October is Breast Cancer Awareness Month

Synergy Devonshire --- the SL coordinator of Making Strides, the ACS breast cancer awareness program --- is organizing the Fighting Spirit sessions this month, on the theme of breast cancer awareness, and she is also organizing several awareness talks on ACS island, dates and times to be announced. If you go to the island you'll see the "Strides" donation kiosks at the information centers on both levels, along with some goody bags and a perfectly wonderful pink pumpkin which you can grab for free!

Also on this theme, Vera Zhaoying who is a student intern at the Anne Myers Medical Center (AMMC) is organizing a breast cancer awareness event called "Time for You" on October 11 at 10 AM. It is at the woman health clinic, AMMC. Please contact Vera for details.

Never give in, never, Never, NEVER

Suzetta Moonites kicked off the new "Fighting Spirit" series of meetings organized by SL's Cancer Survivors Group in Hope Haven on Sunday September 28 by describing her personal experience of childhood leukemia. How she fought it then. And about how she is still fighting, by advocating for improved follow-up of children who were treated with radiation.

Suzetta speaking to a full house in Hope Haven on the American Cancer Society island. She is standing next to a statue aptly named "The Survivor"

Her story began when she was 8 years old. Her teacher (Mrs. T) noticed that she was unable to make it upstairs without being severely out of breath. She told Suzette's parents what she had noticed. The day after that, she went to see her pediatrician. During his examination Dr. P noticed that that her lymph nodes were swollen in the groin, under the arms and behind the ears. She was in the hospital in New York the next day - after a few more routine tests the doctors there confirmed a diagnosis of childhood leukemia. Her doctor explained that there are three types of leukemia - the very bad, the middle kind that goes away but sometimes comes back - and the good kind. She had the 'good' kind.

She had chemo for four years and was also placed in a nationwide childhood cancer study. They formed two groups based on the trial that included those who would have the radiation and those that would not. Suzette was placed in the group that was given the radiation.

Suzette believes she was spared the worst side effects of the chemo because although her doctors and family explained what was happening, they didn't tell her she could get sick. So, she didn't!

"I remember mom telling me that I had too much soda and thats why my tummy hurt. I can still see her rubbing my stomach saying let's go to our special beach place and dance. I never knew it was from the chemo ... that year I learned that Love and Laughter were the best medicine." Her doctor asked her because of her "spirit" to talk with other children in the hospital. So they could see how she looked and "my theory that I had cancer but cancer doesn't have me". After four years she was declared cancer free!

But that wasn't the end. When she was 25 her doctors found a meningioma (brain tumor) which was found to be wrapped around her brain stem. That was when her specialist Dr S told her that this was found to happen to 1% of childhood leukemia patients. It was a traumatic discovery. However, she was more shocked by the fact that her doctor knew and didn't warn her what to look for. She changed doctors and had surgery three weeks later.

"Was I mad - yes but not at the cancer, and not at the tumor. I was angry that I wasn't told what could happen. I was angry that when I complained for the past years of headaches I wasn't warned."

The surgery went pretty well. But later on she had a recurrence.

"I find as an adult you want more information about what's happening to you. I can tell you that the first surgery went really well because I didn't have time to find out. The second one although I wore a smile, I was scared because I went to the library ... As an adult sometimes knowledge can scare you to death. However, my family and friends told me to fight and not give up because I never have before."

The surgery and radiation went well although the tumor couldn't be removed completely. She didn't let anything keep her down, even knowing that she was going to have to live with this in her head. She now lives a "watch and see kinda game".

She was still angry about not being warned. So she decided to get the word out, writing to the newspapers to let people know what could happen, the signs to look for. She wanted to share her theory for recovery with others and raise awareness and funds to help as well. She contacted the American Cancer Society and they told her about an event for the community called Relay for Life. She started a small group of 11 people and they travelled to participate and that event raised $25,000. This year will be her 12th year with Relay for Life. Her hometown is the host of the event, last year they raised over $120,000 and saw 2 other Relay events split off from us that raised well over $100,000 each.

Suzetta says she was especially inspired by a Relay video that she first saw where a teenage girl said that it isn't just about recovery or the battle with cancer ... "it's also for your spirit to know that no matter what, we should "Never Give In..... never, Never, NEVER!"

