Monday, April 3, 2017

Advocating in Public; Crying in the Shower

My friend Beth died today.

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

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

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

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

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

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

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

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

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

“I’m sad. Devastated and gutted.”

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

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

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

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

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

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

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

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

I told her I was absolutely willing to help.

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

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

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

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

You were my friend. 

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

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

Friday, March 24, 2017

Healthcare is an Investment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, January 25, 2017

Holding My Breath

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

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

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

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

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

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

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

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

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

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

Um. Finally. And thank you in advance.

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

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

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

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

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

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

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

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

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

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

Saturday, December 31, 2016

Grateful for 2016 & Happy Flipping New Year

In the last few weeks of the year, I’ve read many others’ thoughts on how best to say “good riddance” to a horrendous 2016. But I’m not ready to classify 2016 as a holistically horrible year.

Given a choice, I think I would likely choose to live in a perpetual state of feel-good-everything-is-connected-coffee-fueled-emotionally-positive mania. But, like most of us who are earth-bound, I feel hurt; I feel frustration; I feel anger; I feel disappointment; I feel anxiety and I feel loss.

2016 provided me with fodder for each of those less-than-snuggly sensations, and I spent various amounts of time in each of those emotional states. Yet 2016 also provided opportunities for new relationships, incredible knowledge acquisition and sharing, personal resolve, spiritual reflection and deep, deep connections.

Whether you were devastated by literal and figurative nasty politics, what felt like a slew of celebrity deaths or an overwhelming personal crisis, you lived life in 2016.

I lived life in 2016.

And, for that, I am grateful.

Perspective is a powerful tool and viewing a roadblock, a wall, a deep crevasse as a challenge is sometimes all it takes for me to move from a mode of deep despair to an attitude of “Let’s get $hit done.”

So, to that end, I am especially grateful for the challenges: the emotional challenges that allowed me to share my vulnerabilities and brought me closer to others; the physical challenges that empowered and emboldened me to push harder; the social challenges that have inspired me to be more vocal in my global community; and yes, even the parenting challenges that kept me on my feet and reminded me that guidance and growth in a family is a two-way street.

Bidding a fond farewell to 2016, I am looking forward to a new year, new opportunities, new connections. Thanks to the events of 2016, I know that putting one foot in front of the other will likely get me through the year but I’d like to focus my steps a little more deliberately this year.

In 2017, I will march, dance, waltz, crawl, ride, run, stumble and pirouette. I will cry, laugh, sigh, yell, sing and giggle. I will feel all the feels but I will be especially attuned to love – loving my husband, my children, my family, my friends, my community and… wait for it… myself.

Happy Flipping New Year. May your each and every day in 2017 be filled with LIFE!

Friday, September 30, 2016

Three Years (and Five Months)

It’s been three years since I was diagnosed with breast cancer. And so much has changed.
Actually it’s been three years and five months since my diagnosis on May 30, 2013 but it has taken me a solid five months to figure out exactly what has changed.

From the moment an individual is diagnosed with cancer, she is considered a cancer survivor. As one very wise 88-year old woman explained to me early in my journey. That said, true survivorship only tends to sink in after the flurry of active treatment has ended. For some people ‘active treatment’ involves surgery, chemotherapy, targeted therapy, immunotherapy, radiation therapy or a combination of any of the above. And, for some people, active treatment never ends.

For those of us fortunate to move into a status of NED (No Evidence of Disease), the thrill of finishing treatment is immediately fraught with fear and consternation: 
  • Now what? 
  • Will my cancer come back? Who is watching for my cancer to come back? 
  • Am I scanned frequently enough? 
  • Am I scanned so frequently I may induce another type of cancer? 
  • Everyone around me is so happy. Why am I so scared?

Every ache, pain, lump becomes a possible recurrence or worse, indication of metastatic disease.

Many survivors tend to live quietly with their anxiety but most all of us experience the same fears.

But three years later?

Three years later a headache is (usually) just a headache and not a possible brain met.

Three years later I don’t remember every monthly ‘cancerversary’.

Three years later I don’t wake up wondering if this is the last day I will be cancer free.

Three years later, I am in a much better mental space.

I am still relying on my safety net made of razor wire (i.e. Tamoxifen). I am still visiting the oncologist every six months to complain about said “safety net” and every now and again I run my own experiment on my drug protocol (this will likely need its own blog post to explain). Three years later, I don’t rely on my ‘rub on nipples’ to make me feel normal. I continue to struggle with the body image issues that most individuals with mastectomies struggle with and yet, in some ways, it feels like mastectomy or not, I am simply struggling with body image issues that most women struggle with – with or without cancer.

This makes me feel more normal.

I have aches and pains. Many of them are related to Tamoxifen but, in recent retrospect, many of them are likely related to getting old. Getting old. At 43, I may not be the conventional old person but I am getting old! And this is a good thing.

I can now imagine turning 50. I don’t feel like I’m jinxing myself when I imagine that in just a few years, my husband and I will launch our children into college.

Three years has been a turning point.

Three years later, I am in a MUCH better mental space.

Except when I am not.

In the last three years I have met literally HUNDREDS of cancer patients, survivors and caregivers. I have internalized their stories, shared their fears, connected them with resources and have hopefully given them some sort of comfort in their time of need. For some individuals, comfort is a hug; for others comfort is connection with others who understand what they are going through. And, for a select few, comfort takes the form of access to cutting edge research papers and clinicians who are willing to form a non-standard plan.

I LOVE what I do. I connect people to people, people to resources and people to knowledge. I teach people how to find their own “outside voice.” I teach people that there is no “right way” to go through cancer. And every time I empower an individual, I feel an equivalent amount of empowerment and want to shout, “Cancer has not won.”

Except sometimes it feels like cancer does win.

Three years in the cancer space has brought me face to face with the abysmal life expectancy and prognosis statistics with metastatic disease. Three years in the cancer space has brought me face to face with the very real challenges of access to care. Three years in the cancer space has highlighted HUGE disparities in research dollars across different types of cancer. Three years in the cancer space has brought me face to face with premature death.  

In the past three years, I have lost count of the people in my physical and virtual communities that have died as a direct result of the disease.

I swore I would never lose count. I SWORE it. But I have. Some weeks are worse than others.

And on those weeks I suffer. 

I question remaining active in the cancer space. I question whether or not I have the mettle to keep up the advocacy, the education, the support and the connection. My ‘err on the side of oversharing’ self, closes up not wanting to burden my own community, sometimes even my own family, with what I now see is simply a reasonable and rational need for support.

Back in May my friend Diane died and I wondered if I had done everything I could do to help her survive. I blogged about how the system failed her. But, in the back of my own mind and in my heart, I wondered if I had actually failed her. If I could have done more. And I have let it eat me up for over five months.

Three years does make a difference, and for the past five months, I have marveled at how, finally, three years post diagnosis I have simultaneously stepped into a better mental space about my own personal health and mortality and yet sometimes stumble into an incredibly deep well of despair about whether or not I can handle what I’ve gotten myself into.

And then I get another email, text or phone call. 

Another stranger-soon-to-be-friend whose hand I can hold either physically or virtually. Someone desperate to feel some semblance of control around and over their disease. Someone looking to connect over fears, hope or science. Someone just like I was three years ago. And I know damn well I can handle it.

Three years later, the landscape is different but the rule is the same: Cancer doesn’t get to win.

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.