Tuesday, August 4, 2015

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 15th 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!

Saturday, July 18, 2015

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.

Monday, July 6, 2015

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.


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.

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

Monday, June 1, 2015

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 8th 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 30th 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 30th 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

Tuesday, April 28, 2015

Unexpected Results & a Two-Way Street

So, that didn’t go exactly as I’d expected.

I’ll preface this entire post with the phrase “I am fine” and “It’s not cancer” before anyone gets too concerned. In the next however many words, I feel compelled to share one of the most stunning personal positive examples of patient/provider communication I have encountered.

Just over a year and a half ago, I began taking the drug Tamoxifen to keep my estrogen loving cancer away. Within a couple weeks of beginning the drug, I noticed a flurry of side effects. One such side effect was a tingling in my lips. My much adored oncologist explained, “Tamoxifen is very drying, so it could be dehydration. Or, it could be a brain tumor.”

{deafening silence}

“It’s not a brain tumor!” I insisted.

She smiled, “It’s probably not. Let’s watch it.”

So I watched it.

I watched it continue to get worse.

In April 2014 I went to see my oncologist for a six-month check-up and to bid her a fond farewell before her maternity leave and subsequent resignation from the practice. When I mentioned the tingling had not only continued but had expanded, she ordered an MRI.

“It’s NOT a brain tumor,” I insisted again, much preferring to blame this and every other negative or annoying body ache-pain-swelling anomaly on Tamoxifen.

“I’m an oncologist,” she smiled reassuringly. “I think everything is cancer!”

On May 2, 2014 I had a brain MRI with contrast - the results were “No Intracranial Metastasis.” 
A great big happy dance ensued and life continued. While officially my face tingling was considered idiopathic, I have spent the past year happily blaming it on Tamoxifen*.

Most of my Tamoxifen side effects ebb and flow but in March my left side tingling had progressed to a numbness so severe I  found myself rushing to the mirror several times a week to check the symmetry of my face. No drooping? No problem.

Not really. I was frightened.

Rather than make an appointment with my new and not-so-favorite oncologist, I made an appointment with my beloved primary care provider who subsequently sent me immediately to a neurologist. And that is how I ended up back in the claustrophobic loud tunnel yesterday afternoon, lying very, very still trying to imagine only best case scenarios, counting backwards from 1000 by 3s.

The MRI/MRA test results arrived in my email inbox within four hours – an absolute record! Since I was receiving results via email, I knew the results could only be “This is nothing, have a good day!” But when I opened them, this is what I found from my neurologist:

I've reviewed the results of your recent MRI. This test shows no abnormalities to explain your symptoms on the left face. This is good news.

The radiologist wasn't able to definitively say but thought perhaps there is an aneurysm on the right side. He recommends that we get a follow-up view of the vessels in 6 months. If we do find something there, the size of it is so small that at this point it would not warrant any treatment. We will do the follow-up MRA that he recommended. I've ordered it for you today and as we get closer someone will contact you to schedule it.

UH. Uh?!?

The first two sentences were expected, the second paragraph was not. An aneurysm? An aneurysm? Those are bad. Like really bad.

I run, I cycle, I get excited at ball games, I get wound up when my kids don’t do their chores. And I might have a blood balloon ready to pop in my noggin?!

The first five minutes, I did nothing. I just thought, “It’s not cancer. That’s good. That’s REALLY good. But… uh…”

Perhaps I should have prefaced the results email with the fact that I met my neurologist merely 10 days prior to the MRI. She quickly made me feel at ease with her active listening, eye contact and what I felt was genuine interest in me as a person. In our short visit she asked all the right follow-up questions to make me feel that I was far more than a set of symptoms to her and I walked out of that office feeling as if we’d developed a plan together. I sent a follow up email thanking her for all of the above.

Since, prior to the noisy tunnel visit, we had already exchanged a series of gratitude related emails, I turned to technology one more time with the following:

Thank you for the lightning fast turnaround on my test results! Unfortunately while I expected the first part (and am THRILLED there are no growths/tumors in my noggin!), I was a bit taken aback by the mention of a possibility of an aneurysm. I realize it is simply the word itself that makes me nervous since I associate it with catastrophic health events.
I also realize that the radiologist was unsure so this is a 'maybe' option anyway.

That said I have a few questions:
~ Beyond returning for another scan in 6 months, is there something I should be on the lookout for (beyond the obvious signs of an active stroke) and/or be concerned about?
~ How common are similar tiny aneurysms in the general population?
~ Are the images available in my online EHR? Can I get them?

Again, thank you for the swift return of results - very much appreciated!

I read my email several times just to ensure my extreme anxiety was carefully veiled with overtones of pragmatism before I pushed send. Thankfully, she saw through my attempts at a cavalier attitude and responded immediately with:

Yes this is a "maybe" and not terribly concerning.
Still I get the concern that that word creates and that is appropriate concern. We all have heard of this word associated with really bad things.
Small aneurysms are fairly common in the general population and in your case we call this an "incidental finding" meaning that we found this only because we were looking for other things, not because it is related to your symptoms. 
Given the small size if we find it again and it is still this size there is not much we can do other than continue to do follow-up scans. However, the follow-up scans are important because it can change in size (increase) and then we would consider treating it to prevent the risk of rupture.

The things to look for are just as you would expect: stroke like symptoms.
Also a very very severe and sudden onset of headache would be concerning.
For either of these things you should plan to come to the ER for evaluation and let them know about your prior MRI findings.

CALLING ALL PROVIDERS: please re-read that email snippet one more time and let me point out the highlights, from a patient perspective.

Clinical Reality: Yes this is a "maybe" and not terribly concerning.Patients NEED this and expect it from you as their trusted healthcare provider. If I trust you, I trust your professional opinion.

Emotional Validation:Still I get the concern that that word creates and that is appropriate concern.” Patients NEED this too. With these words I was completely validated as a human being with emotions and therefore much better suited to hear and trust the clinical realities. With those words, she leveled the playing field for me. She had understood my concerns and acknowledged they were valid concerns. And, feeling heard, I could trust her original clinically related statement – this is not terribly concerning.

The combination of acknowledging my anxieties, providing the clinical reality and adding the appropriate additional information to answer all of my articulated questions, took my stress level from an 11 ½ to a 4. With time, I expect that level of anxiety to continue to decline. Also, I tend to be easily distracted so a ‘maybe aneurysm’ will surely get boring after a bit.

Unexpected results such as these could have created quite the emotional quagmire. In fact, I've been in similar quagmires before. Had I sat quietly with my results and my fears, I'd still be sitting with both. The patient/provider relationship is a two-way street. Had I not reached out via email with my concerns and questions, my need for validation, reassurance and answers would not have been met. Had I reached out and not received emotional validation along with the clinical realities, my needs would not have been met either. Those unmet needs could have led to another time-consuming appointment or, perhaps worse, elevated cortisol levels and the invasion of unnecessary excess anxiety.

While the results were definitely not what I expected and I am still without a clear diagnosis on my face numbness (although trigeminal neuralgia is in the running whenever I feel like letting Tamoxifen off the hook), thanks to honest communication between patient and provider, I actually feel more comfortable today than I felt yesterday.

*Similar to many others, my Tamoxifen side effects suck and I’ve often referred to the drug as “a safety net made of razor wire.” That said, I made a decision to take the drug for one year as prescribed and then re-evaluate for the next year. I’m on month 20 and will either drop it or re-enlist on July 17, 2015.

Wednesday, March 25, 2015

Death in the Family: A Conversation Catalyst

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, March 22, 2015

Authenticity: Walking the Walk

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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