A word about our booklets....

So you may notice the new profile photo- thats me with the BRICKS for Young Adults Cancer Awareness & Resource Guide, released March 20th. So far about 400 copies have made their way out into the world, not a bad start, right?

In October of last year I was granted a Seed Award from the Sprout Fund. I put out the call to young adults in my community, looking for stories about their experience with cancer. I collected resource information as well, and set to work on this project. In the end, we had a 68 page book, with submissions from 15 contributors. We had stories from cancer patients, cancer survivors, cancer widows & widowers, the mother of a young adult cancer patient, the friend of a cancer patient. The diversity of the stories was pretty incredible. I included a suite of 8 prints by my departed husband, that addressed an element of his relationship to illness, and along the way we lost one of our booklet contributors to her disease. It was an emotional and exhausting journey for me.

Even in the final round of edits I was moved by the things people said in their submissions, and often felt tears brimming in my eyes. Always something different, from a different story, that I had probably read a hundred times before. Still, I didnt realize how heavy these booklets were, I thought maybe I was just being emotional because I was still working through my grief.

The response from people who have read the booklets in the last week has confirmed that they are indeed serious business. They are reaching a broader audience than I had anticipated, and Im finding out very quickly that more people than I could have imagined have been touched in some way by young adult cancer. I couldnt be happier that I am hearing from those of you who fall into this category- I am glad that people are talking about it.

Im so proud of the booklets and grateful to those who helped make it possible. Im honored by the people who were brave enough to share their stories with me. Im eager to get the booklets into the hands of those who want them. If you are interested in getting ahold of a copy, please send me an email at brickspgh at gmail dot com to make arrangements. The booklets are absolutely FREE, though Im finding it costs about $1.70-$2 to mail one. Check back here to keep track of where we'll be over the next couple months, we'll have the booklets on hand at all of our upcoming events (and boy are there some good ones in the works!).

More updates soon, including photos from our past events. Thanks all!

PS- Please feel free to let us know what you think of the booklet, either here in the comments or via email!!

Saturday!! Ride & Talk with Ezra Caldwell

Repost from the Bike Pgh blog, because Erok did such a damn fine job writing this up!

Join BRICKS for Young Adults for a ride & talk with Ezra Caldwell, cancer survivor and owner of Fast Boy Cycles on Saturday, March 27. Fast Boy, a custom frame builder, gained some fame in the bicycle world over past few years with their production of wooden fenders and wooden handlebars, featured in Urban Velo #3.

Several years ago, Ezra was diagnosed with cancer, and his doctors told him he couldn’t ride anymore because of the pressure of sitting on a bike seat. So he built a bike with no seat. In a Bikerumor.com post, he said:

Yeah.. the assless is a pretty fun bike. I built it for myself over the summer after being diagnosed with ass cancer. They told me I couldn’t ride a bike. I asked if it would be ok if the bike had no seat. The doc said, ’so.. what? you’re just going to stand the whole time?’ ’yeah.. that’s right.’ He just shrugged at me and said, ‘yeah.. that’d be fine.’ So I built an assless bike.

You can read Ezra’s writings in his awesome and inspiring blog, Teaching Cancer to Cry.

BRICKS for Young Adults is a Pittsburgh based organization that aims to connect Young Adult cancer patients to people and resources that may be useful to them as they undergo treatment and beyond. They also hope to raise awareness about Young Adult cancers, and impact survival rates through education and activism.

This event is set to coincide with the release of their brand new Cancer Awareness & Resource Guide, the culmination of 6 months of hard work. In addition to providing practical advice, the booklet also features writings by young adults who were affected by cancer, including a contribution by Ezra.

The ride will start at 1pm at REI in the South Side, and will end (around 3pm) at the Hot Metal Bridge Faith Community on the South Side. Here Ezra will talk about bikes, his cancer experience, and The Assless, the special bike he built while dealing with cancer.


