Thoughts from Under the Bus

 Did you read Peggy Orenstein’s piece in last week’s New York Time’s Magazine? The Feel-Good War on Breast Cancer. Seriously, read it. I know it’s long. It needs to be. Come back after you read and we’ll discuss. I’ll be here.

And about the bus…we’ll get there.

So Orenstein says, far more eloquently than I, something we’ve been talking about for a while now. It’s about Komen, it’s about pink culture, it’s about the ridiculous things we do “for the cure,” and it’s about the reality of breast cancer.

Orenstein’s story is stunningly similar to my own. Both diagnosed on a baseline mammogram at 35. Ours were both the lives “officially not worth saving.” We both underwent treatment and thought we had it in the bag. We both faced recurrence. Hers was local, I was less lucky. We are both still here to tell the story. We are both shouting it from the rooftops.

Peggy’s article is chock full of really important information, and there were a few standouts for me. You’ve heard me rant against Komen’s perpetual need to sprinkle pink sugar over this disease. You know the “mammograms save lives” crap is complete bullshit. You know how I feel about the distribution of research dollars vs. more “awareness” funding. We’ve talked about issues of over-treatment (more on that next week…tragic story). Like me, you know that 5-year survival rates distort our perceptions and that despite all our “advances” death rates have hardly changed.

That said, Peggy hit on some topics I haven’t addressed. I loved her discussion about what all this pink awareness means for girls. How this impacts the daughters of survivors I leave to the wise and insightful AnneMarie. But I have often wondered what it means as girls come of age. Just as they should be opening up to their sexuality, finding new pleasure in their bodies, they are forced to stare pink in the face. Breasts, both pleasurable and eventually nurturing, have become about death –  or at least the threat thereof. I thought MY generation had mixed messages about sexuality. Oy!

But about that bus…

There is a focus on vaccine research. Think of ALL the women who will be spared ever having to dance this dance if we can just come up with a vaccine, right?

Yeah…right.

Here’s the thing. If we don’t know what causes cancer, what are we vaccinating against?

(OK, let’s not ask the HARD questions. Hard questions are very pink, are they?)

Orenstein quotes Danny Welch, chairman of the Department of Cancer Biology at the University of Kansas Cancer Center. He’s clear. Speaking of vaccine research, Welch says, “I’d prefer to prevent it too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

He’s “dead on balls accurate” as they say in My Cousin Vinny.

According to data from 2009 (MBCN), there are about 150,000 of us living with metastatic breast cancer.

So I’m going to try to be clear.

Again.

VACCINES ARE FINE. It would be a wonderful way to get rid of this dreaded disease

VACCINES ARE FUND-ABLE. Who wouldn’t want to give money to prevent themselves from getting breast cancer. (Scare me enough and I’ll fork it over!)

VACCINES ARE ELUSIVE. I know, it’s easy to believe. Yet it’s very hard to deliver.

But hear what you’re telling me when you focus on vaccines to the exclusion of metastatic breast cancer research:

Rather than prevent death from cancer, I’d like to make sure I don’t get it.

The chance you won’t get breast cancer, or get it again, is what matters. Sorry you will probably die from it.

You’re expendable; this is about me.

There are organizations that want to feed us pink. Others seek to confuse “preventing metastatic breast cancer” with preventing death from breast cancer. We’re smarter than that. We know they are about helping everyone BUT the 150,000 of us who have, essentially, been thrown under the bus.

Here’s the good news: I’m stuck under this bus with some pretty awesome women. We are strong, we are clear, we are passionate, and we don’t care about the rules.

Who Owns Our Genes?

Such was the case heard at the Supreme Court this morning. I was honored to be asked to speak by rally organizer Breast Cancer Action. My remarks are below.

Good morning and thank you for being here! My name is Lori and I have breast cancer.

·      I am here today, to stand arm-in-arm with my BRCA sisters because we are all in this together.

·      I am here today as a metastatic patient and because every day for the rest of my life, I will live with this disease. I need every viable avenue of research uncovered, because if I live long enough, each treatment will probably stop working for me.

·      I am here today because we must stop trying to turn America PINK; and instead unite our focus on research, not ribbons.

