To blog or not to blog....

Im not sure that the thoughts rolling around in my head are worth sharing, so of course, here I am. Typing them out, working through them.

Ive been thinking a lot lately about how to go about the second edition of the BRICKS for Young Adults Cancer Awareness and Resource Guide. I think its a worthwhile project and I learned a lot the first time around. Surely the second time through will be easier. I have the funds I need. I know, more or less, what Im doing. What I dont have are stories. I need YOU for that part. Ive put out the call a few times, Ive emailed individuals who I thought might want to contribute, the response has been disheartening. People say its necessary, that the project has value. I know that writing about one's cancer experience can be extremely difficult and deeply personal- but isnt that the point? Isnt that what makes the booklet so important?

If youve considered contributing to the booklet, please let me know. Post in the comments here or shoot me an email at brickspgh at gmail dot com. I would really love to make this happen again.

Another thing that will happen again, without doubt, is Blood & Cupcakes. This November will be my fourth time hosting the blood drive, and its almost time to start working on it again, which I can hardly believe. If youre a regular donor, or have never given before, now is the time to start thinking about coming out and helping us reach our goal of 60 units of blood collected for the Central Blood Bank, in honor of their 60 years of serving the community.

Theres lots more to talk about and think about but for now I think this all I want to type about. Ha. More soon, dont hesitate to get in touch with questions, comments, concerns, or contributions.

Health Zine reading at CLP Oakland!

Zine Reading: Health Zines
Thursday, February 3, 2011
6:00 PM - 7:30 PM

We'll hear readings from the BRICKS for Young Adults Cancer Awareness & Resource Guide as well as from other great health-related zines. Bring your favorite health zines to share! Open mic after readings.

Location:
Classroom A
4400 Forbes Avenue
Pittsburgh, PA 15213

Contact:
Jude
412.622.3151
newandfeatured@carnegielibrary.org

Busy busy busy!

Thanks to everyone who has been in touch lately, especially those of you asking for copies of the booklet! Ive been to the post office a lot lately, and I couldnt be happier about it. Im so glad these booklets are getting out of my house and into the hands of the people who they were created for.

Please send us an email at BRICKSpgh at gmail dot com to receive your copy, or with any questions or comments. And dont forget to let us know if youre working on a submission for volume 2! Although I had initially hoped for a December 31 deadline for submissions, thats just not feasible, so the deadline has been extended indefinitely. We cant make the booklet without you.

I finally got over my awkwardness about sending a booklet to my hometown newspaper, so maybe thatll be a good thing that will get us a little press and reach a new audience of people. Ive kept my adult life pretty separate from my childhood life, but this might be one exception. I'll let you all know how it goes!

Thanks as always for your support and happy 2011!

Y'all know these are free, right?

If you havent gotten a copy of our booklet, the BRICKS for Young Adults Cancer Awareness & Resource Guide, now might be a fine time. I'll be making lots of trips to the post office, and wouldnt mind adding a few of these to the mix. If you havent gotten/read/seen one, send us an email at BRICKSpgh@gmail.com with your mailing address and we'll get one right out to you. If you're with a group or organization that might like more than one copy, just let us know how many youd like!

The 68 page booklet contains submissions from 15 young adult cancer patients, survivors, their partners and loved ones. It also has a resource guide in the back that includes a recommended reading list. And dont forget, we're soliciting submissions for version 2, so get in touch if youd like to contribute your story!

Call for Submissions v2.0

So guess what? Its that time again! Here at BRICKS we are beginning to think about working on our SECOND edition of the BRICKS for Young Adults Cancer Awareness & Resource Guide, and it wont be possible without all of you!

BRICKS for Young Adults is looking for YA cancer patients, survivors, partners and caregivers in the Pittsburgh/Western PA area who would like to share their story for the booklet. Stories can be printed anonymously if the author prefers. If youve read the booklet then you have a pretty good idea of what we are going for. Submissions should be about 1000 words in length, though we are certainly flexible. Poems or other forms of writing are certainly encouraged, so long as the story deals with YOUR cancer experience.

