Saturday, May 7, 2016

Empathy, Education & Access


Another friend died this week. Cancer killed her.

While I do my best to honor and remember those who have touched me in some way, shape or form, I don’t choose to write about the passing of each and every friend who dies of cancer. That would make my blog more of an obituary section than any of you could probably imagine.

But I must share elements of Diane’s story because they are a critical conglomeration of things that need change in our healthcare system. Things that could have made a difference.

Diane was diagnosed with Stage 3 breast cancer [IDC (ER+/PR+/HER2-)] in August of 2012 and began neoadjuvant chemotherapy with Adriamycin, Cytoxan and Taxol (AC/T)in October 2012.

Full stop. There were two months between her diagnosis and the initiation of her treatment protocol.
Not okay.

Diane plowed through four infusions of AC without issue and then had a horrific reaction during her first Taxol infusion. Her Taxol dose was halved and she continued with the protocol.

Following chemotherapy, she had a double mastectomy and five weeks of radiation.

She was cleared from active treatment and put on Aromasin. She was never given a follow up scan.

Full stop. She was NEVER given a follow-up scan. Not okay.

She began actively researching ways to relieve her chemo-induced neuropathy and I met her early on in my own breast cancer saga in the Summer of 2013. I found her to be an incredible self-advocate and a candid voice in the realm of treatment toxicities.

In November of 2014, while mowing her lawn, she collapsed and was taken to the hospital. In that visit, the emergency room discovered she had a collapsed lung and mets in her bones, chest wall and liver. She was placed on Xeloda for three months but showed progression in her first scan so was moved to Ibrance. After six weeks, she stopped the Ibrance based on side effects and began seeing a holistic practitioner in the Summer of 2015.

Full stop. She STOPPED treatment based on side effects. She was never offered a clinical trial, an alternate treatment or even an empathetic conversation about QoL versus overall survival. And, in her words, she stopped trusting the healthcare system at that moment.

In October 2015, I convinced her to learn a little bit more about her options including clinical trials. She, like many other individuals, associated clinical trials with experimentation human guinea pig style. She was concerned about toxicity of treatments she might receive as well as concerned about receiving a ‘sugar pill.’

Before we could even examine options, we needed to understand her cancer and her previous treatments. And that’s where is became even more clear to me that the system had failed Diane. She didn’t know her cancer’s pathology. She felt she had been told a variety of things around her HER 2 status and she didn’t understand how she could be ER+ if she was in menopause. She had asked questions but felt rebuffed by her oncologist. Based on her knowledge, or lack thereof, Diane had never participated in shared decision making with her healthcare team – she didn’t have the knowledge to do so.

But she was a fast learner.

With the documentation we needed written down, she physically marched her way up to her well-respected facility and asked for her:
  • Surgical Report
  • Pathology Report
  • Treatment Summary

Wrestling that documentation from her healthcare facility was akin to pulling teeth and it took her two weeks to get the documentation she needed to better understand where she had been with her cancer treatments. We met for breakfast and reviewed all the documentation. When walking through her pathology report, I defined some of the shorthand that had stymied her before. She stopped reading, looked up at me and said, “So THAT’s what I’m dealing with.” There was no fear, horror or dread. She was delighted to finally understand her own disease.

Full Stop. Three years. Over three years passed after her cancer diagnosis before she finally understood what she was dealing with. Not okay.

We identified a few trials she might qualify for but she felt pretty good health-wise and her mistrust of the health care system was greater than her interest in seeking treatment. She stuck with her trusted holistic provider and continued with a regimen of ginger tea and cleanses. And, even if I disagreed with her choice, I respected her decision.

Her January 2016 scan showed progression in her liver, bones and lungs.

In January, we had another conversation about options and she was ready to give the healthcare system another shot.

Diane qualified for several clinical trials however she was simply too exhausted and too mistrustful of the healthcare system to take advantage of any more treatment options. She declined options and put her mind to the business of premature dying.