·      I am here today because 40% of the human genome is ALREADY patented, denying information about our bodies and preventing cures.

·      I am here today because stumbling blocks on the path to a cure must, MUST be removed.

·      I am here today because lives on are the line.

·       I am here,  perhaps most importantly, because I am the mother of a sweet, smart, wonderful 14-year old son who deserves to have his mother see him dressed for his first date, help him choose a corsage for prom,  watch him graduate from college. He deserves to see my smiling through my tears on his wedding day. And breast cancer is slowly taking me away from him…

Today’s Supreme Court hearing will impact our ability to understand our cancer risk, as well as that of our mothers and sisters and daughters. It will determine our ability to make informed decisions based on reliable information. It will determine the path to new interventions.

Today’s hearing is about that, and about Myriad’s profits.

As it stands right now, not even my own doctor can examine my genes, and scientists can’t study them, so that Myriad can make money.

Because patents are about money – about the right of an individual or company to receive time-limited profit from their ideas and their efforts to bring them to the market place. Patents exist to spur expensive research and innovation. But when it comes to blocking access to our genes, patents do the opposite.

Gene patents block channels of research and restrict innovation. The BRCA gene patents exist at our expense so that Myriad can profit.

·      Does Myriad care that their test is too expensive for so many of us? NO

·      Does Myriad care that there are errors in their test – both false negatives AND false positives? NO

·      Does Myraid care that there is no verification test? NO

·      Does Myraid care that their test is outdated; that the science has passed them by? NO

Unlike most of the scientific community, where global sharing of pertinent understandings that can benefit the common good is prevalent, Myriad chooses to hide their BRCA discoveries, hoarding information that impacts our lives.

What else might be hidden in the gene code that Myriad controls?

·      Information for others who have strong family histories of breast cancer and are testing BRCA negative?

·      Additional help for us as we decide whether to amputate our breasts and remove our ovaries in hopes of saving our lives?

·      Information about other diseases and disorders?

And…if Myriad controls our genes, perhaps they should be held accountable when these genes mutate and malfunction. But of course that won’t happen…

I grew up in the early days of the feminist classic Our Bodies, Ourselves. I was taught that my body was MINE, that •I• made decisions about it. But with the emerging prevalence of gene patenting that is no longer true.

You can’t patent Laws of Nature. You can’t patent the wind, though you can a turbine; you can’t patent the sun, only solar panels. Are not our bodies the result of Laws of Nature as well? If not, then why stop at genes? Next it will be a blood, our organs…

We know the idea is preposterous. And we know that today is that day things can change, that this error can be righted, that justice can prevail, that his wrong can be righted.

Thank you for your passion, for being here, for standing together with us.

Be Heard: Send a Text to Congress – Rally for Medical Research

 

Be Heard: Send a Text to Congress – Rally for Medical Research

Medical Research saves lives – including mine, and probably yours.

Sequestration has halted a great deal of research, and may cause us to lose a generation of researchers.

PLEASE click above and let your Congress Members know what you think!

Someone you know ill? Watch what you say, and to whom.

Susan Silk and Barry Goldman

April 7, 2013

When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan’s colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn’t feel like having visitors, and she said so. Her colleague’s response? “This isn’t just about you.”

“It’s not?” Susan wondered. “My breast cancer is not about me? It’s about you?”

The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie’s husband, Pat. “I wasn’t prepared for this,” she told him. “I don’t know if I can handle it.”

This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan’s colleague’s remark was wrong.

Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie’s aneurysm, that’s Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie’s aneurysm, that was Katie’s husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan’s patients found it useful to tape it to her refrigerator.

Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings.

When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you’re going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn’t, don’t say it. Don’t, for example, give advice. People who are suffering from trauma don’t need advice. They need comfort and support. So say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” Don’t say, “You should hear what happened to me” or “Here’s what I would do if I were you.” And don’t say, “This is really bringing me down.”

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.

There was nothing wrong with Katie’s friend saying she was not prepared for how horrible Katie looked, or even that she didn’t think she could handle it. The mistake was that she said those things to Pat. She dumped IN.

Complaining to someone in a smaller ring than yours doesn’t do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don’t just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.