RFL of SL 2008 Survivorship Awards

At the Wrap Up party for RFLof SL 2008, I announced two Survivorship Awards.

It was hard, very hard, to single someone out. Each and every one of our Survivors Group as well as all our unnamed survivors deserves an award for the way they deal with their cancer. But I reviewed the names with Marissa Goodliffe, who runs the Caregivers Group, and we came up with two names. Two very special people who each in their own way are an example to us all.

We decided on giving the awards to LadyKay Gable and (posthumously) to Artistic (Fimi) Fimicoloud.

As many of their friends were unable to attend the wrap-up party, we held a separate party on Sunday, August 24, in the new Hope Haven on the new American Cancer Society island.




LadyKay Gable, or Kay as she likes to be known (above left) is a very special lady. A long term breast cancer survivor who is a regular and caring participant in our peer support meetings, she is devoted to Relay For Life, and above all a team player.

When Marissa and I were up to our ears in the preparations for the survivors and caregivers art auction for the halfway there fair, she stepped up to help, as she has helped in countless other ways throughout this past year. She has, quite simply, a heart of gold.



Artistic (Fimi) Fimicoloud was not able to Relay with us this year because she is sadly no longer here. But so many of us relayed for her and she has touched and inspired so many people both in first life and second life that we wanted to make this award posthumously. And I am delighted that so many of Fimi's friends (pictured above) from the Park Gallery, the Passionate Redheads, and the Sunweaver Islanders were able to join us for the presentation.

Fimi, as she liked to be known, had advanced metastatic breast cancer. She knew that she would have a tough battle. And she chose to fight it with her paintbrush and crayons. Her painting kept her from spending every moment wondering if her disease has spread to this part or that. Instead, her mind was filled with thoughts on how to portray the nature she so loved.

Although I am quite sure that Fimi knew she was dying, she was able to set it to one side and focus on her art and her family and friends to the last. She taught us quite simply ...

... how to live.


After celebrating we visited the new 'heroes gallery' memorial on the ACS island, where Fimi's friends paused at the memorial to Fimi and placed the award by her picture.

The long path of support

The July 2008 issue of Percussion magazine carried an article about support groups in SL. Freyaschild Lovencraft admits that when she first joined SL she saw it as many do as a game, a fun place to visit, but "... then I began to discover it was so much more than that, especially for those suffering from a wide variety of illnesses and disabilities."


Freya set out on a journey around Second Life. She first visited Synergy Devonshire and myself in Hope Haven where we talked about the activities of the Cancer Survivors Group. She went on to visit the Heron Sanctuary, where she interviewed Gentle Heron and Pecos Kidd; Healing Hands, which is headed by Kaznats Oh, where people in the last stages of their life can spend time with friends and family without the restriction of their hospital beds; and Ouchies!! - a support group for and by people suffering chronic pain, led by Gemini Glitter.

Freya concludes: " What strikes me the most about all of these groups is how positive the environment they provide feels. I can certainly see how one could benefit in many ways by being in the presence of others with such passion and impetus for their cause. Of course I was only able to touch on a handful of groups on my short tour, but lucky for us, and others we know, the path of support us much much longer."

I learned a lot from the article, including the fact that our groups have much in common in the way we reach out and provide both informational and emotional support. And I'm sure we can continue to learn from each other. Thanks, Freya, for drawing attention to this important way in which Second Life can make a difference!

A picture is worth a thousand words

For the curious coming across this blog, who haven't experienced Relay for Life of Second Life, this picture says it all. It shows Dwen Dooley, an avatar member of the Relay Rockers RFL of SL team and cancer survivor, next to a picture of Dwen snapped at his real life Relay for Life. Verrrry coooool.



Thanks Dwen for sharing. (And I like the cap!) And here's a link to Dwen's blog on the Relay for Life website (you will need to register if you haven't done so already).

http://www.relayforlife.org/relay/node/4234

We relayed until our hair fell out ...