We cannot fix the system for Diane but, with a few modest changes, we can certainly reduce the risk of gaps in communication and understanding being a defacto process for others.

EMPATHY. We must start with empathy. Diane did not feel like her doctors liked her or understood her. This was the first nugget of mistrust that moved her away from a system that likely could have extended her overall survival as well as her quality of life. Everyone deserves empathy from their healthcare team. We all want to be seen, heard and held. Empathy is the secret decoder ring.

EDUCATION. In order for shared decision making to work, people must understand what it being communicated. There is a HUGE knowledge gap between many patients and their providers. Rather than depend on the patriarchal “Do as the doctor says” method, we must work with individuals to meet them where they are and bring their knowledge base up to a level where shared decision making can actually happen.

ACCESS. Every advanced stage cancer patient should have a scan post treatment. Diane did not. Turns out her facility was in the middle of being acquired by another and so the focus on her case (and many others?!?) likely were lost in the transition. Access was also an issue with clinical trials. While the closest trial was only 50 miles away, Diane felt like that was too far to depend on others to take her. No amount of discussion could convince her otherwise. But the idea of access runs the gamut. Physical access to care, financial access to care, access to information and accessible (understandable) information are all part of this puzzle.

I am very grateful I was able to spend some time with Diane a few weeks ago. And, maybe when I have the emotional energy for another post, I will write about the awesome way Diane chose to face her mortality with the same tell-it-like-it-is grace and candor with which she faced life. Cancer robbed her of her health but that feistiness was still shining through. 


Thank you Diane for all that you taught me, for all that you shared with our community and for making the world smile & laugh with your sass and your spunk!

Wednesday, March 23, 2016

Through Darkness to Light


NOTE: This is the second blog post catalyzed by a weekend (March 18-20) at the Commonweal Retreat Center as part of a Bay Area Young Survivor retreat. There may be more.

Just over a week ago, I went indoor rock climbing with my husband, daughter and cousin. Earlier in the year I had articulated a 2016 goal of climbing a V1 - think REALLY easy but harder than a V0 - bouldering problem. My daughter took to rock climbing several years ago but turned competitive right around the time I was having surgeries to remove and rebuild my breasts. Her heart’s desire was to have the whole family share her enjoyment of climbing and, for the last couple of years, I have been physically unable to do so.

So I set a goal, as I am wont to do when I need a bit of motivation. The short version of the story (that I’ll maybe blog about one day) is that I not only successfully topped out on a V1, I managed to scare the heck out of myself on the wall a couple of times and really enjoy the process.

Anyway, I walked away from that day with my husband’s words in my head, “It was so fun to watch you scare the $hit out of yourself and then try it again.”

It was fun for me too and I made a quiet vow to remember that a certain type of fear is good. And acknowledging that fear and moving forward, is even more exciting.

So, back to the retreat.

On Friday morning, as we were introducing ourselves to each other, one of the staff members mentioned, “This weekend is the Equinox, a time where we move from darkness into light.” The statement became a theme for the weekend and when I awoke the next morning at 5am, I realized just how dark it could be at the edge of the Pacific Ocean.

I am typically up around 5am. I enjoy the quiet and I enjoy exercising in the dark. Since I was in new and unfamiliar surroundings, I assumed I would walk from Pacific House down the dirt road to the main road turn off. I knew it was scarcely a mile, if that but figured it would be more about getting out an exploring in the dark and less about actual exercise.

I awoke shortly after 5am, dressed in comfy clothes, topped with a warm jacket and a beanie. I quietly made my way down the creaky stairs, topped my travel mug with leftover, slightly warm coffee and headed out onto the front porch of Pacific House.

Then I promptly leaned back in the house and turned on the porch light.

The trumpet vines were in full smell bloom and the ocean waves were audible as I placed my journal on the edge of the stairs, I felt grateful to experience the sight, the scent and the sounds pre-dawn. I started down the driveway and stopped barely 50 feet from where I started.

“Damn. It’s DARK,” I thought as I walked back to the front porch. And then, as I considered sitting on the step, I remembered that I was here to stretch myself.

I set out again. On my second attempt, I distanced myself approximately 100 feet from the porch before I turned around again. I set my mug on the front steps and walked over to the shadow of a large tree where I began stretching in my wanna-be-a-yogi fashion. The ocean pounded the coast and I longed for the first indications of light so I could embark on my journey.

Whether impatience or bravery was the catalyst, I’ll likely never know but shortly before 6am, I picked up my coffee mug from the front porch and walked purposefully down the road. There was a bit of moonlight as I escaped the shadows of the enormous hedges and the dirt road appeared to glow a bit more than the poison oak infested greenery. But still it was dark. Very, very dark.

The evening before, the moon was big. In the morning it was gone.


I heard an owl and while the “Hoo, Hoo” startled me, I also found being alone and slightly on edge a bit invigorating in the context of my intentional adventure.

I pressed on and arrived at an open area with cars parked in neat rows. There was the sensation of openness which simultaneously felt less constricting and more exposed.

I continued on, feeling the ground beneath me, more attuned to the noises in the brush. A rustle and run. I imagined both bobcats and bunnies but pressed on.  More aware and less afraid. And still walking blindly toward a destination I had seen only once the day before in the daylight. My challenge. The destination was not my goal, ultimately it was the journey.

I knew poison oak lurked on the sides of the road. I heard more rustles and convinced myself they were friendly animals, more frightened of me than I of them. I walked quickly but consciously.
And then I arrived at the gate.

My destination - the flashless photo of the sign

I took a flashless photo when I arrived at the Commonweal sign, as a reminder of the adventure I’d articulated, embarked upon and completed. And then I turned around and walked back. A morning marine layer prevented much of the morning light so the return walk remained nearly as dark as the cautious trek out. But I’d walked that path before, I was less afraid, more confident.

The entire escapade took fewer than 30 minutes. I arrived back at the porch with some semblance of light, owls had stopped calling and the chirpy birds were awake.

And back again

Although I selected a destination as a goal, the journey was the real goal. And I had moved not simply from darkness into light but actively moved myself THROUGH the darkness, beyond the fear and into the light.

And I could do it again. 




Monday, March 21, 2016

Balance is a verb.


NOTE: The next several blog posts have all been catalyzed by a weekend (March 18-20) at the Commonweal Retreat Center as part of a Bay Area Young Survivor retreat.

Balance is a verb.

On day one of my Commonweal retreat, we were introduced to a bowl of beads and some hemp string. We were encouraged to create and immediately I chose to create my goal for the weekend: Finding Balance. I placed a silver charm in the center of the string. I placed a bead representing Chaos to the left and a bead representing Peace to the right. Both beads were green but Chaos was oval and swirled whereas Peace was round and clear. I knotted each bead so that no bead was touching another and so that both beads were equidistant from the silver charm.

The silver charm represented me.



Chaos is important to me because that is where I feel the most learning taking place. Chaos is where I feel the most emotional and spiritual growth.

But I cannot thrive in a constant state of Chaos and require moments of Peace to feel grounded. To just Be. Ideally I would like to find the balance between these distinctly different states. A weekend at the edge of the Pacific Ocean, nestled near forest canopy and always within earshot of the sounds of the crashing waves seemed like an appropriate place to get closer to finding balance.

I shared my necklace/totem with my fellow participants so they perhaps could help me in my quest – offering support but also ideas for discovering this elusive balance.

And then I was told something that changed everything.

“Balance is a verb. Not a static noun.”

I was standing outside the main building at Commonweal, about to enter the library for a movement activity. I heard the words. I felt the words. I consumed the words. I internalized the words.

Balance is a DOING, not a state of being. Balance is a DOING, not something to find.

Instantly I felt whole and decidedly unbroken. Instantly I felt whole and not lost. Instantly I knew that the act of being emotionally and spiritually imbalanced at times was not a failure but a natural process.

