Leaps of Faith in Here Be Dust

I posted this on Facebook last week:

Broke in my new weighted vest by adding 5 lbs. and walking for 30 minutes on my manual treadmill set at a 10-degree incline. That was one good schvitz. :-) Adding the vest was my only treadmill change. Need to do one more week of the Better Bones and Balance program before I add it there. Osteopenia picked the wrong dude* to mess with.

* “Nor do my students believe that a dude must be a man, for a city woman as well as her husband can be a dude.” – Robert E. Knoll, “The Meanings and Suggested Etymologies of ‘Dude’,” American Speech 27(1), Feb. 1952, 20-22.

Since that post I’ve done another weighted treadmill session and two more Better Bones and Balance workouts, in addition to my workouts on a stationary bike. (I have been doing a Virtual Ride Around the Equator since Sept. 1, 2012, and continued to cycle through chemo and radiation. On June 11 I crossed the 14,000-mile mark, which put me at the longitude of Nagercoli in Tamil Nadu, India. But I now need to add weight-bearing exercise.)

My workout this past Saturday night came from dancing up a storm at a benefit for Citrus Aid, a foundation that helps cancer patients in need in my county. Citrus Aid is headquartered at the Robert Boissoneault Oncology Institute, where I received radiation and where my breast cancer and Creativity Heals support groups meet. I am very grateful for this facility, which many of us call our “home away from home.”

More recently, I have found a wonderful accompaniment to my quieter moments. Longplayer is a musical composition conceived and composed by Jem Finer and livestreamed from the Lighthouse, Trinity Buoy Wharf in the UK. Played on Tibetan singing bowls and gongs, it recently passed its fifteenth year of continuous performance. Its total playing time is a millennium. From the site: “The composition of Longplayer results from the application of simple and precise rules to six short pieces of music. Six sections from these pieces – one from each – are playing simultaneously at all times. Longplayer chooses and combines these sections in such a way that no combination is repeated until exactly one thousand years has passed.”

Especially when I am winding down for the night, this music is a wonderful send-off to bed. It also relaxes me during the day; I am listening to the livestream as I write this.

One thousand years. Talk about a long horizon, not to mention a leap of faith. The concept itself is comforting to me: that for all of the challenges inherent in keeping a piece of music playing for a millennium – including the survival of our very species – such a project has been undertaken and continues. Listening to the music places me subjectively outside of time, in an eternal moment. The music continues its slow and steady pace, note to note, sostenuto to sostenuto, ever evolving.

Monday’s breast cancer social media (#bcsm) chat focused on the Metastatic Breast Cancer Project. Writes Corrie Painter, “[W]e will reach out directly to patients across the country and ask them share a portion of their stored tumor samples, their medical records and their voice. From day one, we have worked with dozens of metastatic patients for their help in all aspects of the design of the research study. The patients and advocacy groups that we have been working with have taken turns at the helm as we gear up to launch this project. With their help, we have designed an online consent so that we can work with thousands of people with metastatic breast cancer regardless of where they live in order to empower ALL patients in this community to become part of the process of discovery.”

This is huge. Not only is there currently no cure for metastatic BC (the only BC that kills), there is no national registry for it. Consequently, we don’t even know how many people in the U.S. have metastatic BC, though we can try to estimate. According to the Dept. of Defense Breast Cancer Research Program, “We still do not know how to prevent recurrence and metastasis for any individual woman. An estimated 20% to 30% of women diagnosed with invasive breast cancer will have a recurrence and may eventually die of their disease.” Furthermore, although some beat the odds for far longer, “Median survival with metastatic breast cancer is 3 years, and there has been no statistically significant change in over 20 years.”

Some selected tweets from the chat transcript:

What we know about metastatic breast cancer (MBC):

“Women don’t die from the cancer in the breast, but metastatic breast cancer is a killer. That’s why research is so important” – @drattai

“We know that metastasis can occur regardless of BC’s stage at dx; it’s all about tumor biology.” – @abhuret

“Depending on source, I’ve read that only 2%-7% of all [breast cancer] research $ goes toward mets” – @elissa_malcohn

“We know that we don’t know how to distinguish those who will metastasize from those who won’t” – @regrounding

“[C]an happen at anytime! Mine 11 years after original diagnosis.” – @lgotl1230

“Awareness campaigns that tout ‘early detection’ as a cure are factually incorrect and a disservice to women (AND MEN)” – @abhuret

“We DON’T know how many Americans are living with MBC - we aren’t counted” – @regrounding

“No one survives metastatic breast cancer. It is terminal” – @uppitycancerp

“There are estimated to be 150-200,000 women and men in the U.S. living with MBC - but we don’t know the true number” – @nikhilwagle

“About 40,000 people die each year in the US from MBC. If you break that down, it averages 108 deaths every single day” – corrie_painter

