Tuesday, March 10, 2015

SXSW 2015

If you are not aware, in just a few days, I will be winging off to Texas to participate in the big interactive/film/music festival called South by Southwest.

I will be moderating a core conversation, along with Healthline's VP, David Kopp.  We will be discussing Finding a Cure for Breast Cancer - What Needs to Change.  This is supposed to be a free-ranging conversation with ideas and input from all audience members, so I invite you all to come share your vision for how we can create a world without cancer.  The War on Cancer as announced in the 1950s has not been a grand success and it is time to brainstrom a new plan of attack, and whether you are a researcher, a survivor, an oncologist, a family member or have never known anybody with cancer - you all have a stake in the outcome.    I plan to discuss what has gone wrong in the world of non-profits, and what has gone right in advancements (Herceptin/Perjeta) and what we can do to get more innovation in the world of breast cancer, perhaps with big data involvement.  Silicon Valley can tackle anything!

Whatever we talk about - I want you to be a part of it!

Our session is
When: Sunday, March 15, 2015, 5:00-6:00 p.m. CT
Where: JW Marriott, Room 201-202 – SXSW Interactive, Austin, Texas

I'll be attending keynotes and talks and hope to share some of that with you.  I'll certainly blog it when I return home, but for quick updates, like and follow my facebook page, and also follow me on twitter @butdocihatepink.  We'll be having a twitter party during the talk with the hashtag #BCCure so you can participate live!  Sign up here to get a reminder.

Are you in Austin and want to say hi but can't attend SXSW?  There is a Meet and Greet on the 14th.  Sign up to reserve your place. The room only holds 25 so sign up today!

Finally, if you have not signed my petition encouraging Komen and the major breast cancer charities to change course and donate 50% of their funds to something that will actually cure cancer, please do so now.  17% is shameful.

Wish me luck as I travel for the first time in years!  I don't know how my body is going to hold up to it all but I'm very excited to have the opportunity to be a part of such an amazing event.

See you in the Lone Star State!

Saturday, March 7, 2015

RIP Lisa Bonchek Adams

I've been gone all day today, volunteering at the regional Science Olympiad, an event I've been involved in for years.  I thought about cancer a lot today, recalling when I was a bald mom on my first chemo, whose child was a participant. As I relived those memories and thought about how long this road has been, I was dismayed to realize that somewhere on campus this afternoon I had lost my diamond "cancer" ring,  the one I'd had to rebuild, the one that was supposed to represent triumph over disease. I've lost so much weight that the ring was loose.  I drove home, angry at myself for wearing it anyway.

When I got home, I discovered the news that Lisa Bonchek Adams had passed away

I'm shocked.

No, I'm devastated.

I'm full of sorrow for her family and loved ones.  I'm heartbroken at the thought of all she had hoped to do and should have been able to do and now will not.  I know the pain her family feels is unfathomable, not softened by the fact she was ill first.

I'm also weeping for our community, the metastatic community.  We have suffered a great loss.  Our unofficial leader was Lisa, who was able to connect beyond the cancer community.  She described the horrors of metastatic cancer unflinchingly, and in so doing, she caught the ear of of the public.  It is so hard to get people to acknowledge us; our story is ugly, we are not the survivors the world wants us to be. Yet she managed to be heard.  On twitter, she was followed by the healthy, by the sick, and also by the media.  She was our public voice, one we desperately need in the relentless perky face of pink.  Once, a cancer-shaming op-ed was written about her in the New York Times, an event that caused an online ruckus - and which taught many more people about mets.   Because of her and her charisma, people learned.

And now she is gone, like my ring, like those days of my thinking if I could just endure cancer treatment a few more weeks, it'd be over.

Metastatic cancer, it takes everything.

Unbelievably, I was talking about Lisa just yesterday.  Somebody was concerned about her, as we all have been, and knowing that I'd been very sick too, asked me a question.

"Did you think Lisa will be okay?"

I only know what she shared online. Although we knew of each other and talked privately on a couple of occasions, we weren't close friends, so I didn't know more than any other reader.  I knew her health wasn't looking good but she hadn't given up. She was still posting from time to time, in fact, had done a blog post on March 1st.   She always admitted when things were hard but she didn't seem to be stopping treatment and was not, to my knowledge, in hospice.

So presented with that question, I thought of people I know - people who have been terribly sick, as she was, and who pulled through. I know people who have paracentesis regularly and are doing well.  I know people who had mets all over their liver and still got to NED, and I know people ten years past brain radiation.

I also know people who haven't made it.  Far too many.

My response was to share the good stories, and then I went on to say this: in the larger sense, in the meta sense, I thought Lisa would be okay.  Having been very ill myself, I think many of us are able to get to the point where we accept our impending death as reality. Clearly, we don't want it, we push it away, we want to live, we don't want our families to be without us. But we can face it.  At some point, anger fades.   We  understand that the world goes on without us, that things end up okay for our families even if we aren't there. We know that the sun shines, hummingbirds sip nectar and our loved ones will smile again -  even after we are gone.

I got to that point of acceptance.  That doesn't mean I gave up treatment or trying to survive or doing what I could to get another day, week, month.  It just means that I relinquished control and felt peace.
I can't imagine that Lisa, with her fierce determination to look at this experience head on, did not get there too. In fact, her most popular tweet demonstrates she did, "Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere"
Cancer is not okay and what cancer does is not okay.  But a person living and dying of cancer?  We can find the beauty, we can be okay.

What can I say to mourn this woman? I didn't know her well, my loss is not a personal loss.  She leaves,  however, a deep and wide chasm of emptiness.  Her voice can never be replaced.   I want to scream into the abyss - why take Lisa?  Why now?  Why, why, WHY?

Of course, I understand there is no answer.  Metastatic Breast Cancer is a cruel, malevolent beast.  It steals who it wants,  takes them prisoner, tortures them,  then kills.  Still, women like Lisa are able to transcend the hell they are in and find purpose.  She has been an amazing teacher and documentarian of an ugly experience, and in enlightening others, she left the world a better place.  She inspired thousands of women with metastatic cancer to live in honesty and without anything hidden behind a garish pink bow.  We metsters can follow her lead.  In so doing, we can keep her legacy alive and allow her voice to continue to ring loud and clear.

I give my love to her family as they learn to deal with this tragic loss. I hope they can take comfort in how influential she was and how many people admired her.

RIP Lisa.