Tuesday, April 21, 2015

Activist / Action

1. Activist

Why do we involve ourselves in causes?  I’ve been thinking about this a lot since the Hear My Voice Advocacy Training in which I was lucky enough to participate as part of the Living Beyond Breast Cancer Annual Conference for Women with Metastatic Breast Cancer a couple of weekends ago. For most of us, I think a personal connection to a cause motivates our action – having kids in school makes some of us activists on behalf of education; living near a Superfund sight gets people involved in environmental advocacy; having cancer or a loved one with cancer puts cancer front and center on our causes-to-work-on lists.  Some folks see a much bigger picture.  All anti-nuke activists do not live near test sites.  All anti-poverty activists are not poor.  All gay rights activists are not gay.  Some of us are inherently local actors and some, for whatever reason take a more global approach.  

After my treatment for early stage cancer ended two years ago the last thing I wanted was to think about cancer.  It was, I thought, likely behind me and I needed to MOVE ON.  I’m guessing many of us wore those get-me-the-hell-away-from-here shoes.  I did not want to dwell, certainly did not want to think about the worst thing that might happen (except that it did).  I needed to clear my psychic space of cancer as well as I could.  

Fast forward:  I have metastatic breast cancer and only now have the big picture of breast cancer in general clearly before me.  Part of me is loath to admit that only when I became one of the estimated 150,000 or so people living with MBC in the U.S. did I become active in the cause of realism around breast cancer and not the pink-tinted view that might be the only thing most people are “aware” of about the disease.  

Enough about me, already. Our training group (the first for this new LBBC program) consisted of 31 women.  The purpose was to become LBBC’s first group of trained volunteer advocates, the requirement in return being to organize at least two outreach activities this year. As I shared before, the oldest is 68, the youngest 24.  We were all ages in every decade between.  We were of different races, religious affiliations, and we came from all over the country.  In short, a good microcosm of the U.S. MBC population, except we were missing a man with MBC in the group. The thing we have in common was quickly apparent.  We are all doers.  Together we were a pretty raucous, assertive, opinionated group.  I smile often at my fond memory of the poor facilitators trying to get us quiet!  I wish we had more time together to share what we would each work on as our individual projects, but we are in touch on line and sharing those very things daily.  We have each other as resources off of which to bounce ideas both conceptual and logistical.  We have each other as supports and cheerleaders for the things we are attempting to accomplish.  We have each other.  

I was happy to learn more about the Metastatic Breast Cancer Alliance working with the incredible backing of the Avon Foundation.  I hope to put some of my more wider-world energy into advocacy with this amazing group.   In a nutshell, MBCA brings together researchers, advocates, clinicians, educators, fundraisers, pharmaceutical companies to hone the work towards finding more life-extending treatments with better quality of life for the many, many people living with MBC.  Hell, even a cure.  I attended a seminar on yoga and confirmed that not only are the psychosocial benefits proven with data from studies, but that researchers are indeed investigating the connection between intensive yoga practice and alterations to cancer at the cellular level.  Mostly though, being with the other women with whom explanations of so much can be left unsaid, with whom an unspoken understanding of each other just exists, was empowering, comforting, and in a good way, simple.  After a raucous dinner out, there was mutual understanding of the need to disappear and sleep.  We all hit our walls at one point or another, especially after returning home and having the high of being there slowly wear off.  

2. Action

I’ve always been more of a local than a global actor.  I’m inspired by Mother Theresa’s adage to “do what’s in front of you.”  Here in my town of 10,000 in a county of 30,000,that has taken the form of public school volunteerism and advocacy, work with domestic and sexual violence survivors, and now, telling the truth about breast cancer and developing opportunities for community members with MBC to know and support each other.  Within the parameters of working locally on my cause, I see the need to raise, no, CHANGE breast cancer awareness in my community to an awareness based in the reality of the disease.  I intend to debunk the myths of 1. Early detection = cure, 2. Early detection is always possible with regular mammograms, 3.  Late stage diagnoses = neglect by the patient to spot early indications of disease, 4. Young women do not get breast cancer, 5. Annual mammograms protect women from dying of breast cancer, 6. Buying pink products and event registrations help the cause of ending breast cancer, and 7. There is a way to prevent (and thus knowledge of a cause of) breast cancer. There are too many myths to debunk these days, partly because of the commercialization of the breast cancer cause.  As medical sociologist Gayle Sulik noted, “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources.  Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.”  

Breast cancer is not one disease.  There are subtypes, and within those subtypes each individual’s response to the disease and its treatment.  If you have a certain subtype of breast cancer and are treated with the standard of care for that subtype you may have a complete response (this is good), a partial response, or your cancer may not respond to the available treatment.  Active disease may stay at bay for years, months, weeks, or not at all.  Early detection is good for slow growing cancers and those easily seen on mammograms.  Lobular breast cancer is, by all accounts, sneaky and difficult to detect in its earlier stages.  Inflammatory breast cancer is aggressive and first detectable on the skin, making it at least stage IIIb at first diagnosis.  All this to say, breast cancer advocacy is WAY more complex than encouraging mammograms for early detection.  Additionally, regular mammograms are indicated for women starting at age 50.  While breast cancer is still statistically rare in women under 40, the number is growing and this population is more likely to be initially diagnosed with stage IV, partly due to the difficulty of having symptoms taken seriously at a young age.  A woman in my support group was diagnosed stage IV at age 34.  Her symptoms were feeling tired and a little more unusually full after eating.  Turned out she had breast cancer in her ovaries, uterus, abdomen, and the top of her vagina.  Outcomes are better if one’s axillary lymph nodes aren’t involved, but one can have little or no activity in the breast and cancer in the lymph nodes, just as one can have a large tumor in the breast and no lymph node involvement.  There is no formula, so my goal is to educate my community that the way to end breast cancer is by giving to metastatic breast cancer research, and research in search of more genetic mutations and the targeted therapies to treat them.

The other aspect of working locally is near and dear to my heart, and that is being directly useful to others in a tangible, quantifiable way.  To this end I intend to start and sustain a yoga group for people with MBC and possibly other stage IV cancers, given the small size of my community.  Yoga is a way to be socially and physically engaged in a life affirming activity.  Cancer is a lonely, isolating situation. I know this.  I have had days in which the only people I saw outside of my family were my yoga teacher and fellow students.  Taking this idea a step further, I’d like to combine the camaraderie and understanding that comes with being with others with advanced breast cancer with the proven benefits of yoga as a mind/body cancer therapy.

Finally, this year on October 13th (metastatic breast cancer awareness day), there will be a die-in here in Astoria, Oregon.  I know that others from my training group are organizing die-ins on this date as well.  We’ll help the global piece along with social media. I intend to offer an opportunity for a high school student to help me stage it as their senior project(not for the faint of heart!). Admittedly, it’s a mutually beneficial arrangement.  I need the help, as I’m pretty easily fatigued. And, the opportunity to involve young people, the school community, and the community at large in this project expands awareness exponentially and will hopefully swell the coffers of Metavivor, which directs 100% of donations to MBC research grants.

To whit:  There can be no prevention of or cure for breast cancer until we know its cause. We cannot know its cause until we know why the 30% of patients whose cancer metastatizes does so, be it initially, months, years, or decades after it is diagnosed.  We cannot learn this without direct and substantial funds, both public and private, dedicated to research on metastasis.  And we cannot expect this funding to happen until we force the conversation about breast cancer to change, one person, one community, one training class of advocates at a time.

Tuesday, April 14, 2015


Well, rats.  After an extensive search, I have to conclude I left The Notepad behind in Philly.  The one that had all of the scrawled references to things speakers said that I wanted to remember, the organizations I wanted to look into, and so on.  As little belief as I have (that would actually be none) in all things happening for a reason, I’ll go with the flow and improvise on the big takeaways.
I think I need to write two posts, today on the feelings I don’t want to forget before writing them down, and tomorrow on the more concrete.  The Hear My Voice advocacy/outreach training was amazing.  The 31 of us were a hard crowd for the trainers to rein in – we put to quick use what we’d learned, mobilizing for a die-in on Sunday morning whose message is hopefully spreading all over social media as I type. (A die-in is like a sit-in, a tried-and-true non-violent act of civil disobedience wherein people lie down rather than sit.) In our case we lay down to represent the 108 people that die daily in the U.S. from metastatic breast cancer. A horrific, amazing, fantastic, important experience. More on activism and outreach in Part 2. 
I’ve been thinking about grace since one of the keynotes at the conference.  Grace, for me, is the sum of conflict. For example, the above mentioned die-in – horrifying, and amazing. Both. Having MBC or any incurable illness creates a pretty sizeable conflict the instant of diagnosis.  There’s anger, devastation, grief on the one hand; on the other the desire, the absolute need to live without only feeling those things, to live with some measure of joy. I grind my teeth constantly since my metastatic recurrence.  Day, night, sleeping, wakeful, whatever – I don’t think I will ever be able to stop. Here in my jaw is all of the pain and anger, while I have to try every day to enjoy the day and the people in it. What is the alternative? The grace part is not the latter; grace is the conflict. Grace isn’t a “positive attitude,” it is the act of living daily (and nightly for the many insomniacs among us) with this conflict, grinding away in my jaws and teeth. There is no getting out of it for us, no solution. Grace. 

Don’t fret, I’m still an atheist.  I didn’t find religion, though the talk given by an oncology and palliative care chaplain spoke loudly to me. Back to that pesky little notepad I left behind, on which I jotted down a lot of things he said. Here's the improv. Eselun spoke of grace as the acceptance of being how you are, where you are, when you are.  He referenced the cult of positivity - the unfortunate misconception that caring for ourselves and others requires an unbreakable, rigid cheerfulness and positive attitude.  Not so much. He said: Acknowledge – Accept – Embrace – Own – Move On, or something like it (I’ll correct later with transcript of talk).  I like this better than the whole five stages thing.  I respect these stages and know they manifest themselves, but semantics are important to me and I’d rather think of myself as learning to acknowledge than as being in denial. That said, it is impossible, really, to fathom accepting or embracing any of this cancer crap.  Sitting in a room with over 300 other women with MBC whose ages span five decades makes me think, yeah right.  Again, conflict.
Grace: I had dinner with five fantastic women on Saturday night (it didn’t hurt that we found a fantastic Thai place at which to have it!).  Donna spoke of being absolutely unable to think about the past or the future any more, even the next day, the day before, the next hour, the hour before.  She said, “I’m having dinner with you all right now. I like it. That’s all there is.” 

Grace: The youngest person in my advocacy training group is 24.  Maggie was a ballerina with the Joffrey Concert Group in New York City when at age 23 she was diagnosed with Stage IV breast cancer.  (Google “bald ballerina.” You’ll find her.)  Doris, at 68, is the oldest.  I loved seeing them posing for pictures together.  I have no words for the concept of being diagnosed with breast cancer at 23, however, and the idea that this girl, five years older than my daughter, had a reason to be at this conference, is surreal.  My mind goes to a strange and blurry place when I think about Maggie.
I talked to another woman who found her cancer while nursing her baby.  She thought it was a clogged milk duct.  She started to cry and said, "At least I have my daughter." You can’t imagine how many young moms of young children were at the conference, young women for whom the option of having children if they wanted to is gone.  This is unfathomable.

I talked to a 30-something lawyer and mom of two who has taken early retirement.  In her thirties. I talked to the marketing guy for Living Beyond Breast Cancer.  He was an activist early on in the AIDS crisis, and believes that being heard and having research funded for MBC requires an ACTUP attitude.  Along with the social media guy for LBBC, he was an unquestioning help with the die-in logistics.  I talked at length with K___, a ten-year MBC survivor, who unequivocally told me to get ALL stress out of my life – it doesn’t cure cancer, but, she said, “I love my life.”

Finally, grace: the chaplain finished his talk with one of my favorite poems.  The fact that it is Lucille Clifton’s “Blessing the Boats” and not a well known or more widely disseminated work was a small, literal moment of grace for me.
may the tide
that is entering even now
the lip of our understanding
carry you out
beyond the face of fear
may you kiss
the wind then turn from it
certain that it will
love your back      may you
open your eyes to water
water waving forever
and may you in your innocence
sail through this to that
To be continued...

Wednesday, April 8, 2015


It occurred to me as I wrote the post below, I never did actually report that my scans in mid-March once again showed no radiologic evidence of disease.  This is not because it is not big and great news.  I suppose it's because, well, chemo brain?  General tiredness?  Not sure, but I'll report it now.

Special old-age-before-my-time bonus though - osteoperosis!  This is due to my abrupt chemo driven menopause, and steroids, of which I have taken my share.  Many of these steroids were alongside chemo infusions, but full disclosure, I have also taken my share for rheumatoid arthritis.  Yes, I'd love to blame cancer for everything, but for this one it's a hung jury.  I won't know what the tipping point was that got me to osteoperosis that requires treatment.  So, I'll be having an annual infusion of zoledronic acid (brand names Reclast or Zometa - I'll be getting the Zometa).  Terrifying possible side effects include the dreaded and horror-movie-named osteonecrosis of the jaw.  Apparently this one is more common when the drug is used more frequently as a treatment for bone metastases.

Anyway, happy news and per the phrase my husband's Aunt Sally coined for difficult traveling experiences, I'm Relentlessly Pressing On.

For my bff since the third grade

I was talking today to the friend above, and she wondered why I haven't been writing.  She is highly intelligent, and thus knew to use the ultimate tool - flattery - to tell me I should write more.  No excuses here, except lack of discipline and no lack of Breaking Bad episodes (Yes, it is my second time.  No judging please).  For now though, I had an aha moment.  Said friend does not like using "the facebook," so I knew I had a few little vignettes she had not read.  

As an intro for my social-media-averse readers, a woman in my support group started a social media campaign using hashtags (L, I hope you know what these are - hehe) to make the topic of metastatic breast cancer "trend," creating a very broad awareness of the disease.  She borrowed metsmonday from a fellow blogger who started the Monday posting of facts and feelings related to mbc and added multiple hashtags to enhance the chances of mbc hashtags trending towards the top on specifically chosen Mondays.  It worked!  The first time it did actually trend, which is an amazing result of how many people participated and shared.  And just in my tiny social media world, people have donated to the organizations I have mentioned. These have been my postings, including hashtags, so far. 

Tomorrow night I head to Philly for Living Beyond Breast Cancer's 9th Annual Metastatic Breast Cancer Conference.  Additionally I will do an all day training on advocacy on Friday with a smaller group.  I am excited to meet many of the women from my support group.  Many of us have never met in person, which is odd given the TMI topics discussed (constipation! diarrhea! highly personal menopausal symptoms for young and old! and, you know, the serious stuff like death and dying). These women are supportive, empathetic, knowledgable, hilarious.  I will report on what I learn and whether the more raucus of the group get complained about by other hotel guests.  For now, here are the short bits I've shared on Mets Mondays so far.

It's ‪#‎metsmonday‬.
With metastatic breast cancer there is no battle to be won or lost. There is no "fighting like a girl," which frankly just infantilizes and trivializes the experience of having mbc. There is the day to day staying as healthy as possible. There is science, that needs to catch up with us patients. And there is the opportunity to get money to those scientists wishing to solve so many of the mysteries surrounding this disease. There is making sure that whatever money you contribute to a cause you know and appreciate what it will be used for. For me, that is research and advocacy around metastatic breast cancer.  

It's ‪#‎metsmonday‬ again. Many of the over 1000 women in my support group had stage 0-2 intitial diagnoses prior to their metastatic diganoses. Many were beyond, some way beyond the "five year mark" and even "ten year mark" at which point cure is often assumed. Early detection without lymph node involvement is better prognostically, but is not a guarantee of a recurrence free life. And finding a lump when it is small does not mean one does not have lymph node involvement, nor does having no lump at all mean there are no cancerous lymph nodes. It is possible to have breast cancer without a tumor or tumors in the breast. Many of the younger women in my group and some older were diagnosed with stage 4 from the start. This is not because they ignored any signs, were "unaware," or did not do preventative care. All to say there is no scenario or step-by-step instructions for not ending up in my boat. There is much more randomness than one might think. So instead of giving to "Awareness" causes (I believe we are aware enough), give to causes that are looking for treatments, cures, and doing quality of life advocacy for metastatic breast cancer.  ‪#‎metavivor‬  ‪#‎livingbeyondbreastcancer‬  ‪#‎mbcn‬

It's ‪#‎metsmonday‬ again, and I'm kinda tired. Basically I always am. Treatments, even those that are not chemotherapy, have their own side effects. I am on infusions of pertuzumab and trastuzumab, two therapies that target the HER2 protein that drives my particular cancer. These can cause fatigue, muscle pain, runny nose, irritated eyes, diarrhea, nausea, vomiting, anemia, neutropenia, increased coughing, pulmonary toxicity, cardiac failure, bla bla bla. Nevermind the longterm effects of past chemo, surgery, and radiation. Basically I feel a lot older than I am, like twenty or so years older. I really feel for all the young twenty- and thirty-somethings dealing with this crap (and there are a shocking number of them). They feel older too, much older. Many have young children, or will never be able to have children, or are just getting started in careers and marriages. Still, I am so grateful for the research that brought me my drugs. I am grateful for feeling as well as I do, and I am grateful for continuing research and scientific breakthroughs that will give me and my metsisters more options down the road.