Just as our physical centers of gravity change rapidly with growth, our emotional and spiritual centers of gravity shift with life’s challenges and gifts. And whether I am swaying with those moments like a tree sways through a storm or whether I’m head and body forward surfing through life’s adventures, I am balancing.

Balance is an activity not a destination. Because balance is a verb, not a static noun.


Saturday, March 12, 2016

PART II: Teen Sugar Highs


And BOOM. There it is. Definitive diagnosis of Fructose Malabsorption (formerly referred to as Dietary Fructose Intolerance or DFI).

Ri had his 44g dose of fructose at 9:07am and we were sent out into the waiting room to spend the next thirty minutes while the sugary substance worked its way through his system. When the doc returned with the ‘blower’ Ri was surprised to see 0ppm as the result.

“That’s weird,” he said a bit mystified. “I can definitely feel the bubbles.”

We were reminded that, if his body produced methane in response to the fructose as opposed to hydrogen, this test would unfortunately provide false negative results.

And so we went back to waiting. At 10:08am, Ri said, “She’s late. I was supposed to have tested again already.”  Unbeknownst to me, he’d put an alarm on his watch and was following the testing protocol to the letter. As I approached the check-in desk to ask about the timing, a sick toddler began to scream and an infant let loose in sympathy.

“Excuse me, we need to check for hydrogen and we’re a little overdue,“ I said to the admin. “But, I can see you’ve got a lot going on.”

“Hmm. That’s unusual, she’s usually very punctual,” she replied without making eye contact. “I’m sure she’ll be out soon.”

“Perhaps you could call her?” I suggested knowing immediately that we were triaged to the back of the proverbial bus.

Ten minutes later, our breath kit arrived with apologies for the tardiness.

As Ri physically prepared to blow into the machine, I mentally prepared for another hour and 45 minutes of futile waiting and bad magazine reading.

He evacuated his lungs and then continued to watch the monitor. “Wow,” was all he said.

I quickly craned my neck to see what he was seeing: 48, 49, 50, 51… A test of 20ppm would have indicated a diagnosis of fructose malabsorption. In classic Ri form, he was chasing those bonus points.



The breathalyzer stopped at 55.

At that exact moment my emotions were a combination of dread and relief. The “Oh $hit” and “At least now we know.”

Ri was nonplussed and not one bit surprised. “I knew it was that Mom because when you stopped buying apples, everything got better.” And, hungry after his fast, he didn't miss a 13-year old boy beat, “Is Pho Ga low fructose? Can we go to lunch now?”

At some level my emotions are still a combination of dread for THIS diagnosis and relief for A diagnosis. Ultimately, at least now we know and, as the 80s icon GI Joe always reminded us, “Knowing is half the battle.”

Monday, March 7, 2016

Teen Sugar Highs + Hydrogen Breaths

Sitting in the waiting room of pediatric gastroenterology, the double stroller next to me contains two young children, both with hacking, productive coughs. My son has just ingested 44 grams fructose and we’ll be here for the next three hours or until he “breathes a 20” on the handheld hydrogen breath test, whichever comes first.

Our pediatric GI relationships began shortly after his birth when he was diagnosed with gastroesophageal reflux disease, or GERD, and began losing weight at the wee age of four months. Major surgery was recommended and we deferred hoping to find a less invasive solution. Oddly enough, we found chiropractic care. Physical adjustment, combined with Prevacid, kept his ruminations below 30x day and took him off the short list for a fundoplication. He began to thrive.

Reflux has never vanished from our lives but everything has been manageable, until recently. At 13, my son is 5’6”. He stands a full 2 ½ inches over me, yet cannot seem to break the plane on 100 pounds. And a couple of months ago, he started losing weight.

As a mother, I have extensive on the job training and a high comfort level with acute illness, first aid, sugar-induced hyperactivity, night terrors, friend problems and homework frustration. Another “failure to thrive” diagnosis, however, prompts only dread.

At the most basic level, I just want to fix things. I have gut issues, food allergies and intolerances and I know just how frustrating it can be to have persistent tummy troubles. The teenage years are fraught with so many other speed bumps, concern about what you can and cannot digest effectively enough to maintain your body weight shouldn’t have to be part of the process.

So, after a two-week elimination diet, a course of probiotics and a trial of high fiber supplementation, Dr. A has suggested we run a hydrogen breath test. We are testing for a fructose malabsorption problem. So after swallowing the equivalent of a bag of Skittles dissolved in water, we’ll hang out in the waiting room for a couple of hours. Every thirty minutes, the medical assistant will bring the breath test to us and Ri will blow into it. His baseline parts per million of fructose was zero so a positive test is a reading of 20ppm at any time.



Unfortunately this test only measures hydrogen production and approximately 35% of the population actually produces methane rather than hydrogen with a malabsorption issue. In other words, we could leave here with no answers.

And then there is the perspective of the past few weeks and past few years: things could always be worse. This particular issue is disconcerting, frustrating and a definite annoyance but Ri is bright, happy and generally healthy. 

So, after a 12 hour fast, and a couple of hours hanging out with sick, and vocally unhappy children, at least our next steps are clear - he has already chosen his post-sugar high lunch spot.  



NOTE: This post approved for public consumption by the 13-year old. 

Thursday, February 18, 2016

Sitting with my Emotional Salad Bowl


Exactly two hours before my six-month oncology checkup and I find myself in that odd space between emotion and logic. I am ridiculously nervous and yet cognizant of the fact there really isn’t anything to be nervous about.

But my anxiety is real and I’ll own it. If I’ve learned anything over the past few years, I have learned that leveraging logic to ward off fear and anxiety takes more far energy that simply leaning in and embracing the emotion. All things flow more smoothly when I sit with my emotions and allow my emotions to sit with me.

While I’m sitting and ‘owning’ my feelings, I’m acutely fascinated with the dichotomy between my “rational brain” and my “less rational, more emotional” side. So I’ll give them both a voice. (Some people prepare for appointments using mindful meditation or distraction techniques. Evidently I just type.)



Logic says: There is no magic test for breast cancer recurrence. Today is a checkup. Nothing will happen. I will meet my oncologist, she will ask how I’m feeling, she will examine my reconstructed chest and check for lumps, bumps, soreness, etc. She will ask how Tamoxifen is going and I will give her all of the gory details. I’ll ask her to refill my prescription and I’ll ask for assistance in finding a new primary care provider since mine has left the practice.

Emotion says: There is no magic test for breast cancer recurrence. Today is supposed to be uneventful. But. Your baseline mammogram was supposed to be uneventful and the @#%! hit the fan in a big way at and after that appointment. The real albeit less-rational side of me is also assessing all of the other ‘health issues’ going on right now and wondering, quite frankly, “Is this cancer?!”

The logical response is, “No, your GI issues probably have nothing to do with cancer” but logic doesn’t always reign supreme in my noggin. The logical response is, “No, your newly wonky menstrual issues probably have nothing to do with cancer” but saying those words aloud don’t really allay my fears. The logical response is, “No, the slightly enlarged lymph nodes in your left armpit probably have nothing to do with cancer.” 

The little-bit-less-rational-and-slightly-alarmist side says,  “But. Just but.”

As this emotional/logical ping pong goes on in my head and the clock moves ever closer to appointment time, I’ve just realized another emotion is peeking out from behind the anxiety: eagerness.

Truthfully, I’m actually a little excited. On the heels of attending January’s Survivorship Symposium and a couple of weeks prior to this appointment, I emailed my oncologist to ask her for a survivorship care plan. She said she’d, “pull a packet” for me and I’m eager to see what makes up my plan. My expectations are low but I’ll consider whatever documentation I am provided a starting place to build something that truly meets my needs. From there I’m excited about helping others access and develop care plans that will meet their needs.

Anxious, afraid, excited, eager. (Sounds like I’m preparing for a skydiving adventure rather than an oncology appointment.) Looks like I’ve got a veritable emotional salad bowl.


I’m not entirely sure how these feelings will play out, amp up and/or dissipate over the next 90 minutes but I do know that my appointment will likely end the way it always ends, with a hug and overwhelmed with gratitude for another six months of no cancer and an incredible circle of support.

Friday, January 22, 2016

Survivorship Innovation with a Dose of Reality


As I sit here reviewing tweets and abstracts from last week’s Survivorship Symposium in preparation for the upcoming #BCSM tweetchat, I feel compelled to share a personal moment in time from last week and a moment that defines much of what it means to be an educator and advocate for those affected by cancer.

The inaugural Suviviorship Symposium was held in San Francisco, CA January 15th - 16th and was cosponsored by ASCO, AAFP and ACP. If the diversity in conference sponsorship were somehow insufficient, the diversity of specialties in the room confirmed that the needs of patients before, during and post active treatment were of primary concern. Onocologists, radiologists, primary care physicians, nurse navigators, cardiologists, epidemiologists, internal medicine docs, patients and patient advocates were all well represented.  As a patient and an advocate, I felt only acknowledgment and validation from the healthcare community that survivorship comes laden with its own burdens that for most people, involve physical, social, financial and emotional impacts. 

Innovative and integrative methods of whole person care were highlighted as ways to address these unique needs.*

High on the innovation and progress in the #SURVONC16 conference, I received an email. The first line tried to prepare me for the content:

“It is with a heavy heart…”

Those are the worst kinds of emails. To write and to receive.

I sat through a few more minutes of the presentation but suddenly the technical was uninteresting and I was unfocused. I left with my coffee mug in hand to wander, leaving a post for those who were closely following the conference via my tweets:


Like a fist in the chest.

I wandered upstairs to the poster session where coffee and tea are always readily available. I tried to take solace in the fact that this woman was an 18 year survivor before cancer killed her but, as I did the math, I realized if I were to ‘achieve’ living 18 years beyond my diagnosis, I would die at 58. I would leave my husband spouseless at 62. My youngest child would only be 28 years old and I may or may not have gotten to hold a grandchild in my arms. The tears brewed but didn’t spill over.
A young woman was creating a coffee masterpiece with cream and cinnamon and hazelnut syrup. The concoction was a sight to behold for a caffeine junkie like myself and I commented favorably on the dessert coffee. She mentioned she was unable to focus so thought coffee would be a good solution.

I mentioned I was also unable to focus so I was switching to tea.

I introduced myself and discovered she was local to SF and actually an infusion nurse. I thanked her for doing what she does on a daily basis and we began talking about survivorship programs. The distraction was nice but when I became excited about what her institution was rolling out, tears began rolling down my cheeks.

I explained that I wasn’t crying because of what she was saying but that I was struggling with the dichotomy between the innovation and energy downstairs and the reality that a woman just died.
If you want to understand the source of proverbial fire in an advocate’s belly, you likely have to look no further than their connections to others. Others who are suffering, others who have died and others who hold significant risk for being tracked into the health care system as a critically and/or chronically ill patient.

In a period of minutes I felt the emotional dichotomy between hope and despair. The future is bright and yet, for some, the future is not an option. As I stood there, trying to get it together, this amazing coffee concoction creator and compassionate infusion nurse reached out and gave me a hug. We chatted for a bit longer as I tried to reorient my focus on the present and the promise for the future even though I know many of the amazing people I learn with and from won't necessarily be here for that ever elusive 'future'.

So, when people ask why I remain steeped in the cancer space and why I spend my time working to change the slow moving goliath of a complicated health care system I give them a variety of authentic answers about making a difference, changing the system and working with amazing people trying to solve really complicated problems.

And, while all of the above are authentic reasons, ultimately my answer is: 

Someone has to because the status quo just isn’t working. 



*A more complete blog regarding themes and content of the Survivorship Symposium will be created and posted at #BCSM.