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?”

*sigh*

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 clinicaltrials.gov 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.




Sunday, June 4, 2017

National Cancer Survivors Day 2017 - Celebrating the Mundane



There are over 15 million of us in the United States and well over twice that many in the world.

Events have taken place all over the country but, on this particular national cancer survivors day, I am celebrating quietly.

There are no scenic hikes, epic bike rides or long runs in my plans for today. There are no dinner celebrations and there will be no cake. I am celebrating being alive with a decidedly mundane day. Coffee and a good book, apricot picking, apricot dehydrating, refrigerator cleaning out and crossword puzzles. The day is warm and gorgeous and I could be Out Living It with other cancer survivors and supporters but not today. Not for me. Today I’m sitting with my own no evidence of disease, relishing the fact that I am here and alive enough and healthy enough to be unabashedly boring.

Facing my own mortality in such an abrupt manner at the age of 40, triggered an almost manic response to life. Most days I feel compelled to make the most out of every single moment. While living out loud has certain je ne sais quoi, it can be, and has been, absolutely exhausting. Today I need a break. And today I feel entitled to take that break.

No one in my family has recognized the day and, honestly, that feels like somewhat of a relief. Four years ago, the diagnosis was so fresh and the fear was so overwhelming that I couldn’t imagine a time of normalcy ever settling on our home again.  Basically, the fact no one besides myself recognizes this day makes me feel finally out of that needy inner circle and grateful that, in at least a few ways, my children and my husband have moved on from cancer.

I say in a few ways because we will never outrun cancer, the collateral damage it foisted on each one of us or the resentment of the fear it still holds on our household.

Today may be boring but I am celebrating. I am celebrating my life and the lives of others.

We have been called survivors, warriors, thrivors, metavivors and many other intended-to-be-complementary monikers.  

But we are just people.

And, like most people, we are brave when we need to be; afraid when fear dominates; angry when cancer steals from us, our families and our friends; anxious when facing the unknown; thrilled when we achieve milestones of NED and stability. We are all pushing forward, many of us hand-in-hand. We are there to celebrate each others’ cancerversaries, catch each other when we stumble, kvetch about the less-often discussed aspects of cancer and absolutely there to comfort each other when the world comes crashing down.

In Cancerville, so much needs to be addressed, so much needs to be corrected. More communication, more collaboration, more research, more support. But that is not what today is about.

Today is a celebration for over 15 million people, their families and their friends. Today is a celebration of life with all its imperfections. I am celebrating quietly (and deferentially with those unable to celebrate heavy on my mind) but I am celebrating.

A little bit of boring goes a long way, and enjoying my own breath will amuse me for only so long.

Tomorrow definitely requires a more overt celebration... and perhaps some flourless chocolate cake.


Monday, April 3, 2017

Advocating in Public; Crying in the Shower


My friend Beth died today.

Metastatic breast cancer killed her. She is in no way the first friend taken by the disease and she certainly will not be the last. Even so, her death has hit me harder than many of the recent losses in the cancer community.

I wrote those words last week, on the evening that Beth actually died, but it has taken me another week to actually process her death and figure out this new normal of grieving with absurd regularity.

Beth was a self-proclaimed warrior but she was also a pragmatic who believed that the best death came through living the best life. I embrace her philosophy but I continue to rail against premature death.

And, after nearly four years in the cancer world, I find myself grieving very differently now.

A few weeks ago, I noted a new familiar pattern in my own behavior when it became obvious that her death was near. I avoided Twitter and Facebook and instead sent her photos via text from my garden. For me, my garden represents peace and life and, projecting a bit, I assumed Beth would enjoy a little of both with her limited mobility.

And I texted other friends, just to share love. Evidently honoring my expressive self, calms my inner worrywart.

So, when Beth stopped responding to texts, I continued sending the pictures, hopeful that someone on her end was either sharing the beauty or finding their own solace in my virtual garden.

When Beth actually died, I had nothing left for Facebook and Twitter tributes. I didn’t have the words and, in all honesty, I didn’t feel like sharing my grief that way. Part of me felt guilty I didn’t jump into the fray of homages but most of me knew Beth would totally understand.

I did text another friend that evening with the bare facts.

“I’m sad. Devastated and gutted.”