Remember, you can say whatever you want if you just wait until you’re talking to someone in a larger ring than yours.

And don’t worry. You’ll get your turn in the center ring. You can count on that.

Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of “The Science of Settlement: Ideas for Negotiators.”

via Someone you know ill? Watch what you say, and to whom – latimes.com.

The Beautiful Donna Peach

Two weeks of cooking, two nights of holiday dinners, and the jumbled mess of my kitchen reflects what’s going on in my head today, as I fight back tears.

Last night I was at a friend’s for dinner. Between courses I took a peek at my phone to find a bevy of emails about the death of our remarkable friend Donna Peach.

Regretfully, I didn’t get to know Donna as well as I would have liked. But what I did know was magnificently, sparklingly beautiful. The one chance we met in person Donna filled the room – which is particularly impressive when you consider the room was a sizeable outdoor farmers market. That was just over a month ago.

In an earlier post I shared the story of our last #bcsm-LA TweetUp and how I had run off to help someone get into the parking lot and find a spot. That was Donna. Initially she called to tell us that despite having driven an hour from home, congestion was so bad she and Marvin were thinking of turning back. I urged her to wait, and they were heroic in their efforts to make it happen. Eventually we figured it out, and I am so deeply grateful that they didn’t give up!

Donna slipped right into our group, listening, sharing, and expressing gratitude for the simple opportunity to meet each other. And she shared stories…of dancing, of writing, of her involvement in the cancer community long before she was ever a patient. I think it’s fair to say she was a true renaissance woman, trying on all kinds of experiences on her life’s path of discovery.

I have quietly followed Donna’s beautiful writing, watched as her soul sang out loud, listened to her wisdom. Her love of Marvin, of dancing, of life were a sight to behold. In many ways, she was my metastatic role model…and my life is enriched for having crossed her path. That afternoon my biggest regret was that I had to leave. Family called, yet I hated walking away. Donna had so much to share and I wanted to drink it all in. Yet I left her and Marvin to their meal and I headed home.

As a group we immediately made plans for our next meeting to be in a place that would be far more accessible for Donna – and each of us. I was horrified by my own insensitivity of choosing a location that created such challenges. I wouldn’t let it happen again!

Last night just before dinner another guest received an email that her sister is pregnant; so many happy smiles over the excitement of new life. The writer in me, at first, wished the story had gone the other way, yearned for the poetry of one life lost, another arriving. But life isn’t poetry – it follows it own chaotic rules.  Sometimes, some of us are wise enough to make poetry out of even the darkest moments.

Donna will be deeply missed by so many, but her light will forever shine through.

Dance on, Donna…

ms1 01-28-13 The Darkness Within

Reblogged from Expressions about cancer through poetry:

I, I am poison, the enemy within
Death, hiding in life
A faceless adversary lurking in molecular darkness
I live in bone and flesh
I live in blood and cells
Stealing light, stealing laughter, stealing time
The most precious thing of all
I feed on toxins and chemicals
The food you eat, the air you breathe
I feed on innocence and purity…

Read more… 241 more words

I am a Cancer Victim

vic·tim  [vik-tim] noun

1. a person who suffers from a destructive or injurious action or agency: a victim of an automobile accident.

2. a person who is deceived or cheated, as by his or her own emotions or ignorance, by the dishonesty of others, or by some impersonal agency: a victim of misplaced confidence; the victim of a swindler; a victim of an optical illusion.

(from dictionary.com)

This one is going to rankle some feathers, and I look forward to a brisk dialogue in the comments section!

So let me set the stage. It’s Monday night, #BCSM TweetChat. As the chat begins introductions are made. Since the majority of the group knows each other, quite intimately in fact, there’s lots of cross-talk: updates on health, conferences, journal articles, blog posts, etc. You can feel the sheer joy many of us experience in reconnecting and settling in to an hour of support, love and learning, with virtual milk and cookies at the end.

Now imagine you’re new to this group. I would guess that for some, jumping into the dialogue is a bit like daring to be the newcomer at a crowded table in the high school cafeteria. I know when I started in chat I was a bit unsure. I know, too, that many newcomers introduce themselves with a bit of trepidation, letting us know that they will be lurking – both negotiating the rapid pace and ensuring they feel safe are challenges.

