Radiology & Patient-Centricity

Patient-centricity in healthcare has become a buzz word. But what does it really mean?

Patients, caregivers, advocates, health practitioners and providers alike seem to agree that the term references designing a system or service around the needs of the patient. Specifics of what makes something “patient-centric” may vary by service or system but all models and flavors of patient centricity seem to favor stronger communication around patient goals and needs.

So, what happens when patient and practitioner never meet?

At the end of May, I was prescribed a chest MRI to check the status of my now 3-year old breast reconstruction silicone implants. Evidently this is protocol (FDA recommendation) to check for silent rupture, so I made my scan appointment, showed up on time and had my scan. My summer travel schedule was intense and, because I had no immediate concerns about my implants, I assumed results would flow in whenever they were available.

Four weeks later I was still waiting for results.

In my patient portal, I could see that my provider was on vacation so an email seemed like wasted effort. I called the radiology office (not on the campus of my other providers) and no one seemed to know who had my results. I had no ability to contact my radiologist via my portal or even determine who “my” radiologist was. Eight weeks later, I finally emailed my plastic surgeon explaining that I was frustrated and that all I was looking for was a YAY or NAY on my scan. He responded very apologetically with something to the effect of “I thought you’d get an automated message through the system.”

Fair enough, he thought I would be informed by someone else or some other process.

So let’s just assume for a moment that had happened.

I would have received an email with something akin to “Congratulations, your MRI was negative.”

But what exactly DOES a “negative” result mean? In this case, it meant no evidence of rupture.

But what if I had questions?

As it so happened, I did have questions. “What is the status of and size of the seroma in the pocket of my left implant?” I asked via email to my plastic surgeon.  

Dr. H is a fabulous guy but, as he succinctly stated in his response back to me, imaging is not his forte. “A seroma was not mentioned in the report by the radiologist. Do you feel that the seroma is still there?”


Through this experience, I am realizing the numerous additional challenges radiology has in designing with patient needs in mind and wondering how we might improve the overall patient experience by making stronger connections.

Please join me and fellow patient advocate Andrea Borondy-Kitts on Twitter to discuss “What does patient-centered medicine in radiology mean to you?” during the #JACR tweetchat Thursday, July 27th at 9amPT/12noonET.

For additional background on this topic, please read Andrea's June 2017 JACR blog post Patient Engagement One Radiologist at a Time.

Monday, July 17, 2017

“What Are You Really Doing?”

After four years in the social media cancer community, I finally felt the sting of an antagonistic, non-productive comment. But, as with most things social, it certainly got me thinking.

Last week, along with 40 other breast cancer advocates, I attended a training in San Diego to learn about cell biology; mechanisms of metastases; immunology and immunotherapy; systematic review and meta-analysis; policy advocacy and much, much more. We now make up the ProjectLEAD Class of 2017 and will each take our learnings back to our respective communities to further enhance and accelerate our advocacy work.

When I posted a photo of this incredible group, a friend, a staunch advocate for metastatic research and an incredible human being asked me publicly via Facebook comments to make sure the needs of the metastatic community are added to the conversation.

I expected this request.

Metastatic breast cancer continues to kill ~110 women each day and yet receives minimal funding from key sources.  I assured her that, “My goal every single day is to find a way to stop premature death from all cancers and to preserve the highest quality of life along the way.”

What I did not expect was a comment to my reply from another individual, “How! What are you really doing?” This and a couple other comments (that have since been deleted by the commenter) had me feeling a bit defensive.

Okay, REALLY defensive.

But it did get me thinking. What in the heck DO I actually do?

I realized the question was likely rhetorical but felt that I should still be able to answer the nuts and bolts of my day to day.

So I did what I typically do in times of mental and emotional turmoil, I brewed and extra pot of coffee, gave it some thought and then went to the gym to shed the frustration and find my words.

Rather than list out the research projects I’m collaborating with and how they play a role in either improving quality of life or improving therapies; or share the roles I play in defining and evolving patient services; or even explain the new realm of health policy advocacy I’ve been lending my voice to; I thought I’d share the basics.

So THIS is what I have been doing for the past few years and this is what I do EVERY. SINGLE. DAY.:

I share. I share my story to help demystify the realities of receiving, understanding and dealing with a cancer diagnosis. Some shares are more challenging that others but I share the clinical and emotional details of my treatment and survivorship in the hopes that, as knowledge breeds understanding and empathy, we can collectively transform the system to meet the unmet or unspoken clinical and holistic needs of the over 15M cancer survivors in the United States. And then I freely share my knowledge, my resources and my connections.

I listen. I listen to other patients, caregivers, family members, healthcare providers, healthcare innovators and health policy makers. I listen to learn. I listen so others might feel seen, heard and held. I listen to understand the care abouts of each audience so that I can help find our common threads and stitch together bridges that can help us cross our divides.

I speak up. As I learned from an incredible advocate at the 2015 PCORI Annual Meeting, I am fortunate to have keys. I have a house key – which means I have shelter. I have a car key – which means I have transportation. I have an office key – which means I have gainful employment. I speak up for myself and I speak up for those who have no keys. I mentioned recently to a friend that there comes a time in everyone’s life where they need to use their voice. I am simply grateful I’ve had so much support in finding mine.

These three things, in every particular combination, define my advocacy work, define my consulting work and define my person.

Four years ago on this very day, I ingested my first Tamoxifen pill and felt I transitioned from cancer patient to cancer survivor. Today my personal life and my advocacy life are very much intertwined. I am gutted with every loss in our community and I am buoyed by every NED or stable scan. I am skeptical regarding news of “breakthrough” science but am an eager collaborator with those individuals and organizations taking a person-centric approach with their research. I spend hours holding space for those who are scared, angry, confused or relieved and then I spend hours on searching for potential treatment options for those who have exhausted the options provided by their physicians. I am grateful to have clarity of purpose (if a slightly overbooked calendar) and an incredibly supportive, brilliant medical, research and advocacy community to work with me.

That is what I am really doing.

And my goal EVERY. SINGLE. DAY. is to find a way to stop premature death from all cancers and to preserve the highest quality of life along the way.