Please feel free to email us at BRICKSpgh at gmail dot com with any questions, or to receive a copy of the booklet. Id like to think that we can have a submission deadline of December 31, but we may extend it if need be. This time around, our booklet will be entirely funded but the donations of many amazing individuals over the last year, and we are eternally grateful for your support. The first run of the booklet was very well received, and we're very glad to be able to do an updated version for 2011!

Please consider sharing your story!

Front Page News!!!

Check it out- thats my face on the front page of the Western PA Hospital News! The paper reaches over 30,000 healthcare professionals each month, and this great article will hopefully be read by people who can help us get our booklets into the hands of the young adults who really need them. Just to stress again, the BRICKS for Young Adults Cancer Awareness & Resource Guides are FREE, so please get in touch if youd like one (or twenty!).

Many thanks to the folks at WPA Hospital News for taking the time to talk to me!!

The Supporting Actor

Things have been somewhat quiet on the BRICKS front, but thats because we're so hard at work! Til we have more news for you, I thought it would be nice to share an excerpt from the BRICKS for Young Adults Cancer Awareness & Resource Guide, written by my dear friend and young cancer widower, Stuart Boslow. Stuart talks candidly about figuring out his role after his partner Jason was diagnosed with cancer in his story, The Supporting Actor: Becoming the Caregiver:


In April 2008, Jason found something unusual under his right armpit. He called me to come over to feel it for myself. I still remember the first time I put my hand on his body and felt the mass underneath his skin. I tried my hardest not to over react, but feeling that thing scared me immediately. We discussed the possibilities, and I told him he needed to go have it checked out. It was biopsied in early May, but it was not until May 28, 2008 that we found out the worst-case scenario. It was Burkitt’s lymphoma—a highly aggressive and often deadly form of non-Hodgkins lymphoma.

The months that followed felt as if they were going by so fast. Looking back now at every step, it feels like time stood still at times. I remember many days spent sitting in the infusion room just watching his drips, wondering when we’d be released to go back to our lives away from cancer. I would find myself counting each drip, trying to estimate the hours, minutes, and seconds until we would be free.

When Jason wasn’t sleeping, we would play cards—usually Gin or Rummy— to help pass the time. We also became very familiar with TLC and HGTV shows. We sought humor during those extra long days at the infusion lab. Humor became a big part of Jason’s treatment to the point even the doctors and nurses were involved. They would stop by to chat with us, and before too long, Jason would crack a joke at the nurse’s expense, and then everything was fair game. Those days, which at first seemed they would be long and horrible, actually turned out to be some of the most memorable days of the whole thing.

"I Cant Remember"

Today I wanted to share a passage from the BRICKS for Young Adults Cancer Awareness and Resource Guide, that we put out in March of this year. The segment comes from the story of 28 year old Katlyn Basilone of Erie, PA, who was diagnosed with cancer while in high school.

There are still plenty of booklets available- people can request one by making a small donation via the paypal button below. Any amount is wonderful; we ask for donations only to off-set the cost of shipping, the booklets themselves are free.


"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. She later felt sheepish for the abrupt breaking of a young adult’s reality. I cried a lot of tears that day, and I remember those tears of confusion and change.

I remember everyone thinking I was so brave. I don’t think it was bravery to do what one must. I don’t remember cancer being much of my reality. Sure, I had lost my hair, and was called away for innumerable tests, surgeries, prescriptions, and runs to the little girls’ room. I know these things happened. I have a few pictures and scattered journal entries. Others validate me, or I may very well believe it all to have been a dream.

I don’t remember a lot, but what I do remember does not include a feeling of, “I can’t do this.” It was very much like an obligation I had to fulfill. Like the Sunday ritual of cleaning the family bar; no one wanted to do it. No one asked to do it. We all would loathe it if we were allowed. I am sure of this. No one ever got out of doing it. The more diligent you were at finishing a task Dad or Mum doled out, by finishing it well, the sooner you’d receive your ticket to freedom. Bitching wasn’t really an option. I guess that’s how my cancer felt, like it was not an option. "

-Katlyn Basilone, January 2010

BRICKS booklets in Chicago!

