Boobs On Ice™

Quote: Connections Count

"A social connection for breast cancer survivors dramatically improves our quality of life and is shown to reduce recurrence."

Betty J. Borry Breast Cancer Retreats

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

Your Support is Vital - the Personal Story of Breast Cancer

When we survive - When we go through this process of being diagnosed with a serious illness and then we come back from what we think of as a cliff over which we might tumble at any moment -  When we move through that or back from that or away from that - we are changed.

Some of us have a new sense of purpose. Some are simply grateful. But the experience can't hep but give us a new perspective because not have we confronted our mortality but we're seen how we and others have reacted to that.

Some of us suddenly -or perhaps more often gradually - see with new eyes. Andrea Ottaiano who survived breast cancer says:

"Most people never get to see how many peoples' lives we have touched, because it usually comes after life, at our own funeral.

"I got to see my Mom, my Dad, brother, my extended family, my husband and his family, my sister in laws, childhood friends, college friends (took turns flying out while I was going through chemo), . . . all banning together to provide emotional support and to help out with child care, grocery runs, and meals.

"Everyone prayed hard and sent cards and e-mails. I think this tremendous support played an important role in keeping my inner soul calm. It also helped me to feel the best I possibly could as I worked to knock the dreaded cancer out of my system. . . I truly feel like I owe everyone that helped me something special."

Andrea experienced what many others are privileged to share.

We see people who surprise us by moving towards us instead of away from us as we are diagnosed. We see that trend continue as our own experience moves forward and we are sometimes shocked by who moves either quickly or more gradually away, eventually dropping out of sight.

In my case dozens of people who I felt a strong connection to have fallen away. The times I had available to interact or the methods that work for me to communicate weren't convenient. They felt uncomfortable with the approach I was taking. It reminded them of their aunt's illness.

There are a hundred reasons. I'm not here to judge which are valid. Who is qualified to do that but each individual in their own way.

But others who I felt I hardly knew struck up conversations, introduced themselves, moved into my circle of friends and have become warm and depended-on supporters, expecting nothing in return. Giving much for no reward - and maybe a dead friend at the end of the road. They don't know going into this - Nor do I.

You just never know with cancer or any illness that strikes suddenly.

Sometimes the biggest surprises are not what the disease does. Because it's not only the cancer that takes you by surprise; it's what you do and what the people around you do in the days, months, and hopefully years after diagnosis.

It's been about seven weeks since I knew I had cancer. It's been just over a month since my mastectomy. I feel like I'm just beginning down the road that Andrea traveled. I've only experienced a portion of the sorrow, the worry, the loss, the moments of despair, the times of being buoyed by love, and the feelings of joy and gratitude - and even surprise - which she must feel.

I don't know how I'll react as the road gets longer and harder.

I don't know how you'll react either. I can't promise to be well behaved at all times, nor generous of spirit every day. I can't promise not to cry.

But I can try to be as real as I can be.  And share the journey with whoever choses to take it with me.

A Map Called Encouragement

I was talking to some friends on twitter mere hours ago and wondered how I could explain that the Frozen Pea phenomenon is more than a local story.

It's not that I mean that it's BIGGER than a local story - it's just that it's a story about people who happen to be neighbors in a different kind of neighborhood. 

We're connected by something other than sidewalks.

Within ten minutes and without me doing anything but being amazed the PEAple in Support of Frozn Peas Map was up and running - and popping up photos of people, locating them around the world.

So what does it show? My friend Gloria Bell says that it "demonstrates the breadth, width and diversity of the connections - how we reach & touch so many people."

And for me it's just plain straight out encouragement. I can go to a page by clicking the map - and see a slideshow of support - photos and names rom people all over the world - who have thought of me and the larger fight against cancer - at least once, and have blogged about it and tweeted about it and told someone close to them about it.

If I could put it on my tv on the wall and play it over and over to go to sleep to - I would. If you'll add your name - well - I can't imagine how I could be more pleased than I am now but surprisingly this seems to be a source of unending pleasure. It tells me I can be here tomorrow and the day after that and these people will still be here to support me and the fight.

I feel like they have my back. And I can't even begin to say what that means. Maybe what we're connected by isnt sidewalks or blood lines. Maybe we're connected heart to heart.

Can Today Really be the 4th Frozen Pea Friday?

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

A Blogger Takes on Chemo Room Etiquette

I don't know what the story on chemo is in my case. At least I'm not scheduled for it right now.

But eventually - I mean this is cancer - so there's the word chemo that hangs out there in the air like some kind of boogeyman. It's going to appear in my life at some point. Whether that's in 6 weeks or in 6 years I expect it to show up.

I say "it" as if chemo is an entity. Like Hell or UFOs or Bigfoot - but scarier. Somehow it's taken on a personality of dread and uncertainty. For me the fear of chemo is nearly as great as the fear of cancer.