Event Details:

Saturday, March 27, 2010

1pm: Bike Ride – The ride will be social and low key, good for beginners, with an effort to use the trail system. Meet at REI in the Southside Works

3-5pm: Talk featuring Ezra- Ezra will talk about bikes, his cancer experience, and The Assless, the special bike he built while dealing with cancer. Hot Metal Bridge Faith Community, 2700 Jane Street, South Side

This event is FREE, but donations are always welcome. Attendees will also get a copy of the BRICKS for Young Adults Cancer Awareness & Resource guide, that includes a submission from Ezra.

53 weeks.

Its been one year and one week since my husband passed away. The one year anniversary was last Wednesday, and it went by with very little commentary from yours truly. I think that surprised a lot of people.

What Ive learned over this last year is that the markers that might remind other people of Rick's absence arent necessarily the same things that remind me. I live with him not being here every day.

Today the weather reminded me of the day each year when, after so many cold months, my husband would decide it was time to shave off the beard and hair he had allowed to grow all winter. The transformation from wooly mountain man to baby faced boy was always surprising and exciting. Remembering this, I cried on my drive home from work. Wishing he could feel the warmth of the sun on his skin and knowing he never would again. Yesterday I had a serious melt down, a let down after the positivity of the weekend's events, a great dissatisfaction at not being able to share my successes with him.

Sometimes I feel guilty for being happy, or worried that I'll never be the kind of happy I want to be. Its up and down, back and forth, easy and hard. Life as a widow is unpredictable. An x on the calendar can mean everything or nothing at all.

I dont mean to be a downer, especially with so many wonderful things going on with BRICKS right now. I do, though, think its important to be honest and open about my experience. So today, the 53 week anniversary of my husband's death, gets a big thumbs down from me. Tomorrow, back to business as usual.

Full updates and more photos of the booklet release will be posted soon, I promise. Thanks for sticking with me, friends.

2 down, 1 to go....for now!

Saturday's booklet release event was definitely a success, and a more detailed report, and photos, will follow shortly. But for now, I wanted to let everyone know about our third and final booklet related event for this month.



Ride & Talk with Ezra Caldwell

Saturday, March 27, 2010

1:00pm - 5:00pm

Location:
Hot Metal Bridge Faith Community
2700 Jane Street
Pittsburgh, PA


Join BRICKS for Young Adults, with Urban Velo & Bike Pgh, for a ride & talk with bike builder and cancer survivor Ezra Caldwell.

Ride will start at 1pm at a to-be-determined location, and will end (around 3pm) at the Hot Metal Bridge Faith Community on the Southside. Here Ezra will talk about bikes, his cancer experience, and The Assless, the special bike he build while dealing with cancer.

This event is FREE (you know how BRICKS likes to do it). Attendees will also get a copy of the BRICKS for Young Adults Cancer Awareness & Resource guide, that includes a submission from Ezra!

Ezra is SUPER awesome and I think people would really like to hear him speak. You may have read about him in Urban Velo a while back.

You can read more about him in his blog Teaching Cancer to Cry

Here is an article about him that was in Urban Velo #3

If youd like to join us just for the talk, please plan to arrive at HMBFC by about 3pm. Those biking can take advantage of the cool bike racks that will be provided by Bike Pgh, complete with bike valets!

Hope to see you there!

Tomorrow!!

So, here we are. The night before the big event. Theres still so much to do before 3pm tomorrow, but I wanted to take a minute to remind you all to come out and join us at AIR, 518 foreland St on Pittsburgh's Northside, for the BRICKS for Young Adults Cancer Awareness & Resource Guide release party!

This is the culmination of 6 months of hard work. I can hardly believe its here, and that I did it. SO many hours, so many helpers, so many stories and emails and on and on and on and all worth every single minute. The booklets look great, the posters (shown above) are out of this world. So many people came together to help make this vision a reality. I am eternally grateful. If I was able to do this much, in such a short amount of time, who knows what the future holds!! I feel really optimistic about BRICKS and proud of what we've accomplished so far.

In addition to bands and booklet contributors, we will have information and/or representatives from Gilda's Club, the Cancer Caring Center, Central Blood Bank, Be Well! Pgh, and the Sprout Fund on hand. Its a great opportunity to collect information and learn about these amazing organizations in our city, all doing such important work.

Details of the event are below, hope to see you all tomorrow!!!


March 20, 2010- BRICKS for Young Adults Cancer Stories Booklet release party

Release party for the BRICKS for Young Adults Cancer Awareness & Resource Guide, to be held at AIR, 518 Foreland St, Pittsburgh, from 3-10pm. This project supported in part by a Seed Award from The Sprout Fund.

This event will include readings by booklet contributors and performances by local bands. With the help of the kind folks at AIR, attendees can bring a tshirt to screen with the BRICKS logo. Local healthcare comrades will be in attendance with info as well, such as the lovely Jude of Be Well! Pgh.

Bands playing are:

Coal Miner
Code Orange Kids
The Frantic Heart of It
Onodrim
Devil Deer
Shambolish

Booklet contributors are:

Katlyn Basilone
Robin Belinsky
Stuart Boslow
Ezra Caldwell
John Elliff
Luke Ferdinand
Joe DeFerrari
Charissa Hamilton-Gribenas
Jenn Gaugler (r.i.p.)
Rick Gribenas (r.i.p.)
Kristen Griener
Eric Meisberger
Jim Semonik
Louise Silk
Douglas Weaver

Making headlines

Well...not really. But BRICKS is in today's Pittsburgh Post Gazette. Go grab yourself a copy. Its really exciting to get this sort of coverage, especially right before our big event on Saturday. It also happens to be the one year anniversary of my husband's death, and its really incredible to have something so positive to think about.

Click here to read the article in the paper, and see below for information on Saturday's booklet release party!

March 20, 2010- BRICKS for Young Adults Cancer Stories Booklet release party

Release party for the BRICKS for Young Adults Cancer Awareness & Resource Guide, to be held at AIR, 518 Foreland St, Pittsburgh, from 3-10pm. This project supported in part by a Seed Award from The Sprout Fund.

This event will include readings by booklet contributors and performances by local bands. With the help of the kind folks at AIR, attendees can bring a tshirt to screen with the BRICKS logo. Local healthcare comrades will be in attendance with info as well, such as the lovely Jude of Be Well! Pgh.

Bands playing are:

Coal Miner
Code Orange Kids
The Frantic Heart of It
Onodrim
Devil Deer
Shambolish

Booklet contributors are:

Katlyn Basilone
Robin Belinsky
Stuart Boslow
Ezra Caldwell
John Elliff
Luke Ferdinand
Joe DeFerrari
Charissa Hamilton-Gribenas
Jenn Gaugler (r.i.p.)
Rick Gribenas (r.i.p.)
Kristen Griener
Eric Meisberger
Jim Semonik
Louise Silk
Douglas Weaver

Quote of the Day

Here is today's quote of the day, from the BRICKS for Young Adults Cancer Awareness & Resource Guide:

"There are a few specks I remember when I first found out. A family doctor appointment soon followed my slight tumor-like finding. I sat on a table (or maybe it was a chair) when the nurse came in and spoke to me as though we were previously engaged in conversation, or that I had the slightest clue of what she was speaking. She cheerfully strung together words that sounded like, “You’ll lead a normal life someday,” and “I’ve been through it too.” Confusion washed into a piecing together of our crossed, unshared timelines."
-Katlyn Basilone

If youd like to get a copy of our booklet, or distribute it at your cancer support group/treatment center/etc, please send us an email at brickspgh at gmail dot com. 3552 of the books arrived in my living room TODAY, and Im excited to start getting them out into the world!!!

TDFC raises over $5000 for BRICKS!

The Tartan Devils Football Club benefit for BRICKS, held today at Pipers Pub, was a HUGE success, raising over $5000 for us! Much love to all involved, it was really an amazing event and so much fun.

Special thanks to:

Alex & Brandy, for making posters, organizing this entire thing, and for the hilarious oversized check shown above!

The TDFC, for being willing volunteers for their public head shaving, and for collecting such an amazing amount of money (this includes the ladies of the TDFC as well!)

