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!!

What you can do to help BRICKS for Young Adults have an awesome 2010

- Tell a friend about BRICKS. You never know who may have been affected by Young Adult Cancer.

- Share your story. If youre a young adult cancer survivor or patient, consider contributing your story to our cancer awareness booklet and resource guide, scheduled for release in March 2010.

- Come to an event. BRICKS has a lot of amazing stuff lined up for next year, be sure to check this blog or our facebook page often for updates.

- Visit the blog. BRICKSpgh.blogspot.com has been the place for listing resources and sharing stories as I journey through my first year as a young adult cancer widow.

- Consider making a donation. BRICKS appreciates every penny people have contributed to our start up this year.

- STAY HEALTHY. Nearly 70,000 young adults are diagnosed with cancer each year- talk to your doctor, know your body, and take care of yourself.


2009 has been a pretty rough year, lets look forward to doing good work and having much success in 2010. Bigger and better things are on the horizon, none of which would be possible without each and every one of you.

Call for submissions, urgent!

As many of you know, I have been working on a young adult cancer stories booklet and resource guide. I put out the call for your stories- those of you who are young adult cancer patients and survivors, or their friends, families, partners or caregivers. The initial response was wonderful, and a lot of people were willing to participate. With everyone's interest and support, I applied for and received a Seed Award from the Sprout Fund, and my dreams for this booklet were suddenly within my grasp.

Stories trickled in slowly and each one moved me. However, the trickle eventually stopped, and I have been trying to collect the last few straggling submissions. Ive pushed back the release date of the booklet, and have decided March would be the best time anyway, to mark the month of my husband's passing with something more than grief and sadness. Now, as deadlines are approaching and we have less time to get this thing together, I need all of you more than ever! If you are currently working on a submission PLEASE try to get it to me by this friday, December 18th. If you are interested in submitting a story, the same applies!

Grant or no grant, this booklet will not be possible without those of you who have a story to share. Your experiences, challenges and successes can help other young adults embarking on their own cancer journeys, it can ease the feeling of isolation, open up dialogues between young adult cancer patients and the people who love them and raise awareness of young adult cancer in our community. I know that writing about or sharing something so personal is no easy task. Submissions, around 1000 words in length, can be submitted anonymously if preferred. Writers who are ok with attaching their names to their stories can also include a 2 or 3 sentence bio.

Please contact me at BRICKSpgh at gmail dot com for more information, or to submit your story. Thank you to those of you who have submitted already, and I am looking forward to reading new stories!

Electronic Saviors: Industrial Music to Cure Cancer

A couple of months ago I introduced blog readers to my friend Jim Semonik. Jim is a DJ, musician, and cancer survivor who has overcome seemingly insurmountable obstacles and is now doing amazing things in the cancer community. Im very proud to be including Jim's story in the BRICKS for Young Adults cancer booklet coming out in March, and Im excited to pass along updates about his current project, the Electronic Saviors: Industrial Music to Cure Cancer cd compilation.

Check out the video teaser above then visit the Electronic Saviors web site for more information. The testimonials about Jim and the project are awesome, and really speak to his character and determination. More information will be posted about cd release events (which will hopefully include an appearance by yours truly!). If you are even at all interested in industrial music you should fork over the cash and pick this up- its got an amazing, AMAZING collection of artists and the proceeds go to a good cause. Its a win-win situation. You can even pre-order the comp at a special price.

Check back here for more info as the release event date grows closer!!

Go Pink at Panera Bread

October is Breast Cancer Awareness month, and in honor of that, here is something you can do TODAY to make a difference. This was sent to me by a friend:

Please stop by a Panera near you Thursday, October 1st to try some pink ribbon bagels. All the proceeds go to the support the Young Women’s Breast Cancer Foundation.

The mission of the foundation is to educate as many people as they can about Breast cancer in women under 45. They also aim to educate and support younger women with a diagnosis.

Fund raising efforts have benefited the American Cancers Society Reach to Recovery Program and Clinical Trial Grants for the American Cancer Society.

Fertile Hope

For many young adults, a cancer diagnosis is completely overwhelming. But having to make major decisions about your reproductive future can add stress to an already difficult situation. How many 22 year olds know how many, if any, children they want to have, or how to make sure its an option for their future AFTER going through cancer treatment? Even if they can answer those questions, how many people, young or old, can afford to take the measures necessary to ensure their reproductive options?

This is where Fertile Hope comes in:

Founded in October 2001, Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.

The organization was founded by cancer survivor Lindsay Nohr Beck as a result of her own endeavors to preserve her fertility in the face of critical cancer treatments.

The permanent changes in reproductive function are now recognized as one of the most prevalent side effects of cancer therapy. Over the past three decades cancer fighting treatments including chemotherapy, radiation and surgery have led to major advances in the cure rates of various malignancies occurring during the reproductive years, but all have the potential to cause permanent infertility. While several successful fertility preservation options are available, they are underutilized due to a general lack of awareness, education and financial resources.


Fertile Hope addresses this be providing education, financial assistance and support to young adults, as well as by raising awareness and contributing the fertility preservation research. Please visit their web site for loads of great information, or check out the founder Lindsay's blog. If you are in the Pittsburgh area, we have copies of Fertile Hope's 2008-09 Cancer & Fertility Resource Guide available, and would be glad to put one in your hands.

BRICKS added to i2y's Stupid Cancer Blogroll!

Thanks to Matthew Zachary, Founder/CEO of the I'm Too Young For This! Cancer Foundation and 13-Year Young Adult Survivor, this here blog has been added to theStupid Cancer Blogroll.

i2y provides young adults with cancer and young adult cancer survivors with TONS of resources on their web site, as well as through social events and outreach in cities across the country. There are loads of ways to help out and get involved, be sure to spend some quality time on their web site!

Planet Cancer announces retreat dates

Young adults with cancer are invited to participate in a retreat just for them hosted by Planet Cancer:

Spend a weekend with us on Planet Cancer learning how to find a new sense of normal (whatever that is!) after a cancer diagnosis.

Networking—Meet other young adults with cancer, share your experiences, and benefit from each others’ hard-earned wisdom.

Information—Learn from expert guest speakers on topics ranging from insurance to nutrition to handling stress.

Recreation—Prove yourself on the rock wall or in a game of cut-throat Jenga!


Retreat Dates Announced! 25-40 Retreat Aug 21-23 in Austin, TX, and the 18-25 Retreat Oct 23-25 in Boston, MA. Contact Jessica at retreats@planetcancer.org, or call 512.879.6532.


Good news- the retreat is FREE for participants, you just have to get yourself there! For more information and application forms, click here.

Spreading the message....

Whenever there is an event at our house, and weather permits, my son likes to draw on the sidewalk to announce whatever it is we are celebrating. Balloons, flowers and slogans (Happy Birthday! Party inside!) brightly liven up the concrete in front of our stoop.

In an effort not so far off from my son's, DeepLocal has partnered with the Lance Armstrong Foundation (and others) to create Chalkbot, a concrete decorating robot-machine rolling its way along the Tour de France celebrating cancer survivorship and raising awareness. People can create messages of encouragement, support, or in memory of loved ones by simply sending a text message, and are notified with a link to an image of their message after it has been printed.

Nathan Martin, DeepLocal CEO and childhood friend of my departed husband, talks about his involvement with the project:

Like all great work, Chalkbot has a long history of work that it references, draws inspiration from, and learns from. It makes me think back to the messages I used to yell at punk kids before I became a CEO. The Chalkbot is not about technology; it is about how the technology is used.

More of Nathan's thoughts about the project can be read by clicking here. I was deeply moved by Nathan's mention of Rick, and to know that his personal experiences of dealing with a friend with cancer, and the loss of that friend, were put into this project.

To see videos of how the Chalkbot works, click here or here.

To participate in the project, and learn how to send your own message to the Chalkbot, click here.

Hopefully the Chalkbot will function like my son's sidewalk drawings- spreading messages of love and celebration to everyone who sees them.

What now, not what if

Its an inevitable temptation, to ask questions-

What if Rick had health insurance?

What if he had a stem cell transplant last summer?

What if he was still alive?

We can ponder the answers and never come to any real conclusion, which truly, now, doesnt even matter. I've found in the last several weeks that I have to avoid the lure of thinking about these things, and focus more on a bigger question- What now?

This blog is the first step in answering that question.

There are many reasons why young adult cancer has lower survival rates than other demographic groups, one of which being that young adults are more often un- or underinsured. I can not say with any certainty that our family's outcome would have been different had Rick had health insurance (his doctor was amazing and made every option possible available to us), but we did learn how difficult it is to find health insurance or help paying for medications. Beyond that, lack of insurance coverage contributes to late diagnosis, which also impacts outcomes for young adults with cancer. 

So, now, it is our responsibility to advocate on behalf of those young adults for better health care options and access to care, to raise awareness of young adult cancers and the unique needs of those affected by it. The challenge is access- access to care, access to resources, access to each other.  As opportunities to get involved arise, I will post them here, so please check back often.