On a few occasions it’s gone something like this:

“Hi, I’m so-and-so and I’m a cancer victim.”

Which is then greeted with some variation on:

“We aren’t victims here.”

And THAT is where I get bent out of shape. I mean, we’re not even talking about the labeling of someone else as a cancer victim, but about self-identification.

Virtual v. Real

From L to R: @regrounding @itsthebunk @crgonzalez @DrAttai @PinkLinkVicki @danceswithpens

< How fabulous is this group??

This past Saturday we had our awesome and too infrequent #BCSM TweetUp. It was wonderful to reconnect with old friends, meet new ones, share our recent experiences and build on our online connections. Each time, as I drive away through admittedly horrendous traffic I can’t help but think how lucky we are that the universe caused our paths to cross. And how VERY lucky we are to live in a city with a critical mass that enables us to meet!

So here’s how it goes…

The LA Farmer’s Market is a major hub of activity on any weekend (especially one as gorgeous as ours was), and so even scoring a table is a challenge. But we’re a persuasive bunch, and we managed to snag one. We straggle in, and bemoaning traffic morphs into gratitude that we are together. Once we reach a critical mass, it’s a bit like a family reunion…we pretty much talk over one another in our eagerness to get everyone’s updates.

The Antidote to Myriad & More

This is very much not my style! I like to do my research, make sure I’ve evaluated all angles, shore up the details, and THEN dive in with both feet. But today I don’t have time for that!

Last night my husband’s colleague Bonnie pulled me aside at dinner to tell me about an article she’d read in the local law journal. The room was crowded and I knew I wasn’t going to “get it” and so she offered to send me it to me. It just arrived. TWO amazing gifts from ONE amazing company: VIRATECH.

(Now, let’s hope that in my rush to share I don’t get this all wrong…)

Cancer.IM

First, a NEW social media site (still in beta) designed specifically for cancer patients. Think Facebook for the cancer patient, caregiver, provider…with content, support, and more, all among people who “get it.” You get the picture. Check it out:

(P.S. Let’s not lose sight of the fact that I just managed to get my first video up here! But I digress…)

Pretty exciting stuff, if you ask me! I’m looking forward to getting in on the ground floor of this.

But it’s not the most exciting part…

We talk a lot about changing the face of cancer research.

We need impact.

We need collaboration.

We need to reward taking chances over incremental change.

We need a new model…

The Antidote to Myriad

As many of you know, there is a Supreme Court case pending against Myriad Genetics in their effort to secure a patent on the BRCA 1 and BRCA 2 genes. There are all kinds of things to say about it, but let’s go with AWFUL and move on. (You can learn more here: BC Action on Gene Patenting). Imagine, a company that so badly wants to control progress that they seek to patent the genes we were born with. In fact, they just won a similar case in Australia.

Unfortunately I can’t link to the Daily Journal article because it is a member, fee-based site. But in the article author Kenneth Eade uses Avastin as a model of how progress is made in the world of heathcare. Last year Avastin hit $2.66 billion (yes, with a “B”) in sales in the US, and nearly $6B world-wide. It arrived in the US 16 years ago, and was first approved by the FDA as a metastatic cancer treatment in 2004.

Kade goes on to discuss what’s happened with your cell phone in the last 16 years. I can tell you, because the one I had back then was, I kid you not, sold to me as a phone/weapon. Remember this >

To what can we attribute the rapid explosion of new, creative technology at accessible pricing?

Open-Source Research. 

And that is what Viratech is looking to bring us – an open-source, collaborative platform for biotech. It’s modified open-source, as researchers will still be able to protect their intellectual property but connect with others to collaborate and even crowd-fund their projects, but ultimately it’s about working together in news ways, and I LIKE that!

So with guarded optimism, I have contacted the company, and I will share more as learn!

Cleaning out the Cobwebs

I must admit, I have been neglectful of late and it’s gotten a bit dusty around here. As it is wont to do, life took over. The cobwebs aren’t just virtual, though – they are metaphorical as well; it’s pretty dang dusty inside me head of late! So here’s a quick update of what’s been keeping me busy: