Boobs On Ice™

How the Peapods Came to the Hermit and How You Can Help

    This video http://www.facebook.com/video/video.php?v=24061806261&ref=nf is a quick snippet of the Frozen Peas campsite in Second Life as part of this year's Relay for Life virtual fund raising event sponsored by the American Cancer Society.

Team Captain Joyce Bettencort writes:

"The theme this year was 'Heroes' and to a lot of us in the online, social media scene Susan Reynolds, her personal fight with breast cancer and the warmth and courage of sharing her experiences with us, has made her our hero. Because of that, several us, with Susan's blessings and help put together a team and campsite for this years virtual relay event."

The virtual relay walk and events starts at 10AM (PST) this Saturday the 19th and you can walk with us and visit the campsite in SL at:

http://slurl.com/secondlife/Heroes%2010/115/95/25

To donate to the Frozen Peas team go to:  http://tinyurl.com/6czpxl 

And find out more info on Susan and the real life Frozen Peas on her blog site: http://boobsonice.com/

Note Joyce & other Second Life Pea-funders came up with this idea & jumped in with no input from me other than "sure you should do it" Not only did I have no idea what the theme was to be I'm not sure anyone did. Now though embarrassed to be called a hero,I thank them from the bottom of my heart. Most people don't know that since my second surgery in June, this time involving multiple lines of stitches all across my chest, things have been beyond difficult. In the month since the surgery my incisions have still not closed. Yes, that's painful in may ways and it has my emotions raw and often depressed. I've become quite the hermit. So an idea of a second Life campsite visit has been so emotional an idea for me - well I just couldn't bring myself to do it. For the second time this week I had to say I couldn't do something - and all because I knew I'd fall apart when I saw it. I knew I'd be in tears at their talent & generosity. Instead they brought the peek to me through this video and I'm more touched than I can say. Please help me thank them by giving your support on Sat July19th in the relay for Life. If you can sign into Second Life and Visit the Pea Team campsite at http://slurl.com/secondlife/Heroes%2010/115/95/25 it would be an honor. And if you'd like to make a donation through the website at http://tinyurl.com/6czpxl  Super! Thanks to all who helped in Second Life & previously. I am deeply grateful & profoundly humbled.                   Susan - aka Tynan Clary in Second Life

   

The Pea Fund and the Kindle Pipedream

The new Kindle looks cute in pink - but not cute enough for me to want just because it's a nifty color. And the fact that along with lots of cancer patients I can't afford one now doesn't mean I don't want the first generation kindle as is, whatever color.

But when I hear about the new technology in the model coming later this year I might have to hold that thought of voracious "wanting" in the here and now. Should I in fact be thankful that there's not the money in the cookie jar for this extra?

Maybe. because allegedly the new one is even better. The last issue is will the price stay the same or might it drop as did the iphone? That could make all the difference.

On the other hand Amazin' Amazon could come up with a pea green model and donate some to the Frozen Pea Fund for patient use. I'd have to try it out wouldn't I?

Or so what if it wasn't green. What if it was just a Kindle with a sticker to show that we have friends helping us stand up against cancer.

Ah, now THAT would be a brilliant use of web 2.0 and the social media space inside all our heads. Patients do sit around at doctors' appointments and have a lot of down time in general. What could be better than having a kindle to keep us company and in touch?

And what could be better for Amazon than to have a Kindle in hundreds of hands in hospitals and doctors' offices and cafes and - well spread across the country? Which all goes to show that I may be sick but my brain's not dead yet.

More important however is this question. Who's going to pitch this at Amazon?

The Power of Peas and Five Finger Shoes

There's not much that's comfortable about the whole cancer ordeal but when I saw another blogger talking about these shoes last night on twitter immediately the thought hit me that if a patient wore those shoes at least one part of them would be comfortable. If it were me, I might have a hard time taking them off.

Here's what occurs to me.  Does wearing fun comfortable clothing and footwear make a difference to cancer patients?

As a founding Board member of a cancer charity called the Frozen Pea Fund I see our mission going far beyond the initial large amount of money we raised that went directly to the American Cancer Society. I see us asking questions like this and helping to get answers about patients' comfort and outlook.

After all: Frozen Peas Relieve Pain

Since we have incorporated and become a non-profit we have made it our mission to help cancer patients in NEW ways using creative thinking, new technology, new media, and we hope for inspiring new results. So this "comfort" thing seems right up our alley.

Oh I know we can't prove that five finger shoes or other fun, comfortable wearables cure cancer but it has been shown that mental outlook is responsible for more than 50% of a patient's chances of survival!

BUT - I personally can't imagine looking down at my feet wearing these shoes and not feeling a GOOD emotion - thus releasing endorphins and all kinds of other good stuff that would help the busy T-cells get together and do the nom nom nom on the pesky cancer cells.

So to me that's now part of my mission in life. I want to try what I can, and share as I learn.

Frozen Peas are More than a Fund Raising "Gimmick"

Frozen Peas relieve pain. They can be applied to any spot that hurts. Though giving to the Frozen Pea Fund can help us do good in many ways large and small, helping cancer patients in personal and global ways the concept is a simple but far reaching one and involves much more than clicking an icon to donate.

It's a bigger concept than that - and involves your actions

• It happens when you know information that could help cancer patients, and you share it because of the Frozen Pea Fund.

• It happens when you have a contact you share because the Frozen Pea Fund brought a need to your attention.

• It happens when you send a gift certificate for meals to a cancer patient because you are reminded that was even an option that someone across the country could do.

• It happens when you look up a resource for massages in another area of the country & gift a patient you know, just because the FPF made you aware that might help

• It happens when you set out a fishbowl at your next tweetup, talk about the concept of frozen peas reaching out to the community, and asked for folks to throw in a few dollars to help someone in your area or the FPF in our mission.

• It happens when you drop off treats at your local cancer center to thank staff for the work they do.

Frozen Peas Ease Pain. Think of the good that you could do multiplied by a hundred of us, or a thousand of us.

So this article isn't as much about shoes as it is about sharing?

BINGO!

Although I'd like to try the shoes, wear them at the hospital, talk about them to staff, discuss with my contacts at other medical centers, and help other patients try five finger or other shoes to see if they could provide some comfort  . . beyond that, I'd like to see Vibram participate with the Frozen Pea Fund in experimenting to see how this small bit of fun might energize a cancer patient in a small way.

But this goes far beyond that little brainstorm

Like pesky little frozen peas rolling out of a bag and scattering to all corners of your kitchen, the Frozen Pea Fund provides an unlimited number of tiny sparks of ideas, one of which might land in your lap.

Please be open to those sparks. Tell us about them. Talk to others about them.

Consider the potential energizing and feel-good benefit of thinking outside the box - or bag - of frozen peas.

Frozen peas ease pain. Let's make that happen in little ways and big ways.

Green Peas, Black Eyed Peas: Decisions and Directions

Most readers of the blog know that I spent the end of last week in beautiful sunny Austin Texas, meeting with representatives from the American Cancer Society along with my husband and partner in all things Bill along with good friend, the Frozen Pea Fund fairy godmother, Connie Reece.

I appreciate the confidence in the Frozen Pea movement that the national ACS office showed in sending a reresentative to meet with us to discuss how what we do could benefit them. At the end of the day however, being tied into a Frozen Pea Fund season and the other suggestions we were presented with didn't seem to fit in with the innovative personality of the forward thinking early adopters who have grown the pea fund so quickly over the period of ten weeks.

So before close of business on Friday we filed incorporation papers for the Frozen Pea Fund in order to continue to do the kind of communicating, outreach, funding and community building that my friends and family agreed were important.

Too tired from flights, meetings, decision making and paper-filing to go out and celebrate, we did manage to put together a quick frozen pea fund video, propped up in bed as if we had spent a relaxing day there. That was the furthest thing from the truth but it took my mind off being so exhausted, and communicated to our friends at least the highlights of what was happening.

The next hurdle was ever leaving that bed. Eventually hunger won out and my husband and I decided to take a walk down memory lane with a visit to Black Eyed Pea for a late dinner.  And while it isn't the same in 2008 in Austin as it was when the kids were growing up and we used to go to one in Herndon VA sometime in the late 1980s I had a good salad and didn't have to do the drive-through burger thing.

As in all things however, we do move on and changes happen in both people and institutions as well as restaurants. We are learning that in the Pea Fund as we learn it in other life experiences. There are up-sides and down-sides in cancer, in life, in where we eat and in decisions we make about the future.

I'm now a green pea person perhaps.  But I hope our Black Eyed Pea video makes you smile.

From Tiny Bits Come Connection and Community

Tuesday when it became obvious that this was not going to be the week I'd start chemotherapy I was relieved. I didn't have the throwing up to wonder how I'd get through. But I had yet another week - maybe more - of uncertainty.

Considering the kinds of stuff that's been happening surrounding testing, it's not all that surprising that the stars were not aligning for chemo.

And honestly - I don't want them to if I'm telling the truth. I keep thinking that something will happen that will change my equation in a way that means I get to keep my dignity, my hair, and my lunch.

Next week more tests, more doctors. more stress, more overwhelm.

In the meantime, I look for the silver lining in my situation. I'm blessed and don't have to look far for good in the bad.  I run right smack into the Pea Fund.

This tiny idea of asking people to take time out of their Fridays to donate the cost of two packs of frozen peas to help fund cancer research began as a tiny spark during conversations between a handful of internet friends who wanted to reach out and do something in my name after my breast cancer diagnosis. 

And today - two months after my surgery date and the first Frozen Pea Friday, there's no denying that the Frozen Pea Fund is growing into something more than anyone ever anticipated.

It's a story of bit by bit.

And it happened because of some remarkable people who see what one to one connections and commitment to conversation and community have achieved in a very few weeks AND who see the potential in helping us achieve more.

Earlier this month the developers of ooVoo and their advisers at Crayon took what I thought was a remarkable step.

Without being asked to help, they recognized the power and potential of the connecting and community building that the Frozen Pea Fund by providing our first corporate sponsorship. It came as both an overwhelming honor and a great surprise.

Since then their personal interest in my well being and willingness to work with my limitations have demonstrated that there is kindness in the world that surpasses my experience.

So the frozen pea fund has gone from a handfull of internet friends gathering around to add avatars to cheer me up to an entity that is finding support from more people and more groups every day. It's appropriate to be in awe of people who have the foresight to know that this is the kind of support for patients that can also turn into something powerful in the research world. Count me in that column.

We're Protected By Cool PEAs

When I read information that shows how much community and a sense of connectedness can decrease recurrence of cancer, I start to think of all those cute little pea avatars I see online every Friday. When I had my biopsies those cool little peas stuck in a baggie in my camisole all huddled together in my cleavage, conforming to the shape of my breast, protecting it and bringing me cool comfort.

Face it - there's an analogy here

Just like those comforting, calming frozen peas in my bodice, what the pea avatars have come to represent are hundreds of virtual strangers who have come together to help me keep my cool on my walk through the cancer maze. It's a beautiful thing

Over the weeks since that day in December 2007, I've discovered more and more amazing caring people in the virtual community who don their pea avatars on Fridays - and increasingly I glimpse them on other days too.

More than words or gestures

These people have nothing to gain, but they provide me and other patients with a sense of community, of virtual support, that is absolutely invaluable to us.

We may not be able to measure how long we stay cancer free because of the support of our all those cool frozen peas surrounding us in our communities. We may not be able to measure our love for those people who have never met us and still reach out in many ways to us every day of the week.

But I can point out that I recognize that they help in real, identifiable ways, every single day.

And I thank them from the bottom of my heart.

graphic representation of connections in online communities above from orgnet community where you can learn more about community

Pea avatars complements of the Frozen Pea Fund Flickr group

Can Today Really be the 4th Frozen Pea Friday?

Peas, Breast Cancer, and A Case Study by Michael Allison

Michael Allison is a young man with a grasp of what works in the world of communication. and more important, he's got a handle on why it works, as he proved today when publishing: Frozen Peas: A Case Study Young Blood PR.

He talks about the Frozen pea phenomenon on Twitter, and my interaction with multiple groups of people who  have become involved in an amazing grass roots campaign of awareness and support for the breast cancer cause. Among his observations:

"... breast cancer has a relatively significant public awareness. It is very likely that any given person within any of these communities has been touched by the disease in some form or other."

"Accordingly, the large numbers of people with whom Susan interacts day-to-day aren’t blank slates waiting to be told what to do (as the bullet model states), but genuine friends who feel emotion toward one another.

Michael contends that it is Twitter which serves as the catalyst application for this case of remarkable interaction and communication, astutely observing that

"Twitter acts as a sort of stream of consciousness between groups of asymmetrically reciprocal followers. . ."

"Twitter, or similar critically-massed application, is valuable and can convey meaning to communities that can affect real-world change."

I can tell you that from my seat Michael has it just right. Twitter has changed my consciousness, or what passes for it these days. And I've seen the change in others. When I talked with Tris Hussey and Jim Turner on the phone yesterday they DID feel like genuine friends.

Now Don't Get Scared!

I'm not implying that twitter is some kind of scary futuristic group-think, but it does pass information lightening-fast and makes it easier to come to the relatively quick conclusion like: we have to do something for that family of the young mother killed in a car accident or the guy who lost his job in such a nasty way, or yes - even the woman with breast cancer who is scared and in need of a hand in friendship.

I'll never forget it, even if twitter is pasee' in a year or two it will always seems to me like a breakthrough in communication that happened at just the right time to do tremendous good for me. Now I am never surprised when it enables people to do great good for others.