As someone else surrounded by the realities of cancer, she gets it. I didn’t need to explain anything. 
And that was the entirety of what I was able to express. As someone who actively processes through the written word, I was utterly devoid of thought beyond those emotions.

With the steady flow of death in the metastatic community, I feel like my own broken record when I say, “My friend died.” When people respond with the empathetic and appropriate, “I’m so sorry,” I just feel like I am stating and restating the obvious – too young, too soon, more research required. My expression feels circular. And pointless.

So I cry by myself now. Usually in the shower where no one can hear.

In the last several years, I’ve come to accept death as the natural end to life but I haven’t become inured to or at all comfortable with suffering and premature death. And yet I know it continues and will continue. The changes the advocacy community is catalyzing are real but too slow for many people I have come to know and love.

This is hard for me to accept. This is impossible for me to accept. And so the tears come for those we have lost but also for the realization that there are so many more who will die, too young, too soon.
Now with every death, I feel exhausted. And some days I feel like my own emotional burden.

There are options. I could allow myself to become numb to the deaths. But I won’t. I know that I will spend some time in every stage of grief for every friend who dies. But I will mourn in a smaller circle of support. And then I know I will pick myself up by those well used proverbial bootstraps and get back to advocating, educating and, most importantly, experiencing the joy of life.

In the process of reviewing all my text exchanges with Beth, I discovered she has given me a cut sheet for grieving the loss of her. In one of our last exchanges she wrote the following:

Thanks Stacey. 
One of side effects of not being able to ambulate freely for me is that I get a lot of time to think.
Now I need to start writing more, to share what I have learned more.
You have done and are doing that well.
As I move forward with more writing, I would love to learn more from you as to how to best amplify my voice. Are you willing to help?

I told her I was absolutely willing to help.

Rereading that message felt like re-receiving a huge compliment and being given a grief guide.

My emotion, my energy, my love and appreciation for an incredible woman who, while we interacted mostly over social channels, knew my heart and mind at a depth few others do, can now be channeled.

This is Beth’s site. It’s brief but it’s powerful. Read, learn, feel and then, if you’ve got the energy – advocate. For research acceleration; for improved treatments; for eliminating the stigma of metastatic disease.

In her journal post from January 14, 2016, Beth said, “I've wanted to be a teacher my entire life.”

You were my friend. 

You absolutely, positively, definitely were a teacher. Thank you.

Apple blossoms. And the last photo I texted Beth. On 3/28, the day she died.

Friday, March 24, 2017

Healthcare is an Investment


Three years ago today, I was waking up from what I hope is my final surgery related to breast cancer. Four surgeries in 10 months were physically and emotionally exhausting but the combinations of those surgeries were successful in not only making me cancer free but also in reconstructing much of what cancer stole from me.

My emotional wholeness is tied tightly to my physical wholeness and the serial process of mastectomy and reconstructive surgery would not have been possible without policy [the Women's Health and Cancer Rights Act(WHCRA)] guaranteeing my right to reconstruction after breast cancer. And the entire cancer fiasco would not have been financially feasible without a very comprehensive and robust healthcare plan.



My first two surgeries were covered under my work provided health insurance. I paid less than $1000 out-of-pocket for costs related to cancer in 2013. In November of 2013, I went on my husband’s plan and was therefore “double covered” for my second mastectomy and the start of my bilateral reconstruction with out-of-pocket costs totaling just under $500 for the month of January 2014.

On February 13th, 2014, I officially separated from my employer and the affiliated healthcare plan. My entire family became reliant on my husband’s employer-provided insurance. We were back to $20 copays and 30% of cost for diagnostic tests. More money but still affordable. A series of unfortunate events, which involved a leaking expander, pushed my exchange surgery up several months. And so, on March 24th, 2014, I went under the knife one last time to exchange my temporary expanders for what I hope will be permanent implants.*

This final and unplanned (after all, no one predicted a leaky expander!) procedure cost my family $8,000. Yep, even fully insured, there went eight thousand dollars out-of-pocket from my family’s savings with only two weeks notice. This unbudgeted cost did not bankrupt us but we felt it deeply and heard the sucking sound from our kids’ college savings account.

For anyone struggling with the math, this out-of-pocket maximum is financially far beyond “skipping the latest iPhone.” For anyone struggling with reality, this is a financial drop in the bucket compared to the costs of long term chemotherapy or chronic illness management.