Today we mailed a shipment of the BRICKS for Young Adults Cancer Awareness and Resource Guide to Quimby's Bookstore, so now all of our Chicago friends can pick up a copy!

Quimby's Bookstore
1854 West North Avenue
Chicago, IL 60622
(773) 342-0910

Parent & Kid Zine read at CLP

Tonight my son and I got to participate in a Parent/Kid zine reading at the Carnegie Library. Jude Vachon, creator of the amazing local resource Be Well! Pghorganized tonight's event, and invited us to come and read. I took along copies of the BRICKS booklet to hand out, but chose not to read my submission. I let my 12 year old son do the reading- hes been making a zine called "Swirling Vortex of Terror" since 2005, when he was only 7.

While we were there, we had our first opportunity to see the bookshelves we bought and donated to the library in honor of my husband, to house his very large zine collection which he had intended to donate to the library. After his death, we took the MANY boxes of zines to the library, where theyve all been catalogued and are currently available to be read by the public. Many of the zines are from Rick's own private collection, the rest were part of a project he helped curate called Comic Release. There are literally HUNDREDS of zines on every topic from art, GLBTQ issues, music, health/illness, comics, and so many more. It was amazing to see all of it in one place, available to the world, exactly how Rick wanted it. It also made me very proud to know that my son and I continue to make contributions to zine culture, a culture thats alive and well in Pittsburgh, and that Rick's contribution lives on in such an amazing local institution.

Testify!

Hey! You! Have you received or read a copy of the BRICKS for Young Adults: Cancer Awareness & Resource Guide? We wanna know what you think of it! Was there a resource in the back that you didnt know about, and have since utilized? Was there a story that made you say "Wow, Im not the only one who feels that way!" Was there something we missed that just HAS to be included in the next one?

If so, shoot us an email at brickspgh at gmail dot com, subject line "TESTIFY!" Your input means so much to us, and we want to make sure we are meeting the needs of those this book was made for. We'd love to be able to share your opinions in future grant writing or reporting, or with people who interview us about the booklet. Please also include a line in your email saying whether or not we may reference your comments, which we would always do anonymously.

Please please please get in touch and let us know what you think, we cant wait to hear from you!

How do I get a copy of your booklet??

Thanks to an AMAZING feature story on Tonic.com about the BRICKS for Young Adults Cancer Awareness & Resource Guide, the question of the day has been "How do I get a copy of your booklet??"

The answer is super simple- just let me know you want one! Thanks to the Seed Award we received from The Sprout Fund, the 68 page books are available for FREE to anyone who wants one. They are currently being distributed at cancer support organizations in Pittsburgh, or at our outreach events, but for those of you who are not in the Pittsburgh area, we can mail you a copy. Just use the Paypal DONATE button on the right hand column of this blog to make a small donation to cover shipping and handling fees (its costs about $2 to mail one booklet). Provide complete mailing address information and we'll get one out to you right away. If youd like more than one, or would like additional copies to distribute, just send us an email at brickspgh at gmail dot com to specify how many you need/want. Not only will your donation get a booklet to you, but additional funds assure that we can continue to get the booklets into the hands of those who need it most.

Hey Pgh YA's-

Come join me and the amazing Kairol Rosenthal, author of Everything Changes: An Insiders Guide to Cancer in Your 20s & 30s for coffee and chit chat.

Tuesday, April 20
7pm
Coffee Tree Roasters – Shadyside
5524 Walnut Street

Pick up a copy of the booklet and ask us questions. We're both relatively friendly, I promise!!

Back to work!

After a nice weekend getaway, Im back and back to work. Come see us saturday at the I Made It! Market, where we will be tabling and giving out booklets. You can buy some amazing handmade goods and say hi to us as well.

Date: Saturday, April 10, 2010
Time: 2:00pm - 8:00pm
Location: Former Joseph Beth Bookseller space at the SouthSide Works
Street: 2705 East Carson Street
City/Town: Pittsburgh, PA

Learn more about the vendors by visiting the I Made It! Market website.

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!!

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

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.