My Neuroses are Showing

I cancelled my brain MRI.

For months I have been putting off the six month ‘check-in’prescribed by my neurologist. My aversion to the test is complicated. This would be the third brain MRI I’ve had in 18 months and the fourth MRI with contrast I’ve had in two years. Occasionally my scanxiety is related to what we might find but, more often than not, my larger concern is the safety of the contrast. Then there is the obvious question around what happens if we actually find something. Yes, I realize that my neuroses are showing.

Ultimately I keep coming back to a statement I’ve heard repeatedly by physicians and patients alike, “Skip the scans and get busy living.”

I have been busy living. But sometimes I feel like the ‘busy’ is more of a frenetic “HOW MUCH LIFE CAN I CRAM IN?” kind of a busy as opposed to a more patient “I’m savoring every possible moment on the planet” kind of busy. I want to achieve the latter but I sense I am kind of stuck in the former.

After the $hitty Summer of Cancer, I left the high tech industry and focused my skills in the world of community and patient engagement. I love connecting people to people, people to organizations, information to patients and most of all, I love helping patients find their “outside voice” while navigating the healthcare system. But there is a flip side to the warm fuzziness of what I do. I continually work with people who are dying faster than the general population. For as ecstatic as I am every time a friend receives a status of NED (no evidence of disease), I am emotionally pummeled when their cancer advances and I am thoroughly devastated with news of their deaths.

If I were good at compartmentalizing, my personal disease roller coaster might not be so rollerly. But, I’m not good at compartmentalizing. I absorb the energy of those around me. I connect with these people, their stories, their fears and hopes and dreams. And I can see myself in every one of these stories.

And, when I look at how quickly the health and wellness tides can turn, I feel like my focus should always be to participate physically and emotionally to the utmost in life. Anna Craig has called this “living condensed.” I love that term but am finding the realities of living a full life challenged by the realities of living a life within the realities of my life challenging. How’s THAT for meta?

There are so many things I want to write about but they all feel stuck somewhere between my brain and my fingers. I want to write about gratitude. I want to write about despair. I want to write about fear. I want to write about hope. I want to write about anger, hate, love and what comes next. I want to write just to get the emotional baggage out of my head and off my proverbial back. I want to write to help others in the same boat realize they are not alone.

So rather than sit around cursing my current inabilities, I’m breaking things down remedial writing style. Apologies in advance.

Gratitude: Gratitude is a fat, self-nurturing emotion. Filled with the heaviness of being thankful, I feel happily bloated physically and emotionally. Perhaps ‘bloated’ isn’t exactly the right terminology. Sated? On Thanksgiving Day, my family and I were wandering around Florence, Italy with dear friends (our Framily) stuffing ourselves with gelato and high on espresso and life. On November 30^th I quietly celebrated the two year anniversary of my very first gratitude party. Just six months from diagnosis and thrilled to be cancer-free I had hoped the party would put the period on the $hitty Summer of Cancer. While it did not, the party was a huge milestone and I’m happily, bloated-ly, sated-ly grateful to be cancer-free another two years later.

Despair: Just days before returning home from our whirlwind Italian tour, I read the news that Maria Fowler had died. Maria was a member of the #bcsm community and metastasized earlier this year. Her death, like so many others, brings home the reality of a disease that kills over 110 people per day.
 

Fear: I am afraid. Not every day but sometimes. I am afraid of cancer returning. I am afraid of not living every day to the fullest. I am afraid of treatment. I am afraid of screening (most notably the brian MRI I have put off yet again). I am afraid of being too afraid to enjoy the gifts that surround me every damn day.

Hope: When people question how I can surround and immerse myself in the cancer space on a daily basis, I remind them (and incidentally myself) that this community is full of hope. And, as with any community, when one member loses hope, we hold hope for her until her hope energy returns. Every time I connect individuals I do so with the hope that we become closer to moving mountains. Because we are all stronger together.

Anger: I am angry at the bureaucracy of a healthcare system that often marginalizes patients to a member number and a set of ICD codes. I am angry that with all of the advances in research, we still have people dying because they are unable to access a particular treatment. I am angry that, in a country as resource wealthy as ours, people’s life spans and quality of said span are often determined by their zip codes. I am angry at diseases and at individuals who take others’ lives with blatant disregard. I am angry that I waste my precious time being angry.

Hate: Why? Why? Why? Is it really so difficult for humans to realize that we are all more similar than different? Global events that boil down to a hatred between ideals taken out on individuals stupefies me. And, as I mentioned before, angers me. It also saddens me. Beyond words.

Love: More love please. I love working with brilliant, compassionate people that can and will change the world. I love that I wake up every morning and have another day with which I can experience, share, learn and do.

Tossing out sincere apologies for the structure of this post and gratitude for the ability to finally get a few of these things off of my proverbial and literally reconstructed chest.

What comes next? I’m not sure. Tomorrow comes next for many of us. I still vow to treasure each day but I also commit to not putting such an undue amount of pressure on the treasuring part that I forget to actually enjoy tomorrow. And that MRI? Eh, we shall see.

Paradigm Shift Please: Reactive to Proactive; Illness-Based to Wellness-Based

Yesterday evening I had the good fortune to participate in the first half of the weekly Healthcare Leadership chat (#hcldr). As always the audience was filled with a combination of clinicians, patients, advocates, techies, community builders and those of us who don many hats. As always the conversation was rich and thoughtful. And, as sometimes happens, there was a tweet that stuck with me for hours and my 140-character response feels insufficient to address the concerns I have.

