Mine has been missing for some time. Locked away from the outside world, stored in writing journals, and assorted notebooks. Told in my writing group at the cancer center, or read aloud to Connor. It is hard to share your voice – to open the heart, the soul. To expose ones vulnerability, especially during life’s most crushing times. Yet there is also power in doing so. A control over ones experience in how we chose to react to it, to tell it, to change the world with it. I suppose that is why I refuse to lose my voice again. Or allow someone to take it.
You see, last May on Mother’s Day– I shared the most gut wrenching part of this journey here. The choices and loss of fertility that comes with a stage IV diagnosis. I bore my soul, and my journey through the toughest decision of my life. Only to have a cyber bully repeatedly comment, on various days with the following,
- “I’m on your side but even if you could pull this off this is a baby without a mother. Eventually.”
- “Why do that?”
- “I realize you can but why would you do that?”okay…but the real kicker…
- “What are you doing? How can you do this? All these people have to come together to make this happen. Far from trivial. What the fuck are you doing? How many babies have to live without a mom before you get it? This blows. Grip it.”
I was speechless. How could anyone- especially a stranger not even connected to me or the breast cancer world- post such horrific things? Not just one time. Or two. Or three. But four separate occasions??
And sadly, it wasn’t just this instance of “bullying” but there several other times when what I have shared in this blog has been used to attempt to ruin experiences or to cause me substantial harm. For the last ten months I allowed these voices to silence mine. I kept my voice at a whisper. Communicating with my online community- with an Instagram photo, an emoji, or brief caption. Building to 164 character Twitter share or retweet. Yet not wanting to expose my heart and story through another blog. Yet more and more I am rediscovering my voice, its importance and the change that it can possibly bring for the better. Through advocacy training with Living Beyond Breast Cancer, fundraising for Metavivor, and most importantly pushing forward MET UP– my voice can no longer remain silent.
That is why I openly wrote a letter on behalf of MET UP to the National Breast Cancer Coalition (NBCC) after their call for suggestions for their 2016 policy priorities. I was sent a response by NBCC’s Executive Director, Fran Visco, that did not equivocate to any change for those living with –and dying from- metastatic breast cancer (MBC, also know as stage IV). Fran’s response said that their board members “care more about their daughters’ futures rather than their own”. A luxurious place to sit and elicit such a response, as it means that you were gifted the opportunity to have children, and that you will live long enough to see them grow up and possibly benefit from it.
In no way do I oppose this work to prevent breast cancer or prevent metastasis. To pave the way for a better future from anyone ever receiving breast cancer in the first place. For I have lived as woman without breast cancer, with early stage disease, now with advanced breast cancer and live with the urgency that metastatic cancer so greatly needs. I find it negligent for NBCC – or any cancer organization- to not include those that are losing the most from the disease- their lives.
Fran’s letter was not just her placating acknowledgment to my request to include MBC in the dialogue, but surprisingly also included an invitation to their yearly Artemis Project. An invitation that I am pretty certain NBCC didn’t think I would accept on behalf of MET UP, and RSVP that took our group sometime to decide on. You see the Artemis Project is NBCC’s two pronged approach to “end breast cancer by 2020”—something that they have turned into a tag line as “Deadline 2020”. However since NBCC’s Deadline 2020 inception in 2010, over 212,363 people have died in the U.S. from metastatic breast cancer. That is one person every 13 minutes.
No wonder we jokingly refer to it as “DeadBy2020”, and this number is only set to double in the next 4 years. The problem as we see it lies in the focus being on two ideas: 1) prevention from breast cancer and 2) prevention from metastasis. With no mention or investigation on how to approach the disease once it’s become metastatic. WTF, right? So, that’s means the biggest lobbying entity in breast cancer places none of their focus on ending breast cancer on those most crucially hit by the disease and dying from it.
Prevention is a great element to include in the dialogue but to not include looking at cancer once it is metastatic- it’s mechanisms, how it moves from bone to lung to liver to brain, the microenvironment of these cells and their proliferation, how we could create more life-extending therapies to turn breast cancer into a chronic condition like HIV- is completely irresponsible.
How can the National Breast Cancer Coalition ignore those with MBC? Even after being repeatedly approached by two metastatic organizations-MET UP and Metavivor to be included in the dialogue? (read the letter from Metavivor’s Executive Director to NBCC here!)
The other kicker about the invite to this meeting, is that it is held in Napa. That’s right— Napa. At a four-star resort, with Michelin rated dining. Let alone the cost of flying mainly East Coast based researchers across the country to San Francisco International, the costs were additionally racked up with individual town cars driving the extra two hours north to wine country.
Staying three nights at Solage, was an unneeded exclusivity for this meeting. A meeting agenda so packed that the location was irrelevant, as no one had time to enjoy it. Fine by this five-year sober Metster, but again made the expense obviously unneccessary. A researcher in attendance told me that it was his third year in attendance, yet had still never visited a single vineyard there. It was as though he had never been to Napa, and not sure why they even bother to have it there.
Perhaps this all seems irrelevant, but with the recent scandal of other non-profits mishandling donor funds for lavish expenses this really seems to resonate (i.e.- “Wounded Warrior Project Execs Fired After Lavish Spending”). I know that when I give to a cancer organization it is not with the thought of flying their staff first class to Napa, but rather to do everything possible to cut down expenses and make a tangible difference- each and every day.
Lavish costs are even more striking, when you consider that “only around 7% of breast cancer research funding is specifically allotted to finding a cure for metastatic breast cancer” according to a recent landscape report by the MBC Alliance (a collaboration of over two dozen cancer organizations to review the multiple issues of MBC…note here the NBCC is NOT a member). So with only 7% for research- every penny truly does count in this crisis.
A friend tried to ease my frustration when I vented to her about the Napa location, by telling me that wooing and planning meetings at destinations like this are important to bring the “best people together”. But I must argue that the absolutely “best people” are those that do not need luxury resorts with turn down service to inspire them to end breast cancer. They just do it. They do it because 113 of us are dying a day, and that fact moves them regardless of the thread count and spa amenities promised.
Sooooo, the members of MET UP were torn. We could have a seat at the table. In Napa. With a cancer organization that doesn’t recognize us in the first place. Or we could boycott them, and not have a voice at all. Before making the final decision, I had phone calls with directors of the two other major non-profits that focus on metastatic breast cancer, learning that one had never been invited to the meeting, and the other was an attendee in the past but not invited this year. With MET UP, as the only Mets organization even given a seat at the table, we decided that a voice, especially in front of the other participants, was better than having no voice or representation at all. So a mere four days after chemo, with my diaper on, and three neupogen shots in my belly off I went.
The trip alone to Napa was exhausting, as El Niño storms rocked Northern California that week with flooding, downed power lines, and fallen trees blocking the streets. After arriving nearly three hours later than planned, I dropped my bags at the front desk and headed in to the meeting where I was immediately flogged on either side by the meeting facilitator, and an NBCC board member (again, notice there is not a MBC organization represented…). I was told of how the meeting would run—a few presentations each day, followed by open discussion. No mention of ground rules, non-disclosures or privacy of what would be discussed. So, no problemo on my end.
We next moved in to introductions, and what brought each of us to the meeting. Of the 53 participants, only six had ever been diagnosed with breast cancer. Of the other six advocates, all were early stage and had not been in treatment for over 10 years. Around the room I heard, “I am a 16 year breast cancer survivor…” “I am a 25 year breast cancer survivor…” and so on. A wonderful thing for these women, but showed how far away they sit from the ever presence of cancer. From the urgency. From the pressing need to be an ally to those with MBC. These other advocates had not been through the rigors of blood work, chemo drugs, appointment, scanxiety and more for over a decade, let alone the four days since my last infusion. It was beginning to make sense to me that NBCC did not know my voice, because they had selected advocates that could not reflect it.
Not only was there no one else there with metastatic disease (or that had even been in treatment for 10+ years), there was no one of color – strikingly important as African-American women with breast cancer are 42 percent more likely to die from the disease than white women. With a thorough analysis by the Avon Foundation further showing that in some cities, like Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. What in the actual fuck!? And where is their representation at the table?
** and a reminder here, that when you here of someone dying from breast cancer, it is from METASTATIC breast cancer. It is only once breast cancer has left the breast, and spread to other organs is it able to kill you.
Also missing from the NBCC round table, was any representation of the small, but very real, number of men that are diagnosed with breast cancer. Men diagnosed with breast cancer also have a higher mortality rate than women who are diagnosed do. This is primarily due to awareness campaigns leaving men out of the conversation, thus they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment. It is often thought that these men are carriers of the BRCA mutation, which does give them a 1-10% lifetime risk of developing male breast cancer, ten times greater than the risk for men in the general population but this does not speak for the whole population of men who are diagnosed. It is estimated that only 5% of men diagnosed with breast cancer have the BRCA gene, yet there is so much with male breast cancer that we simply don’t know as it it is another under-researched and underserved group that is left struggling for recognition and research. Again, another seat absent from the NBCC dialogue.
It was as though the voices selected by were the whitest, most cancer-free ones they could find. Those “most privileged” in cancerland.
When it came time for my introduction, I not only myself and the work that MET UP does, but also really challenged them to think of the 113 of us dying each day, who are not discussed at this meeting. Who are not included in NBCC’s “priorities”. Nodding heads, silence, Then on to the next intro…and the next…till finally we were asked to share any “burning thoughts or ideas” before bed the meeting adjourned. Likening this to an AA meetings call for “burning desires” to hear from those in the most dire of circumstances, I raised my hand.
This time, with the microphone in hand, I asked the group to consider an additional portion of the meeting (adding, not subtracting from what is already being done) to focus on metastatic breast cancer. That as we scramble to create prevention strategies, it is negligent to completely ignore those dying from it.
That research on early stage breast cancer and prevention strategies does not necessarily translate to the metastatic setting- these breast cells are now in the liver, brain, bone, or lungs- and have a different response to those encapsulated within the breast.
That if we can work to eliminate the fear of death from breast cancer by extending life for those with MBC, then we will have resolved the biggest fear and worst outcomes from the disease. That yes, the treatment, and hair loss, and mastectomies and surgeries would still be horrendous, but by prolonging life, we could change the 33 month survival rate for those with MBC and change the perspective for all. That the scariest thing about a cancer diagnosis isn’t if my hair will fall out, it’s, “Holy shit, am I going to die?” And if we could change that, we could potential have a great shift.
My statement was again met with silence, yet on my way to my room that evening, I was thanked by several of the researchers for the comment, for the reminder. That the researchers know we need more resources, but that “research for MBC is complicated” and isn’t “an easy laboratory problem to show results or to solve so many researchers focus else where”. As I laid in bed that night, I was exhausted just trying to think– where do we even begin to fix this??
The 8 am start time the next morning came about 3 hours earlier then my normal wake up time on chemo weeks, but I rallied. Dressed in a work skirt, heels and tights that are now buried in my closet since going on disability, I headed in. Yet before I could even set my bag down or grab something to eat I was approached by another NBCC advocate in a conversation that was nothing short of bullying. With no one around, she went into a spiel how this meeting was not about metastatic breast cancer, and that it was not the space for “my personal agenda”. That this meeting was around the work of the Artemis Project and that if I couldn’t contribute to that work then I should consider why I came and if I should leave.
I responded calmly (I hadn’t had coffee yet), with the state of metastatic disease and offered to give her a copy of the letter I had previously submitted to NBCC stating MET UP’s needs and priorities. That this agenda was not “mine”, but the valid concerns of those in the metastatic breast cancer community who are being ignored by NBCC. I went on to say that I was the only person in the room with metastatic disease in the room so it was even more imperative that I gave a voice to our needs when applicable. She then fired back with one of my LEAST favorite things to hear from someone who has never lived through the slogging journey of MBC, “You don’t know if you are the only one with Mets. Anyone here could have progressed and just not know it, so you don’t know.” To which I replied, “You are right, we don’t know. But I do know that at this point in time, I am the only one here giving a voice to it. And the only one here dying from it.” Speechless she left, and I was able to finally able to grab coffee and try to eat, on what was already a long day.
As the meeting got underway, I started to “live-tweet” my experience. This is something that many of us with MBC do for each other as a way to share the information and slides with those that are too sick to make the trip, can’t afford the cost of travel, or were’t granted the limited opportunities attend. Many in the health community have taken to social media as way to share information with the masses, and MET UP had already implemented this at other meetings and conferences (the San Antonio Breast Cancer Symposium, the MBC Conferences by LBBC & MBCN, presentations at the medical institutions where we receive treatment, and more). It is important to leverage our tools of social media to deliver the information to those most in need of it, and also to use it as a means of sharing feedback- negative and positive. Never having been a problem at any event before- and without having any direction, as to NOT do this- I began to capture the general slides and info that were being shared (no CIA cancer secrets) and tweet them to my metsters.
But apparently my Tweets were not just being read by my supporters, but were watched by NBCC staff as well. At the lunch break , I was again pulled aside- this time by the facilitators of the group. They took me to a corner of the conference room—without the other advocates—to tell me that they were having a serious problem with my tweets. That some of the researchers had read them (extremely doubtful) and that they were in fear of (1) being criticized by me and (2) that their data yet to be published so it should not leave the room (p.s.- free the data!)
Furthermore, that I should seriously make a decision as to whether or not I even wanted to be in attendance at the conference. That I knew what the topic was before coming and that I was not to steer it off course with “my agenda”. That I should think long and hard if I could contribute in a meaningful way, and to not share anything that was going on outside of the meeting on Twitter or elsewhere. That I was to remain silent on what was happening and again, “not speak of my agenda”. It was quite the tag-team as they tried to strong-arm me into resignation, and my silence as I took in how insane this all was seemed to leave them even more infuriated.
Without a resolution reached, I went back to my room for some perspective, and to call Beth Caldwell– MET UP’s co-founder and a close friend- for feedback. Should I stay? Travel back? We can’t stay silent about things that we see as wrong, but we also want to show that MET UP and members of the MBC community can be professionals and work with the researchers.
So I thought to a story my friend Matt Sharp had told me about his work with ACT UP when they took on the FDA, that not only did they have protesters outside of the building yelling with signage and outrage but they also had someone at the table simultaneously. That this work doesn’t need to be done as an either or, but in tandem.
Fast forwarding this principle to the age of social media, Beth & I quickly figured out a plan. I would remain at the meeting. Staying present with the researchers, and their prescribed subject matter of prevention while those from MET UP and the metastatic community would use Twitter, and Facebook to “bang on the gates”. As I logged off my social media and returned to the meeting, Metsters took to their lines of communication and blew up #NBCC. It became a trending topic and gathered speed as the meeting went into #MetsMonday. Perhaps they could silence one of us, but there is no way that they could silence all of us. As our AIDS predecessors taught us, “Silence =Death” and although we may be dying at the same numbers of those at the height of the AIDS epidemic, we refuse to do so silently.
Sitting through that meaning, forced to remain silent was another reminder of how important a voice is. And even though I was quiet, as my friends virtually screamed and protested, I was able to sit at the table and walk away with new allies and connections at Harvard, the National Cancer Institute, the FDA, Dana-Farber, Vienna, and more. Let’s just say I must not have been too horrible or unapproachable while there– I have several new researcher Facebook friends =)
Were the tweets heard? Did it make a difference? At one point, Dr. Susan Love (who wasn’t too thrilled with MET UP’s advocacy we learned at SABCS) came to me and said “We saw the tweets…” and walked away. Not much of a response, but I’ll take it. I also encourage you to read through the tweets, our messages of protest to NBCC and post some new ones! https://twitter.com/hashtag/nbcc.
NBCC continues to ignore the metastatic community, and I suppose that they bank on the fact that we will be #DeadBy2020. Yet we are a growing number, and even as some of us die from our disease and are weakened by our treatment, I have now learned that we are a strong number that can collaboratively bang on the gates for change.
That all of us- YOU, the reader included- can challenge the organizations that are supposed to be representing us, lobbying for us, spending our donations, and push to see if the work is really being done. I ask that if you are involved in an organization that has signed on to support NBCC’s #Deadline2020 (you can look that up here), that you bring the letters from both MET UP and Metavivor to your meetings, to educate and rethink your support of NBCC. Perhaps letter withdrawing support would finally force them to make a change. Heaven knows that the thousands of my friends dying each year won’t, so perhaps a more public stand will.
So you see, my voice has finally bubbled over, as I return to weekly chemo and almost daily Neupogen shots to my stomach that cause intense bone pain that neither fentanyl, morphine, or for those in the know, Claritin can conquer. For as I sit week after week being infused. Accessing my port. I remember that I have a story to share . We- those living with metastatic breast cancer- have a story to tell. And I will raise up my voice, and use every breath to tell it until people like me are no longer going to weekly chemos, losing their fertility, and most importantly losing their life.
So I am putting my voice out there to fight against those that are not including MBC needs and research agendas. I am putting it out there to share what this journey is like. And at the risk of having Internet Trolls hate on me or to never be invited to Napa again- I have decided that I will not be silenced. We will not be silenced.
Join me & MET UP in lifting our voices on Saturday, April 9 from 6 PM – 8 PM in Philadelphia, following the LBBC Metastatic Conference. Activities will being with a Die-In to represent the 113 people who die of this disease in the US every day, followed by a candlelight vigil to honor our lost friends, and find solace in each other’s company.
Event information, and to RSVP here. If you can’t attend, but want to support MET UP’s advocacy effort we would love your support. We would love any and all media support, and have a press release available for the event.
Also we are in the process of finalizing our non-profit status (squeal!), and still in need of immediate donations for the 400+ candles, permits, posters, etc. If you are able to help with these specific needs (Kinko’s or FedEx for making larger banners, Amazon for candles and various other materials, etc), please let me know or donate through Paypal via firstname.lastname@example.org. Unfortunately, until we are approved as non-profit (SOON!) donations are not tax-deductible. Thanks in advance, and oceans of love xo
Also, please check out the MET UP Facebook page to stay up to date.