Marla of LunaSea Salon & Day Spa, for busting out over a dozen haircuts in about 2 hours, including my own super cute, super short do

Commonwealth Press for the beautiful signage

and Pipers Pub for being our generous and gracious host

I may post some more pics soon, or check it out on our facebook page!

Edit, Sunday March 14: here are two pics of my new haircut!!!



the front




the side

Quote of the Day

Between now and the release of our booklet on March 20, Ive decided to post a quote from a submission in the booklet. I might do this daily, or every couple of days, so you get a sense for whats in the book.

Today's quote comes from fellow blogger Robin Belinsky:

"It was at this point where emotionally I started processing what it meant to
have cancer. I’ve had my moments, both the dark ones, when I know no one else would understand. The low points when I’ve wanted to give up, and I’ve felt my whole life had become wrapped up with cancer, and all my hopes, dreams, and aspirations had evaporated. My self-confidence has been squashed, and my brain has been scrambled. I struggle with fears of death, anxiety about recurrence, and disillusionment with life. There is the deep bitterness about this happening to my life, there is guilt I’m a survivor or don’t have it quite as bad as other people, and there is an indescribable loneliness. Then there is the constant pounding thought I am only 26 years old, and for the past five years, I have been taking a little pill every day to keep my body running. I live on borrowed time... "

To learn more about Robin, and her experience with thyroid cancer, visit her blog Death by Lettuce.

You can read the rest of her story in the BRICKS for Young Adults Cancer Awareness & Resource Guide, to be released on Saturday March 20, 2010.

T-Minus 6 days, or Why Im Lopping Off My Locks in the Name of Cancer

As many of you know, the amazing lads of the Tartan Devils Football Club are sponsoring a benefit event for BRICKS on Saturday March 13th, in cooperation with Pipers Pub on the Southside. The banding together of locals fills me with an amazing sense of community that Im very proud to be a part of, and there is a clear sense of solidarity with our brothers and sisters diagnosed with cancer in the act of shaving ones head. What at first seemed like a simple and fun event has really made me consider my surprisingly deeper thoughts on the idea.

Its obvious that all of us participating in this event recognize that we have the OPTION of losing our hair, something our cancer affected peers do not always get to chose. Ive never really been one to be so full of self esteem regarding my physical appearance that making a change to my hair would be a big decision, I didnt have a whole lot of vanity to put aside, I suppose. But I have realized that I hide behind my hair, its my cover, a shield. Could I really have the confidence to go from this:



to something like this?:




When I start to have doubts, I think about how cancer affected my husband's appearance time and time again, especially in the last couple of weeks of his life. He lost weight, his skin was dry and yellowed, he let his hair and beard grow wildly before the chemo could take them from him. He took self portraits in the bathroom mirror and when I recently stumbled accidentally upon them on the laptop I was taken aback by the old, haggard man looking back at me. I remember that after he took those pictures he shaved his hair and beard, making a decision about his appearance before chemo could make it for him, returning to the familiar scruff and stubble of his healthier days.

Cancer leaves you exposed and vulnerable, open to constant poking and prodding and probing. Medications, procedures and illness itself can alter your physical appearance in innumerable ways. People handle this with great variety- some in anger, others with quiet acceptance. Some with scarves, wigs, tattoos, clothing. Regardless of the method, there is coping that happens, because it has to. You adjust, do your best to feel whole and like yourself, and you carry on. Sometimes acceptance never comes.

For me, should I remain as healthy and fortunate as I am now, this haircutting shouldnt be a big deal. My hair will grow back, if I allow it to. I have the opportunity to raise awareness about young adult cancer, raise some money for BRICKS, and have an amazingly fun time with new and old friends. No doubt I will stumble into the bathroom the morning of Sunday the 14th, and be shocked by what I see in the mirror, but hopefully I will do less hiding, and go out into the world more confident for having gone through with it.

My love and respect for those organizing and participating in this event grows as it approaches, and I hope through doing this they realize how important this event is to me. For my friends and loved ones who have been on the other side, who have experienced the involuntary loss of their hair due to cancer, Im doing this for you, in honor of your strength and courage. This is about so much more than just a haircut.