Health is a fundamental pillar of our communities. And, in order to preserve health in times of wellness and seek health in times of illness, we need healthcare. It is my belief that healthcare should be accessible to all and affordable for all. Reducing premiums by reducing essential health benefit provisions defeats the purpose of health insurance. For those unfamiliar with ‘essential benefits’ here is a rundown:
  • Preventive Care
  • Outpatient Care
  • Emergency Room Care
  • Inpatient (hospital) Care
  • Pregnancy, maternity and newborn care
  • Pediatric Care
  • Mental Health & Substance Abuse Disorder Services
  • Prescription Drug Coverage
  • Rehabilitative services & habilitative services.
  • Lab tests

The recurring argument against essential benefits is the obvious “not everyone needs X, so why should we have to pay for it?”

The answer is, because you are part of a community. Because our nation is made up of more than just you. Because supporting our nation means supporting those within our nation regardless of their gender, race, religion, sexual orientation or annual income. Because contributing to the medical and clinical health of individuals in the community contributes to the overall health of the community. 

And, in all honesty, because you’ll likely need most of those services if you’re lucky to live long enough. If dollars are your motivator, please remember a community of physically and mentally healthy individuals contributes to a healthy economy. And then remember that reverse is also true.

Vaccinations, emergency room visits, blood tests when something feels ‘off’, prescription medication do we really want to create a society where these things are only available to those with greater financial means? Do we really want entire communities of people going unvaccinated or going without prenatal care? Even well-to-do isolationists will feel the ramifications of that reality eventually.

I’ve seen a lot of nationalism over the past six months. Unfortunately I’ve seen a lot of fake nationalism too. To be “pro-American” is to be pro-American. And to be pro-American means you support Americans. Even if they don’t look like, sound like, pray like, think like or make as much money as you do.

Some individuals pay taxes for roads they may never drive. Some individuals pay taxes for schools they never use. As individuals we fund the infrastructure of this country - healthcare is infrastructure. An unhealthy population is an unhealthy country. We can be much stronger together. But first we have to stop being so damn selfish.

I’d like to suggest a non-partisan paradigm shift where individuals see national healthcare as an investment: an investment in ourselves, in our families and in our country.



* For those who may be unfamiliar with reconstructive surgery, I feel compelled to inform you, this is not breast augmentation and this is not ‘pretty’ but this surgery allows me to put on a shirt and feel ‘normal’ even without nipples, even with diagonal scars across both sides of my chest.


Wednesday, January 25, 2017

Holding My Breath


This post has been brewing for months but it wasn’t supposed to be written today. It was supposed to be written in a couple of days when my pelvic scan results come back with “Yep, you have something weird but it’s not ovarian cancer.” And the title of that post was supposed to be something relevant to the enormous exhale of breath that I’ve been holding.  

Instead, scanxiety has taken over my brain, my chest and apparently my fingertips. Retail therapy works for many but writing therapy is where I find relief.

Today I have another pelvic scan, a follow-up to the November 30th scan that was supposed to ‘rule out’ any gynecological issues as a source of some of my GI issues. I’ve been having odd pressure on my left side. That pressure, in conjunction with some stomach upset and my cancer history, put me on the fast track to a gastroenterology referral. My GI doc is delightful in his ability to listen to me and dialogue with me. I feel seen, heard and held as a whole person in his care. In fact, he is so collaborative that he even brought in my gynecologist to discuss the case. And, In order to “rule out” anything GYN related, I was given the option of a pelvic ultrasound.

I should have known it wasn’t that easy. At this point, I am feeling like the poster child for ‘incidental findings’. A baseline mammogram found breast cancer, a brain MRI to rule out brain mets found an aneurysm and so, irritatingly enough, my “rule out” pelvic scan found a little bit more than nothing.

Officially, the ultrasound revealed two things: a 2.1 cm cyst on my right ovary that is likely yet another ‘side effect’ of Tamoxifen and a “complex solid and cystic lesion is possible but not definitive” on my left ovary.

For those not familiar with cysts and lesions around the ovaries, cysts are common and usually nothing to worry about. Complex solid masses could be caused by a variety of things but all those benign options have been pushed to the side in my mind because I also know that complex solid masses with vascularity can be ovarian cancer. And so that’s kind where my head goes even though I don’t want it to go there.