Well, my avatar's feet are soaking in a bowl of virtual water and I need bandages on my typing fingers. It's amazing, we raised over $200,000 real US dollars. Fay (Fayandria Foley, our Event Chair) challenged all of the RFL of SL Planning Committee to go bald for a month if we raised $200K. And we did. Here's the proof ... (I seem to be brandishing a pair of giant scissors ...) I am so proud of being part of the team that made this possible.

The survivor and caregiver lap

All of the months of organization paid off and we finally set out from ten different starting points on the Relay for Life of Second Life survivor and caregiver lap. We had more than 130 avatars registered beforehand, and although some couldn't make it, we had an estimated 120 pink and purple shirts on the lap at one time.

My camera controls froze so I couldn't take pictures of the lap itself, but here are the pictures of the survivor camp and starting points.

The survivor campsite, designed by Stella Costello

This was one of the nine survivor starting points around the 35 sims with those amazing survivor cherry trees in the background.

Flash and Poppy get ready for the opening lap

Cinders gets her skates on ...

Above two pics show some of the 80 survivor pictures lining the walk

Gone, but not forgotten ... these luminaria pay tribute to our survivor heroes, many of whom walked the Survivors Lap with us last year.

H is for Heroes ... and for HOPE

We're off! Just take a look at this ... all of those green dots are avatars walking for cancer ... for Relay for Life. Covering 35 sims! The 'H' is for Heroes, the theme of this year's Relay for Life of Second Life. And it stands for HOPE, too.



For more information see: http://www.rflofsl.org/

Only two days to go ...

With only TWO days to go until the start of Relay for Life of Second Life, the Survivors / Caregivers Committee members have been burning lots of candles at both ends to get our part ready in time.

The survivors and caregivers are honored to walk the opening lap, which starts at 11 am SL time on Saturday.

Pre-registration closes today and Dwen Dooley, who has set up an awesome registration form on the web, emailed me yesterday to say we have 119 avatars signed up. That's already around twice the number who took part last year, and we're expecting more to register today, so we're very very relieved that we now have eight starting points and can avoid lag as far as possible.

This year we also have a team of greeters, coordinated by HollyJean Allen, who will answer questions, give out T-shirts, and generally help everyone to have a memorable experience.

Stella Costello has done an amazing job of designing and building us a survivors campsite, and Barnesworth Anubis has built us a walkway to display around 80 survivor pictures which were collected by Harper Montgomery. Stella and Barnes are two great designers who know how to combine bold lines and simple but very effective colors and I am just SO excited about it opening for the public. Come and see us there when you're in world, on the Heroes 3 sim.

Elizabeth Antonelli is responsible for collecting the music which is played on T1 Radio during the Survivors/Caregivers Lap and at other times. SL's musicians have donated 17 'Songs of Inspiration'.

Meanwhile, Marissa Goodliffe and I have been putting the finishing touches to the starting points and we're preparing a gift bag for the survivors and caregivers.

Marissa and Poppy putting out road markers by the Survivors and Caregivers camp

Getting ready for this year's Relay has already been a memorable experience. I've made so many new friends. I've laughed, and I've cried, with survivors who have contacted me in the past few weeks to ask if they can join us on the lap. I've heard so many touching stories.

Come and cheer us on, on Saturday, and don't forget to get to the sims early. The opening ceremony is at 10 am and will be streamed throughout by T1 Radio. And if you are a survivor or caregiver, contact me (survivors), Marissa Goodliffe (caregivers) or Dwen Dooley (registration) to find out how you can take part.

Why do I Relay?

I was recently asked to write a short piece about "Why do I Relay" for the RFL of SL blog.

The main purpose of Relay is to raise money for cancer research, and to find a cure. But my personal reason for relaying goes beyond that, to reaching out to the many many people who hear those words 'I'm sorry, we found cancer', providing support where possible, and to making support services more visible.

Organizations such as the American Cancer Society do more than raise money for research, they fund valuable support and advocacy services such as the Cancer Survivors Network, and promote programs such as "Look Good, Feel Better" (for breast cancer survivors), "Man to Man" (for prostate cancer survivors) and the Cancer Advocacy Network.

So that's why I relay.

Here's a link to what I wrote:

http://www.rflofsl.org/?p=269