In Conversation With Community: Boobs in the Washington Post

Today the Washington Post ran an article - How Frozen Peas Started a Movement - about my experience with cancer and how the virtual world of people on the other end of computers all over the world have felt somehow moved to reach out to me. 

What does this mean to me, to someone with cancer, to have others walk towards me instead of away? Approach me with interviews, blog posts, interaction on twitter and more?

It's not a cure. But can it help ease the pain, the worry, the doubt?

In some ways of course not, but in other ways I'm reassured, and most of all I feel a supportive wall of people at my back - and distraction from the pain when it's not relieved by traditional medications.

It also means a lot to me just to have people talking. I only found that out after the fact - when people started interacting with me and with other people not just about their support but also about their experiences.

One of the most surprising facets of this for me is that men are talking to me about cancer more than women.

Maybe women already have people to talk with about boobs - or other delicate topics. But it's most often men who tell me about their mothers, sisters, grandmothers, aunts, daughters, wives struggles with breast cancer or other less well known cancer.

For the most part it sounds like they haven't really communicated this information to anyone before. And most of the stories are things that have really impacted them on a personal level.

I guess its true - it's hard to go to work and chat up your coworker on the topic of your aunt's wasting away with breast cancer - but that is something I hadn't thought of before.

What have I concluded from these conversations?

Rather than suggesting we need to have special programs to get a man - or anyone - to join a group or move too far outside their comfort zone, I  would like to just start the conversation with anyone who will listen and maybe talk back or talk to someone else about the issues surrounding prevention, diagnosis, treatment and finding a cure.

I hope that I can simply let these all people young and old, of whatever sex, know that we do appreciate them mentioning that they had an experience with cancer. I hope to remind them that just speaking about it a little - one sentence even - has potential to do good. To encourage a new patient to discuss more, to ask questions. It reassures that someone understands at least part of our story.

Their words might get someone else talking, and thinking, and remembering that they wanted to keep up to date with cancer signs or symptoms like this excellent article from the American Cancer Society, or to do a self-exam.

But how do we use this information and the ability to draw people out and encourage them to communicate?

I don't know - this is all really sudden for me so master-plans or long term strategies are hard to come by.

For now I'm thinking it needs to be part of my mission statement down the road when I get that far. For now it's good to file away and remind ourselves in the future that we want to make sure to keep the issue of encouraging communication on the table, however that happens.

I hope you will help.

• digg the Post's Frozen Pea article
• follow me and communicate at twitter
• contact / send kudos or more information to Post writer Craig Colgan
• check out what's happening with the amazing group at the frozen pea fund
• keep talking, keep asking questions, keep writing
• keep the faith that I'll get through this and so will people who are close to you

2AM Is Getting To Be a Theme - But Oh What a Day

It's 2:30AM and I'm about to go to sleep. I can pack my bag in the AM, leaving one more way for me to be in denial. The cat threw up on the bed just now so I know things are normal in at least one way.

It generally takes a long time for my posts to come together. I'm not a blog and run type woman apparently. In fact, the last time I ran may have been in 1995.

Admittedly my 6'3"son was here today and after doing a great job of being in charge of logistics all day while daughter 3 played my emotional-sidekick, Sgt. Reynolds was now distracting me by playing his entertaining role, asking unanswerable questions like a perpetual five year old.

He knows how to make me sputter and smile at the same time.

"How do people explain alligators if there were none on the ark with Noah?"

By the time I even began to address that, he was onto "Shouldn't there be a home test to see if you have diabetes - like a home pregnancy kit?"

(This went on. And on. He thinks in strange and mysterious and prolific ways. Or maybe the apple doesn't fall far from the tree.)

Meanwhile I've gone back and forth thinking about another topic all through the evening.

After my hospital visit yesterday in preparation for the big day today - - after meeting with Jim Long (twitter's @NewMediaJim ) and talking about what Social Media means to me - -  after seeing the pea fund suddenly appear as a working breathing thing a minute ago - - what could I even begin to say here?

It's a harder question to answer than the one about the alligators.

How do I tell you about the week I've had and how stunned I am at the response to my sharing my cancer story?

• It's impossible to list the wonderful people who have put PEAvatars on their twitter pages or made seesmic videos.

• I don't have any idea who all the people are who have uttered or blogged about breast cancer, Boobs on Ice, the grassroots Frozen Pea fund.

• It's impossible to count the people who have done something small and meaningful for me or made big grand wonderful gestures.

• How can we show our gratitude to you who have been supportive or helped someone behind the scenes?

• What should I say that could possibly convey how heartening it has been to feel all of you with me?

I just can't. But at the same time I know that you know that I feel all of you out there pulling for me, making me smile.

I love each of you. Prepare to be hugged repeatedly when I see you.