The conversation and the chat questions revolved around the similarities, differences and potential applicability of humanitarian efforts, like those of #hcldr guests Doctors Without Borders, to population health. Again, relaying the richness of the conversation is not my intent and will not be relayed in this post. Instead a single tweet seems to enunciate for me one of the challenges we have in healthcare today. And, as the oft-quoted G.I. Joe reminded me and countless others in the mid-80s, “Knowing is half the battle.”

The second chat question was “What should be the standard of care in low resource settings?”

My initial response was:

Always start w/ patient goals, regardless of zip code. MT @hcldr: T2: What should be standard of care in low-resource settings? #hcldr

— Stacey Tinianov (@coffeemommy) October 28, 2015

As I typed, I realized how ethnocentric my response was. Zip Codes is US terminology. Fail. My intent was to convey that regardless of where a person lives, or their forced standard of living, their personal choices should absolutely be respected.

The T2 response that raised the hairs on the back of my neck was the following:

T2. In resource limited setting even more important that the standard be prevention rather than treatment #hcldr

— Brian Castrucci (@BrianCCastrucci) October 28, 2015

Depending on how I read this statement I either agree or vehemently disagree:

• In a resource limited environment, prevention or risk reduction should be fundamental. AGREE.

• In a resource rich environment, prevention/risk reduction is less important and treatment after the fact is okay because it’s available. Vehemently DISAGREE.

After a bit of a back and forth online, I am 100% convinced Brian intended his statement in the manner with which I agree. However, the statement and the conversation bring up a much bigger issue and a much bigger reality.

Our US healthcare system, in a resource rich area rife with pockets of inequality, is an illness based system. By and large we wait for people to get ill, treat them, treat the side effects of treating them and then treat them when the original medicines/treatment produces unintended negative consequences.

Focusing on risk reduction and prevention where prevention is possible is THE absolute way to go, regardless of zip code, latitude, longitude, ethnicity, socio-economic status or any other defining characteristic demographic. There is absolutely no such situation where improving heath literacy, personal accountability for health and striving to reduce the incidence of disease doesn’t make sense.

Resource limitations are relative. In instances where clean water, shelter and food are scarce, resource limitations are obvious. However, when we look at elements like clinician burnout, appointment backlogs, insurance reimbursement backlogs, caregiver energy, patient emotional well-being, caseload overload, etc. we can and should consider such resources as limited. The mindset that, in ‘resource rich’ areas we have the luxury of focusing on illness treatments rather than reducing incidence and prevalence of illness is, to be blunt, bass-ackwards.

Nearly a year ago, I created a flip idea based on generating incentives to shift from an illness based into a wellness based system. Flip 28: Create Preventive Care Incentives: Incentivize patients for on-time wellness and preventative care. 

Admittedly, this was my first flip and the content was lacking some of the specifics that would have made it easily actionable. But it is still a damn good idea. I’d like to resurrect the idea and join forces with those who already see the incredible need and benefits from shifting from reactive to proactive mode in healthcare. I’d also like to help highlight people and organizations that have achieved success with a preventative care model because, for some, the catalyst for change is the ability to visualize prior successes.

Just because people can afford treatment doesn’t mean that treatment is the ideal course of action. Imagine the emotional and financial benefits to reducing illness risk in individuals and preventing illness in the population. Imagine the luxury of a system not overtaxed with sick that has the ability to spread valuable resources to areas that require treatment. Imagine a healthcare system that focuses on protecting health rather than trying to re-establish a quality of life after the devastating impacts of chronic disease.

In partnership with others, I’d like to shift the paradigm from: “In a resource limited environment, prevention or risk reduction should be fundamental” to “In every environment, health education and support to drive personal risk reduction and population disease prevention is fundamental.”

Please let me know if you’d like to help.

Five days, three cities, two conferences and one triathlon

Five days, three cities, two conferences and one triathlon.

It was a busy week.

Last year I crashed the Stanford Medicine X party for an evening social. This year I was the fortunate and very grateful recipient of golden tickets from two well-respected innovators in the healthcare space. Anne-Marie Cunningham got me in the door at MedX Ed, a two-day medical education conference focused on the question “What if we…?”

And GillesFrydman, founder of ACOR and co-founder of SmartPatients, expanded my pass, and my mind, by welcoming me in to the official 3-day Medicine X escapade.

In between the two, I was fortunate enough to attend the first day of morning sessions of ASCO’s Breast Cancer Symposium to not only learn about the latest and greatest in breast cancer research and treatment but to meet a handful of luminaries in the field and especially in the world of #BCSM.

My conference goals were simple:

• Learn as much as possible across both conferences
• Meet the multitudes of people who have been so instrumental in my healing as a breast cancer patient and my evolution as an advocate
• Live tweet as much knowledge to the masses who are unable to attend in person

Before the learning could commence, the gratitude had to be expressed.

The magnitude of positive impact on the following individuals is difficult to articulate. Whether they provided emotional or educational support or whether they simply are leaders in the space of patient activism, each one of the following people has been fundamental to my growth as a patient, as a person, as an educator and as an advocate.  

Each long-awaited face-to-face encounter was like unwrapping a present that you've anticipated for years. Words were pretty inadequate for some of these in-person 'reunions' so hugs were a defacto replacement. 

Hanging out on the West Coast with Alicia (@stales)

Becky (@rjhogue), me & Marie (@JBBC)

The highlight of MedX Ed Day 1 happened moments after I entered the main stage area. Attending with a friend who also planned to live tweet the event, we chose a high table in the back for its access to power and laptop space. Within minutes of setting up shop, Dave deBronkart walked in. Dave is a founding father of the ePatient movement, fondly referred to as @ePatientDave and a man I’ve wanted to meet for some time. He has his own cancer story but, in my mind, the most powerful part of his story is not thriving eight years after a Stage IV cancer diagnosis, it is the empowerment he has modeled for all patients that received a diagnosis since declaring himself an e-patient in 2008.

Hey @corrie_painter look! @coffeemommy found me! #medx pic.twitter.com/j7F4t7zJuP

— Dave deBronkart (@ePatientDave) September 23, 2015

MedX Ed vacillated between a sage on the stage model and an intimate series of breakout groups focused on transforming the educational experience for the medical community. We shared our personal experiences with social media as a tool for education as well as the power of stories and experience to help generate understanding of the patient as a whole person beyond their disease. There were several occasions where the #IWishMyDoc / #IWishMyPatient theme surfaced and each occasion was met with spirited and respectful conversation about the need to create an environment of trust, respect and empathy that focuses on patients as more than the sum of their diseases. 

On Friday, I trudged through morning traffic to San Francisco for #BCS15. My first priority was to meet Dr. Deanna Attai and give her my very personal thanks for all of her contributions to the #BCSM community and the breast cancer community as a whole. We found each other just prior to the opening session and, without hesitation, she said, "We must take a picture!" In the #BCSM community, it is widely understood that, if there is no photographic proof, it simply could not have happened.

Great to meet @coffeemommy! #bcs15 #bcsm pic.twitter.com/0xt40zPKyk

— Dr. Deanna Attai (@DrAttai) September 25, 2015

As we listened to the "State of the Art Breast Cancer Care: Past, Present and Future" I tried to live tweet as much as possible but found myself needing to focus on the rich content in order to understand it. I saw my disease pathology discussed and took away a few key nuggets:

"Chemotherapy only effective in preventing early (first 5 years) recurrences" 

Personally this statement makes me even more comfortable with my decision to have the OncotypeDX test and avoid chemotherapy.

"Late recurrences remain a major problem" 

Personally, this statement scares the $hit out of me which I why I continue to educate others on the needs and benefits of focused research.

In between presentations, I was also fortunate enough to meet Dr. Don Dizon, a physician well-versed in bringing up topics otherwise swept under the rug, namely the sexual side-effects of disease and treatment. 

On Friday afternoon, I traveled 20 miles south back to Palo Alto where it was 20 degrees warmer and might as well been a difference conference planet. The Breast Cancer Symposium followed the classic, if antiquated model of presenter after presenter in a large ballroom. MedX followed a similar large main stage concept but augmented the stage with club lighting, club music, a plethora of balloons and various statues of Zoe Chu, the MedX mascot.

The REAL Zoe Chu & Alicia

The environment was fun and energetic but the advocate in me kept considering how many additional patient and/or med student scholarships could they have extended if some of those dollars were spent differently.

 Left: A little lunch break with the inspirational Liza Berstein (@itsthebunk) & #HCLDR co-founder Colin Hung (@Colin_Hung)

Below: Finally meeting Natrice! (@Natrice)

Saturday morning, rested and rejuvenated I chose to zero in on a single conference rather than split my time again. I chose MedX for the workshops and small breakouts as well as the mainstage lineup. More heartfelt meet-ups turned tweet-ups but none more exciting than being gifted my pink socks by Bill Kelly. The #pinksocks began at HIMSS when ReelDx COO Nick Adkins donned them reminding us all that we are driving a healthcare revolution, starting from the ground up. I have coveted the pink socks for many months and so I promptly donned them, to the excitement of many and the consternation of anyone with any fashion sense.   

Although both conferences were to continue on Sunday, I knew Saturday was my final conference day. Sunday had been spoken for months before by a friend who wanted to complete her first triathlon. We had matching tri suits and it was a high priority for me (despite the fact I had not been swimming since my mastectomies!).

So Saturday evening turned into a bit of a dance party as ePatientDave passed around vintage ePatient t-shirts and we grooved in our matching pink socks to Bruno Mars “Uptown Funk.” 

As we were getting silly, DarlaBrown and Molly Lindquist approached me, “We are SO excited to meet Coffeemommy.” I was taken aback. The tone of their voices, their eye contact and their smiles convinced me they were authentic in their eagerness and excitement and I was honored but also a little amazed. 

Feeling that I had made an impact on the very people I felt made a considerable positive impact on me was a fantastic way to close the evening. It really is all about connection. In healthcare and beyond.

As a side note, Darla captured the mini dance party via periscope but, when you’re singing and dancing with Dave video is the least of your worries, keeping up is the only thing that matters!

MedX was amazing yet I left with a sense of urgency beneath my connected contentment. In the confines of MedX, we were all preaching to the choir. Everyone who attends already 'gets it' and now the biggest challenge lies ahead - how do we take our collective knowledge, insight, passion and energies and catalyze change.

Sunday dawn broke as my friend Nichole and I drove over to the East Bay for her first ever sprint triathlon – SeeJaneTri. Nichole and I walk every week – Half Marathon Mondays – but neither of us had swum, biked or run in quite some time. To be fair, I’ve spent a lot of time pedaling but my concerns for the bike were centered around remembering how to shift, steer and brake.

Our triathlon goals were also simple:

• Don't drown
• Finish with a smile

We arrived, two nervous women in a sea of nervous women. 

On the heels of hanging with my Transformational Healthcare Twitteratti, I was well aware at the most visceral levels that we are all more similar than different so, I did what I ALWAYS do in times of stress and uncertainty. 

I talk to people. To hear their thoughts, consider their advice, share their energy. 

We met a handful of women also nervous about the swim. Just knowing that you are not alone in your fears is healing – in the cancer space, in the chronic disease space, in the triathlon space – in EVERY space. Community is inspiring, healing, motivating and comforting. 

Working off some pre-event jitters with some stink-eye.

Sunday felt like a different planet from the connected health education experience of days prior but, at the very core, it was exactly the same: we are  absolutely stronger together.

There is No “Good Cancer”

A friend recently tumbled out the words that I remember being stuck in my own throat two plus years ago, “I have cancer.” We traded some swear words about the whole affair and then I did what I’ve done consistently for the last couple of years, I set about researching her disease and her treatment options. Imagine my surprise when I discovered her cancer being described as “the GOOD cancer.”

Full stop. A good cancer?

That would be an oxymoronic (emphasis on the moronic) statement if I ever heard one.

Cancer sucks. Regardless of the type of cells choosing to go rogue.

Cancer is the antithesis of ‘good.’ Beyond the immediate surgical, chemical or radiological treatments, cancer means always looking over your shoulder. Cancer means overthinking every ache, pain and bruise. Cancer means adding the “mean survival rate” years to your current age and subtracting the years you’ve been cancer free. Just to check again whether or not the probability exists that you will see your children graduate from high school, choose a life partner, have children, grow old with your spouse.

Cancer is a thief. It takes pieces of your body and it takes your peace of mind.

Mere weeks before my friend was diagnosed with thyroid cancer, another friend was diagnosed with ovarian cancer. Opposite ends of the body yet very common in the shock, frustration, anger and periods of soul-crushing fear.

In the cancer community, we are all more similar than different.

September is National Ovarian Cancer Month. Ironically September is also Thyroid Cancer Awareness month – I Googled it. And, for as steeped in the world of oncology as I am, when my daughter asked me what color the solidarity ribbon was, I had to Google that too. In other words, for as in touch as I am in the cancer community, I am ignorant regarding the ins and outs of thyroid cancer awareness.

But I am absolutely aware that there is no such thing as a “GOOD cancer.”

There is, however, good research. And we need more of it.

Please take six minutes to watch the American Academy of Cancer Research 2015 report video showing what good research can mean to individuals and their families:

Cancer treatments can only be improved with adequate funding of research. We need to move well beyond the ‘awareness only’ phase and onto the ‘focused action’ phase.

All cancers suck. But focused research that extends treatment options and quality of life is GOOD.

Dancing Thru the Mountains

When we signed up for the Mt. Tam Double Century a few months ago, I had three main reasons for wanting to move beyond the solo century experience and beyond the 200K tandem distance.

• Understanding: Ultra distance cycling is my husband’s passion. I am SAG (Support and Gear) for the big events but I wanted to share an event with him on the bike as opposed to in a chase vehicle. I wanted a window into the next level of cycling I’ve only observed from the outside.
• Personal Challenge: We used to refer to marathons, centuries as triathlons as “stupid human tricks” and have always needed a regular dose of the insanity. This was simply the next level.
• Couples Connection: I wanted another opportunity to touch the level of intimacy that only happens when two people work as a team to overcome adversity. There is nothing more ‘together’ in my opinion than tandem cycling. Cancer is up there but simply not as fun.

On August 1, 2015 we rode 200.1 miles on our tandem as two of only 300 allowed participants in the Mt. Tam Double Century. Depending on whose Garmin you’re reading, we ascended between 15,600 feet and 16K+ feet over Mt. Tam, Coleman Rd, Marshall Rd and a few other seemingly gratuitous hills. We spent close to two hours at the rest stops chatting it up, stretching our legs, munching on ride food and almost 14 hours just riding our bike.

A truly epic day.

Countdown to a 5am mass start

This was my very first double century and our first ride over 200K on our tandem.

“Uh, this isn’t a good first double century ride,” said everyone in the know. “Have you been training?”

All I could think was, “Together, Brandon and I can do anything.”

And I said as much.

We have been through adversity; we’ve come out the other side together. My cavalier attitude however, was tempered by some of Brandon’s reasonable misgivings. My husband had concerns about our ability to successfully complete the double. He was worried I didn’t know what I was getting myself into and, most importantly, he didn’t want to see me suffer.

A little pensive, perhaps?
(Didn't see this image until after we finished!)

While I tend to undervalue my abilities in some areas, I feel nearly invincible on the tandem. And it shows. I cannot steer, I cannot brake, I have absolutely no control. But I can push a gear. I feel safe and I feel strong. On the tandem, I have a level of 'together' confidence that has, in our 20 years of marriage, never been achieved before.

The weeks leading up to the ride were a bit tense as he suggested I ride my underutilized Cannondale to train. I protested vehemently that I didn’t want to ride without him. As a typically fiercely independent female, this was a paradigm shift.

I will admit, I was not a smart athlete about this event. To be fair, I am rarely a smart athlete about any event. Whether it’s a marathon, a tri or a century after 15 years of not riding, instead of “putting in the time” training, I often just suck it up and figure it out on the course. It’s not a conscious choice, it’s just the way it’s been. Kids take time. Jobs take time. Training is hard to schedule. But probably the single most important factor to my nearly unshakable confidence, is my knowledge that I can suffer; I can persevere long enough to overcome adversity.

In one of many pre-ride conversations about being physically under prepared, I explained to Brandon that I have a list of moments in my life I can recall to assess perceived suffering.

Twenty years ago it was my first marathon. Having a drug-free natural child birth made the list almost 13 years ago. Sitting cross-legged in my bedroom with uncontrollable chest muscle spasms two days after a second mastectomy and the beginnings of bilateral reconstruction now sits at the top of the physical suffering list.

But endurance events are not simply about physical adversity. 

Neither is life. 

There is an emotional and mental space that must be acknowledged, touched and overcome. There are the outright emotional abysses and I have a list of those that I can dip into as well. “Is this as bad as finding out the heartbeat of what was to be your first child no longer exists?” “Is this as bad as the dark place where you were unsure whether your marriage would survive?” “Is this as bad as temporarily swallowing the personal fear, terror, confusion and lack of control you felt in order to tell your two children you have cancer?”

No athletic event ever trumps that list. EVER. And so, to date, regardless of how challenging things get, I know these lists exist in my own head and I know how to access them to both motivate myself and to meditate.

The reality is, although I wasn’t looking to suffer, I didn’t want this double century to be easy. I wanted to embark on an adventure that challenged us both. I wanted this course to be one that neither of us had done before. I wanted to explore unknown territory. And I wanted to do it together.

We started at 5am. Pre-dawn.

Beginning in darkness and finding the light together cannot be metaphorically overlooked by the writer in my soul. I devoured it and used it to push physically.

We climbed. We climbed slowly. Powering up the mountain(s), physically attached and mentally focused on the same goal. Again, I love, believe and desire everything that image represents to a marriage.

And then we flew. And it felt like dancing. It always feels like dancing. Faster and faster. Then slow and steady. Another hill? So what. Little circles. We’ve got this. Together.

Mt. Tam Summit - above the clouds

The tandem has become somewhat of a totem in my life. We purchased it less than a year ago as a 15^th wedding anniversary present to ourselves. Twenty years prior, early in our dating lives, we had tried a tandem. It didn’t work. We didn’t communicate well on a bike. I couldn’t relinquish control.

I am, by most anyone’s standards, a control freak.

Even after 10 years of marriage, I could not fathom giving up all control. On the back of a tandem, the stoker has no brakes, she has no ability to steer. Sitting behind your captain is the epitome of a trust exercise.

On May 30, 2013 I lost the perception of control I had maintained for the better part of my life. After playing by all the health rules, here was the wild and woolly world of breast cancer. Four surgeries in 10 months found me, at times, more dependent and yet more determined than I have ever been.

Mortality hits me in the face more often than I care to admit to anyone but my husband. And this is one of the many reasons I can pedal into oblivion with him.

When we get on the bike he inevitably asks, “Where do you want to ride?” And I inevitably say, “I don't care. I’m letting go.” 

I am not a climber, yet we have tackled Mt. Hamilton, Montebello Road, Sierra Road, a trip up the Southern California coast and many other classic big climbs together. I just pedal and I just trust.

As our Garmin’s flashed 49.8mph on a downhill, Brandon yelled, “Wow, that’s ballsy. Sitting on the back of a bike with no brakes and no steering capabilities.” I laughed. “No hon, it’s not ballsy. It’s the epitome of trust to willingly give up that control.”

Around mile 150, we were both feeling great. He yelled back, “Not a lot of cancer coaching going on here, eh?” A reference to some of the bucket list conversations and fears I had expressed just days earlier. “Nope,” I chuckled, enjoying the Cancer-Free-Get-Busy-Living mentality.

Some thirty miles later we picked up a solo rider named Clay. He had been in our cohort for the better part of the day and now we were headed back with plenty of flat road and only a single climb left. Clay sat in behind us for a bit. He was a strong, capable rider but grateful for the pull. As we wound our way into town, Clay thanked us for the draft and mentioned that three years ago he was in the middle of chemo and radiation. He had been 60 pounds heavier at the time. He had overcome a lot to share part of the ride with us.

I smiled and teared up, “Wow. Wow. Wow. Congratulations,” I said.

“Thanks,” he said. And mentioned something akin to “It’s been a long journey.”

There was silence.

“I’m two years cancer free,” I said. We just looked at each other and smiled.

Living life. Really living life.

Feeling connected, feeling strong. I pinched Brandon on the butt (easy access for a stoker). He knew what the pinch meant. Meeting Clay was simply the icing on the cake for my day’s affirmation.

We did it. I can now understand the different physical and mental cadence of a double century. We were absolutely challenged although there were never tears or doubts as I imagined there could have been. (I never had to mentally access my 'worst ever' lists.) And we connected. 

We are inextricably connected whether we’re on the bike or not but again, everything is just a little more fun on a bicycle built for two.

As an acknowledgment to Brandon, I’ll admit that some additional training would have sped up the day. But it wouldn’t have changed the journey.

We are a fiercely strong team and we are dancing through life’s mountains. Together.

Finishing happy before 9pm!

Two Year "Tamoxiversary" + Side Effect Survey

As the woman handed me the little brown bag and my credit card receipt yesterday, she asked if I was, “familiar with this drug.” I smiled, “Two years ago today, I cracked the seal on my first bottle of Tamoxifen.”

At the time, the anti-estrogen and I were embarking on what we thought was a 5-year affiliation. Since that time, breast cancer research has determined that our togetherness should extend a full decade.

We have a tumultuous relationship, to say the least, and my part of the agreement is to recommit each year. Yesterday’s casual handing over of the credit card was the subtle recommitment ceremony.

Tamoxifen is considered an anti-estrogen and blocks the effects of naturally occurring estrogen in my body. This sounds all bad but, considering both my tumors (invasive ductal carcinomas) as well as the ‘diffuse DCIS’ in my left breast all thrived in an estrogen rich environment, estrogen blocking is considered a necessity.

And yet there is a flip side of the drug.

Tamoxifen comes with its own black box warning and more than a handful of diverse and adverse side effects. For instance, “Tamoxifen maycause cancer of the uterus (womb), strokes, and blood clots in the lungs. Theseconditions may be serious or fatal.” 

Originally I viewed the prescription, through post-operative rose colored glasses, as a recurrence prevention tool. And then the side effects kicked in and I started researching in order to make some educated decisions.

Tamoxifen does not prevent breast cancer, a breast cancer recurrence or a metastasis. Tamoxifen has been proven effective in reducing the risk of recurrence in women with estrogen positive cancers. There is also research that suggests women without a diagnosis but a strong family history of the disease may receive some benefit from the drug (called chemoprevention).  

In other words, Tamoxifen reduces the chance that my cancer will come back. No promises, no guarantees but some scientific data that says, more or less: A group of women with some similarities in cancer pathology were split into two groups. Fewer recurrences and fewer metastases occurred within the group who took Tamoxifen.

Since there is no clear path, my decisions around the drug are all made on the premise of  an overall Risk/Reward calculation.

My side effects range from annoying to frightening so judging quality of life of the drug on a day-to-day basis is a bad idea for me. I would have said my farewells to Tamoxifen early on and, if I truly treated my relationship with this drug the way I treat my relationships with people, I would have pulled a restraining order on this co-dependent relationship.

In our house, when anyone forgets what they’re saying/doing/thinking mid-sentence or immediately after, the rote response is, “Are you on Tamoxifen?” Cognitive impairment, referred to as “la la-ness” in our family, is a side effect of the drug. Post-it notes, the Google calendar (for EVERYTHING), lists and repetition are convenient fixes for a brain that seems to not hold information for a reliable amount of time the way it used to. Risk vs. Reward score? I can deal with this.

On the mornings I wake up barely able to close my hands or bend my legs because of joint pain, I curse the drug and then start moving. Exercise helps to abate my joint and musculoskeletal  issues. Risk vs. Reward score? I can deal with this.

The side effects that have proved most unnerving are the ones no one recognizes as side effects. Within a month after beginning Tamoxifen, I noticed a tinglyness on the left side of my face. I bumped up my hydration and monitored the annoying tingle. Flash forward two years and the tingly-ness has extended across my entire cheek area, sometimes getting so severe I have to rush to the bathroom mirror to make sure my face is not drooping in a classic stroke manner. Two MRIs later we have confirmed there is no brain tumor and my trigeminal neuralgia is, according to my health record, idiopathic.

The three other women I’ve spoken with, who also presented with trigeminal neuralgia after starting Tamoxifen, believe we absolutely understand the cause. Two of those women have chosen to stop Tamoxifen and their tingly face symptoms have vanished. Risk vs. Reward score? I am struggling to deal with this particular issue but, as long as it’s not a brain tumor or a stroke, I’m good.

There is so much irony in some of these details. Soft tissue swelling and random rashes have upset the apple cart as well. After daily visits and a full battery of testing in the allergy clinic, the agreement between my primary care provider, my allergist and, reluctantly my oncologist, is that I’m actually allergic to Tamoxifen. So I take Loratadine (an antihistamine) to tamp down my body’s responses to the drug. 

To geek out for a second, inflammation responses have been implicated in the development of cancers. And, the drug that I am taking to keep cancer away causes an inflammatory response to the point I’ve been prescribed an antihistamine to treat the inflammation. Hmm... Really?!?!

Yep. True story. Risk vs. Reward score?

Right now I have got nothing better going.

Taking Tamoxifen is absolutely a quality of life decision. I refer to the drug as my “safety net made of razor wire” and after several internal back and forth battles, I have decided to reevaluate my decision to take the drug on a year-by-year basis. Make no mistake, I have wanted to quit Tamoxifen many, MANY times. Finding others who share similar side effects and brainstorming unique ways to address those ‘adverse events’, have helped me maintain my sanity. For instance, my own research has discovered that splitting up my dose to 10mg 2x a day vs. the originally prescribed 20mg 1xday helps reduce the severity of many of the physical side effects.

Ultimately, I try to tackle many difficult issues in a dispassionate mathematical kind of way. Cognitive issues, joint pain and swelling, soft tissue swelling, random rashes, tummy issues, moodiness, medical menopause. And that pesky face numbness that landed me my very own neurologist and recurrent MRIs all sit on one side of the equation. *

On the other side of the equation sits the possibility of being cancer free for as long as clinically possible.

And, in my mathematical world as in my reality, the possibility of achieving and retaining NED has significant value approaching infinity. And having access to a cadre of women who understand my frustration, dilemma and ultimate decision is priceless.

Ironically, there is now data suggesting those that experience specific adverse events (researchers call them AEs, patients call them $hitty side effects) have an increased survival benefit from the drug. 

Regardless of the ‘benefits’ of side effects, many women are stopping the drug based on quality of life issues.  A September 2013 article references a study published in the British Journal of cancer, “The authors found that nearly four out of 10 women on the study completed less than 80 per cent of their prescription. Among women whose cancer came back, such ‘low adherers’ tended to have their cancer come back sooner.”

And, on the other side of the equation, are women who suffer side effects in silence fearful of appearing/sounding ungrateful for the availability of a treatment when others have few options.

To celebrate two years down, or perhaps to celebrate making a decision to continue for another year, I’m kicking off a completely patient-driven, side effect/quality-of-life survey on the side effects of Tamoxifen. Let’s provide valuable content into the real patient experience. Please feel free to share your experiences and please share the survey so others may share their experiences.

Ten years of Tamoxifen. From a clinical perspective, I’m 20% of the way there. From an I-get-to-decide perspective, I’m taking it one year at a time.

Are you currently on Tamoxifen? Have you taken Tamoxifen? Did you stop taking Tamoxifen? Please consider sharing your thoughts and opinions here!

* The hot flashes don’t even rank. I kind of like the unexpected warm hugs I receive on a completely unpredictable basis.

Thoughts Wanted: Connected Cancer Care

It’s official.

On July 9, 2015, I will be participating in the President’s Cancer Panel workshop: “The Connected Cancer Patient: Vision for the Future andRecommendations for Action.”  Technically it has been official for over a month now but I’ve been somewhat certain that I would receive a call that said, “Hey, thanks anyway but we found someone better than you to represent the patient voice.”

However, on July 2nd, mere minutes after ending a collaboration call with fellow invitees Janet Freeman-Daily and Corrie Painter, I received my zip file of itinerary and agenda from the NIH.

So, it is officially official now!

Specifically the invitation states:

We’re asking you because you have the expertise and knowledge needed to help us envision a fully interoperable health system. Even as evidence emerges across health areas suggesting that connected health approaches can lead the way to better health outcomes, it is not yet clear what a truly connected health system of the future looks like, what barriers to achieving it are highest priorities for intervention, what individuals/patients and their families want from such a system, and what strategic partnerships are needed. Broad stakeholder involvement will be needed in efforts to achieve a connected health system that starts with patients at the center; clearly, this requires action beyond the health care system.

Patients at the center.

Patients.

At.

The.

Center.

This phrase is a veritable mantra in the patient community and, when the invitation came through, I must have read this line six or seven times and then looked back at the organization the words came from. The tippity-top of our governmental heap. Regardless of your opinions of our president, the Congress or governments in general, you must admit, this is HUGE. And I’m honored to be contributing.

Inviting patient opinion is just good sense but, inviting patients to sit at the table and truly collaborate is fantabulous acknowledgement. Acknowledgement that patients are experts too and acknowledgement that the only way to build a truly connected health care system is to truly connect with those involved in the process. The majority of the existing pain points have been topics of discussion for years, now we need to connect around visions, wants, desires that can better meet the needs of all. 

While the physical table is not immense enough to invite every cancer patient and advocate to join us, your individual and collective opinions are critical and necessary to create a truly representative vision.

On July 7 (8:30pmET/5:30pmPT), the #hcldr (Healthcare Leadership) chat will be gathering thoughts on the topic. All are welcome and additional context and details are available on the #HCLDR blog. During the chat, the following questions will be posed:

• T1 What are critical unmet health care needs among patients and families that could be addressed with connected health approaches?
• T2 How could connected health approaches promote patient activation & engagement, particularly in cancer?
• T3 How can engaged patient communities be encouraged to contribute to health system reform? How might their role be formalized?
• T4 What communication tools would help patients be more engaged in their care?

Personally, I would like every interested voice and representative patient group to be exemplified in one way or another at this workshop and I acknowledge that Twitter doesn’t work for everyone. So, if I haven’t already taken you out for a cup of coffee to discuss your thoughts or bombarded you with a “What do YOU think?” email, please hit me up before 7/9 with an email, a tweet, a Facebook post, a phone call, a response blog, whatever you feel is the most appropriate medium for sharing your thoughts on concrete visions for the future of connected health.

Send me your thoughts on the above questions, send me thoughts on similar questions, send me particular considerations for an underrepresented demographic, or just send me a diatribe on what your visions for a connected healthcare system look like. (My email is conveniently my first and last name at gmail dot com. If you put something catchy in the title like “President’s Cancer Panel” or “Thoughts on Connected Health” it will magically rise to the top of my inbox!)