Not surprisingly I'm doing a lot of reading when I feel up to it - and I came across a cancer patient''s rule for behavior of the folks that accompany cancer patients when they show up to do their chemo visit. It was enough to give me a glimpse into the superficial part of the visits. I don't think I'm ready to know more. All in good time.

It made me smile too. So that's a good thing. You've got to be a little feisty to deal with cancer. I think the author, Kate, is certainly that.

Chemo Room Etiquette

Post on October 26th, 2007 by Kate

This is short list of general rules and guidelines that should be followed when you accompany a chemo patient to the chemo room. They are based on my observations over the past few months and I will add to them as need be.

1. If you aren’t a chemo patient, you don’t get a cushy chair. I don’t care if you have to pop a squat on the floor, we should never have to stand there waiting for a chair because your healthy butt is occupying one.

2. Eat your Big Mac before you step foot into the chemo room, even if that means cramming it down while standing in the elevator. Most chemo patients walk the line between nausea and hunger - the smell of french fries will usually send us running for the bathroom.

3. Don’t ask where a patient has been lately. Everyone has their own treatment routine and, often times that requires a few weeks of rest in between treatment. Don’t ask the nurses about a certain patient - they aren’t allowed to answer this question.

4. Speaking of nurses, they’re here to help me, not you. I know the water fountain is all the way on the other side of the room, but get up from the floor and get your water. Get me some while you’re up!

5. Never look cuter than the patients. That means no True Religion jeans, UGG boots, or Juicy shirts. The chemo room is not your runway and if you see us staring at you, it’s because we want your french fries.

6. Finally, the chemo room is all about us. Whatever we want, we get. So hand over the UGGs and no one gets hurt.

Read more at Kate's blog: I am strong. I am fighting. I am surviving. |.

We Can Talk About Cancer

There's nothing good about getting cancer. It helps start conversations though. And after you've said "I've got cancer" saying pretty much anything else is a lot easier.

I 'met' Duncan Riley of TechCrunch in a virtual sense a couple years ago - I think it was through LinkedIn bloggers though I can't swear to that. I've always thought he was down to earth & easy to interact with.

He wrote about the frozen pea fund and observed that Twitter has created new relationships and taken social networking to new levels. And he's right. It's because of twitter that Duncan knows I'm a night owl because I'm up at odd hours for a US East-coaster & we've tweeted about children and all sort of odd things in the wee hours of my day. It has let us communicate on a new level. I wasn't  so surprised that he was writing about my breast cancer, but appreciated the shot in the arm he gave the pea-fund my friends had so generously started.

Almost diametrically opposite from Duncan in how we met is Cliff Ravenscraft, the Podcast Answer Man He's a direct from twitter friend of a friend and a very new twitter friend.  So I was astounded when he did a podcast about New Media Peas and Boobs on Ice. And I don't even think it was so he could use the word *boobs* in his show title.

Casual acquaintances started tweeting and blogging about cancer. Loic Lemeur added Peas to his avatar. Frozen peas became a topic of the day for Mark Harrison and countless others who stepped up to promote breast cancer awareness.

Then come people I have no connection with at all.

Blogger and Podcaster magazine picked up the story Friday and twitter covered the change to pea avatars as well. I don't know the people there, or don't know that I know them if I do. So it's doubly nice that they'd chose to write about this. 

Katherine Druckman webmistress at LinuxJournal.com pointed to frozen pea Friday as illustrating the "age of information" at its best. IJustine blogged about frozen peas too.

But it's not all about peas. A lot of people are sending direct messages and commenting on my blog. Those kind of personal messages are surely special. I'm sure that there are others that I'm just too overwhelmed to see. People are sharing their feelings and fears and hopes with me, and I'm so appreciative for this kind of interaction. It's honestly what I believe will bring me through the long stretches of hard times.

Meanwhile back to what we're saying about peas and cancer. Dave Winer included an image of a package of peas in Scripting News, with a link to my blog, but apparently couldn't figure what to say about the whole thing.

I can see how that would happen even before I started with the boobs on ice thing.

Hobson and Holtz Talk Peas

Link: For Immediate Release: The Hobson and Holtz Report. Yes they did drop social media names and talk about the idea and the implementation of the Frozen Pea Fund. Very interesting.

Content summary: discussion: frozen peas and the power of grassroots support for a cause - December 24, 2007

The Hobson & Holtz Report, a 69-minute podcast recorded live from Concord, California, USA, and Wokingham, Berkshire, England.

Download the file here (MP3, 31.7MB), or sign up for the RSS feed to get it and future shows automatically.

The Frozen Pea Fund Launches

I don't have details other than money goes to the American Cancer Society to fund research.

But YOU guys can find out all about it while I'm maybe even before I go into surgery.

What ? I'm still out in the dark?

No matter - you light up my life with your generosity and laughter and keeping me company through what can be very scary rattling around inside my thoughts.

I am so amazed and appreciative.

http://frozenpeafund.com