“Also the ~40K deaths figure has been little-changed for decades.” – @elissa_malcohn

“Most upsetting is the notion that if someone diagnosed with BC mets many wrongly believe they didn’t catch it early enough” – @a4breastcancer

“Clinical trials are so important - and only ~3% patients eligible for trials participate” – @drattai

About the Metastatic Breast Cancer Project
(Many of us weighed in with questions and enthusiasm here. I’ve taken tweets just from Corrie Painter, PhD (Associate Director of Operations and Scientific Outreach at the Broad Institute of MIT and Harvard; angiosarcoma survivor, @corrie_painter) and Nikhil Wagle, MD (breast oncologist at Dana-Farber Cancer Institute in the Susan F. Smith Center for Women’s Cancers, and a genomics researcher at the Harvard Medical School and the Broad Institute of MIT and Harvard, @nikhilwagle). I have collapsed the tweets into composite statements for readability; see the transcript for full context.)

Painter: The #MBCproject is a group of genomics studies that focus on metastatic breast cancer. SOLELY ON MBC!

Wagle: #MBCProject is a new @broadinstitute/@DanaFarber research initiative to accelerate discoveries & treatments for #bcmets. #MBCProject will empower pts w #bcmets to accelerate research by sharing samples & medical info, no matter where in U.S. they live.

Painter: By reaching out to patients online we will be able to work with people all over the country regardless of where they live. Our goal is to partner with pts, conduct research & listen to their/your voice, pave a path forward by learning in both directions.

Wagle: Why start the #MBC? The key challenge in discovering new targets in #MBC is most tumors not available for study. Most pts in U.S. rec’v care at centers that don’t study tissue - so these tumors are NEVER studied.

Painter: The researchers @broadinstitute can turn old stored tissue into discoveries.

Wagle: In a few months, we’ll launch a website that will allow any patient with #MBC to sign up with their email and say “Count Me In.” The website will ask about 14 optional questions to help us get a better sense of your experience with #MBC. The #MBCProject movement will be ENTIRELY patient driven. So if you can spread the word, we can get tens of thousands to sign up.

Painter: We will have a website where mets & non-mets can keep up to date, spread the word, share what we learn together.

Wagle: We also have the wonderful support of many advocacy organizations that focus on #bcmets, helping to spread the word. There are two parts to the #MBC project. First, we are asking for ALL patients with #MBC to sign up and tell us about themselves & their experience w cancer. This alone will be hugely beneficial, and we will learn a lot about the #bcmets community. Based on the answers to the questions, we will start to answer focus questions to help develop new treatments for #MBC.

Painter: [F]unded already by private philanthropy, will expand w/more $, Decisions made by @Nikhilwagle & leadership at the Broad. [O]ur clinical research coordinator obtains copies of the MR, tumor samples & we do genomics. Pts also provide spit.

Wagle: Everyone who signs up will be considered a research collaborator & part of the team, & get regular updates on progress/discoveries. [A]s the project progresses, we will reach out to individuals who signed up and send an online consent. In time, we will send more. [T]he consent will ask for permission for us to go get a copy of your medical record and any “extra” tumor tissue that is stored.
Once we get the tissue, we will throw everything we have to analyze it — analyze the DNA and RNA every single gene in the tumor. Importantly, we will share all of the aggregated deidentified data with the world for all to learn from and make discoveries from.

Painter: [P]eople can email us at info@mbcproject.org, we’ll keep them looped in as we gear up.

Wagle: We view #MBCProject as a way for #MBC patients and the world’s cancer researchers to partner. This is the way we will end #MBC. [W]e’ve spoken to many other centers, who are supportive. [W]e will share all the data which makes this a win-win for all.

Painter: We want to design the “back to the world” info with all of you, SO many possibilities! The experiences from our colleagues at Dana Farber have been very +, almost all requests go. We want the pts to have 1st rights to major discoveries. And we NEED pts to help interpret.

Wagle: [E]mail us at info@MBCproject.org and we’ll answer any questions you may have. [Q]uestions [that will be on the website] are gender non-specific and men are equally included. Additional info will be obtained from med record. [A]s a researcher, I have benefited enormously from having an advocate mentor, Liz Frank, read my proposals & serve as my advisor. It is so valuable to have advocates as part of a research team - for designing research, for writing grants, for disseminating info.

Painter: I am 100% sure that pts need a seat at the table. Pts + researchers will allow a deeper understanding on both sides of the bench.

As a cancer patient who is not metastatic, I am thrilled that those of us who are non-mets can participate and help. As the stats currently stand, I and other non-metastatic breast cancer survivors have a 20-30% chance of becoming metastatic no matter what we do or do not do, no matter what our treatment is or was, no matter how many years have passed since treatment. You’d better believe I want to spread the word about this project.

“Hope” was the June prompt for my Creativity Heals group:

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Our vision board project for the summer is also underway. This is mine:

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