Truly, this is likely NOTHING. A bad picture of a hemorrhagic cyst is what we hope it is. 

To try and convince my heart to follow my mind, I took a long walk last night and sang in time with my steps, “It is nothing, it is nothing, it is nothing.” Indeed, you can all have a good laugh imagining me bundled up in a down jacket (because it WAS 50 degrees last night) speed walking 12,0000 steps muttering that mantra until a text exchange pleasantly shifted my song to Jason Mraz lyrics - Thank you Julie!

Even though I have tried to calm myself with logic, song and exercise, I’m a little nervous. A little frightened even. I’ve seen reality change in an instant. One lab result, one scan. There is just a nanosecond between those na├»ve moments where everything is fine and then everything is NOT fine.

Yet, if I’ve learned anything in the past few years, I have learned that fear feels worse when you keep it to yourself. So, even though it feels alarmist, even though it feels selfish, I’m sharing. 

Um. Finally. And thank you in advance.

Following the November scan, I spent the first two days trying to figure out how to tell my kids so that they 1. Realize that everything is fine 2. Understand why I’m likely going to be a bit of a freak over the next two months.

This was somewhat of a challenge since, as I wrote to a friend, “I am vacillating between telling myself, ‘It’s going to be nothing’ and screaming ‘oh f@$!, I have ovarian cancer.’”

The night after the scan, but before I received the results, I told my children as part of a much larger life conversation, that the fact they are close with each other felt like the biggest parenting success. I know they will always have each other. And, I’ll be honest, that statement feels somewhat more ominous in the context of the last few weeks.

While I wholeheartedly advocate for individuals “feeling all the feelings” and acknowledge that sometimes just ‘touching’ an emotion is the best method for moving on from that emotion, I sometimes struggle to let myself open the door when it comes to scary thoughts. Yet I also tend to operate contrary to the mindset of those who refrain from saying the worst for fear it might make it a reality. In other words, I go all the way to the worst possible outcome and then spend all my energy talking myself back to reality. It’s a thing. I know.

As a young child I believed that if I thought something horrible and I either wrote it down or said it out loud, it could never happen. I’m not sure why I believed this but I took this superstition with me into adulthood. I suppose the idea is that I believe I am the antithesis of prophetic or that the universe is inherently tricky and will change gears if it believes it won’t get the jump on me.

As an example, when my oncologist wanted to order a brain MRI after I was sidelined by some severe and persistent headaches, I said aloud, “But it’s NOT a brain tumor.” Saying the words released some level of anxiety in me. When I was sent for a second brain MRI to investigate the causes of my trigeminal neuralgia, I kept quiet. And, as if feeding my superstition, an aneurysm was discovered. Dammit, I didn’t think of THAT one.

And, since I’m baring my soul and sharing my superstitious mind, I shouldn’t stop at the halfway point. I have also been kind of freaking out about the follow-up date which was made for me – January 25th. Or 1/25. Or 125. As in CA-125 - the tumor marker used to detect/monitor ovarian cancer. Yep. That's how weird I am. *sigh*

Honestly, most of these two months have been fine. Only a handful of people know what has been going on but they’re amazing people who “get it” and continue to feed me with positive energy but support me in my “What If?” moments. I have not been Googling but I work regularly with women in similar boats so I am trying to simultaneously put things into perspective and give myself a break.
For the past two months, I've given myself permission to spend more than 15 minutes being upset (which is novel for me). I’ve generally given up on the intellectualizing and that allowed me a little freak out which, in turn, has allowed me to move beyond terrified and into “well, no sense is wasting eight weeks being anxious.

My coping mechanisms typically involve stupid amounts of exercise, gardening, reading escapist novels and baking things I can't eat. So I suppose the upsides to this scanxiety involve my regular appearances at the gym, completion of some long overdue winter pruning and a house full of warm oven baked smells.


As I type this out, I know I am sharing a reality MANY people experience. As I type, I also I feel compelled to put everyone else’s mind at ease. Please know that everything is likely fine. I have simply once again had a scan that revealed less-than-ideal and completely incidental findings.  In a few hours we will have new pictures and, in a day or so, you will likely experience my audible exhale.