If surveys are more your style, please feel free to provide your answers to all of the #hcldr chat questions here. 

Please know that, as advocates for, and representatives of, the patient voice, Janet, Corrie and I will be as front and center and vocal as allowed in this collaborative environment. We are looking to learn, to share, to emphasize action and to move the collective needle ever forward.

NOTE: 
On July 9th, you can follow the panel highlights on Twitter using the hashtag #cHealth4Cancer

Cancerversaries, Neuroses & the Beauty of Choices

While I loved the powerful irony of spending the two-year anniversary of my cancer diagnosis at a conference filled with professionals targeting the annihilation of the disease, I stayed home this weekend. Instead of flying to Chicago to attend the American Society of Clinical Oncology (ASCO) annual meeting, I spent the weekend with my family. On Saturday, we power-shopped for an 8^th grade promotion dance dress. We spent the afternoon reconnecting with friends at a Camp Kesem SCU Reunion. A walk, frozen yogurt, popcorn and a movie followed.

Because May 30^th was a cancerversary.

Exactly two years ago, during a memorial for a friend’s mother, I took a call from the surgeon who performed my excisional biopsy. I was already in tears so, when she told me that I had breast cancer, my new tears of fear bled into the slow trickle of wetness that was already on my face.

Six months later, I attempted to take back the 30^th by throwing an enormous Gratitude Party for all those who had supported us in what we now refer to as “The $hitty Summer of Cancer.” And, at that time, I just desperately wanted to wear the Won and Done mantle and move on with my life.

That didn’t exactly happen.

Significant reminders exist. Scars both physical and emotional. And I still commemorate all the dates around scans, biopsies, diagnosis, second opinions and surgeries. They are all my cancerversaries and, like it or not, part of who I am now.

Over the past two years, I’ve learned that survivorship is not always simple. While day-to-day my own mortality is no longer at the very forefront of my mind, occasionally it rears its head wildly, as it has these past few weeks, leading up to significant dates.

Moments of surreal, unfounded, neurotic panic have flooded the quiet moments. In the month of May, I am attuned to just how quickly life can change. I vividly remember going from baseline mammogram to sitting in the radiologist’s office. I vividly remember the wire location exercise prior to my excisional biopsy. I vividly remember the 80s music playing in the surgical suite. I vividly remember that phone call.

 And I vividly remember the fear.

I remember feeling overwhelmed by that fear while I wore the emotional shield of empowered pragmatism. I remember hearing “brave” and feeling terrified. People have mentioned post-traumatic stress in the same sentence as cancer for a reason - the experience is, as an understatement, traumatic.

The fact that this May also brought a brain MRI and an endometrial biopsy, did nothing to relieve the anxiety-riddled memories. However, sitting around the house urgently thinking “I NEED to make NEW memories… NOW. Right NOW!” was probably the biggest clue that something might be amiss.

In reality nothing was or is amiss. This is survivorship, or just plain life, after a cancer diagnosis. There are weeks and months of fabulous days and then a few intense moments in between where recurrence, metastasis and mortality are heavy on my mind.

Occasionally those moments of intensity can be crushing.

Ultimately a moment of intensity a few weeks ago led me to the decision to miss out on the people and presentations that make up the annual ASCO meeting. If I attended the meeting, I would miss out on making memories with my family. And, when feeling the intense need to live a condensed life, every memory counts.

As the meeting approached, I was bummed to miss out. Yet, as the meeting kicked off, I realized that not being THERE allowed me to be HERE. Even so, it took a few days for me to settle in to the wisdom of my choice.

Perspective is a funny thing.

Instead of seeing the latest research presented by the researchers themselves, I was able to shop for a semi-formal dress with my daughter who is typically loathe to don anything but jeans and a t-shirt. Instead of spending a few valuable days with amazing patient advocates and brilliant advocates for patients, I spent an afternoon with my son working on his First Aid merit badge. Instead of attending a Tweetup, I snuggled with my husband on the couch with a bucket of buttered popcorn and watched a Redbox movie projected on our living room wall.

And I celebrated a cancerversary with my family. Rather, I celebrated and they kindly acknowledged.

There was no cake. There were no candles. But I am here and that is a fact we are all equally grateful for, even if the emotional highs and lows around these anniversary dates don’t always make sense to them. 

(Hell, they don’t always make sense to me.)

Survivorship is fraught with ups and downs but time seems to be easing some of the larger issues. Exactly two years after a breast cancer diagnosis, I noticed that all my “big decisions” this weekend were categorically unrelated to treatment and my fears of missing out were absolutely unrelated to life and death. In retrospect, my thoughts this weekend never once reflected on losing both breasts as well as my peace of mind.

So why celebrate some of the most challenging dates of my life? Why do I choose to remember? Because they are days and emotions I can never forget and, if I’m going to acknowledge them, celebrating seems to be a helluva lot more fun than “commemorating."

Celebrating a cancerversary means I’m still here and still able to make choices. And, no matter how difficult, there is beauty in the ability to make choices. There is incredible beauty in just being on this planet another day. And, with that perspective, I can clearly see the beauty in just living life and every beautiful neurotic moment!

Pink Hydrangea
Gratitude Party gift & General Life-is-Beautiful Reminder