Living loud post-cancer

I first met Jim Semonik (aka DJ Hiem) a good 10+ years ago when I was rolling around with my goth/industrial friends, going to shows and the occasional dance night. He was always a force to be reckoned with, so it is not surprising to me at all that he recently took the stage again with his band, rein[forced], after battling colorectal cancer.

Theres a great video on KDKA about Jim and his story, you can check it out here.

Its another reminder that cancer is not only for the old, or the unhealthy, and that there IS life beyond cancer.

You can also check out rein[forced] by visiting their myspace page.

Out of curiousity

A poll for my readers!

Which of the following most appropriately applies to you?

Young adult with cancer

Young adult cancer survivor

Spouse/partner of a young adult with cancer

Friend of a young adult with cancer

Family member of a young adult with cancer

Health care professional

Other

Please Specify:

Everything Changes....

A few years ago my husband Rick was interviewed for a book by a young woman named Kairol Rosenthal. Kairol, diagnosed with cancer herself, was attempting to document the truths of dealing with cancer as a young adult by telling her own story and talking to others in positions much like her own.  The result of her efforts landed on our doorstep just a couple of weeks before Rick passed away- "Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's".

Tonight I found it fitting to talk about this book, as I should be at a party to celebrate its publication, but decided it best to keep my germ-ridden self at home. I feel really fortunate that I have had the chance to befriend Kairol, albeit through unfortunate circumstance. In the days after Rick's passing I attempted to contact people via his email account, to inform them of what had happened, and Kairol was among them. It just so happened that she was going to be in Pittsburgh the same weekend as the benefit show our friends had planned in honor of Rick, and we made plans to meet. 

I cant really find the words to express how powerful it was to hear Kairol speak at that show. She read from the interview she conducted with Rick a few years earlier, in which RIck speaks about dying. To have Rick's voice present in that room, that full, quiet room of his friends, to hear his own thoughts (and resolve) about his death. What an amazing gift Kairol was able to give to us.

Although only pieces of Rick's interview appear in the book, its full of other stories not so different from his own, yet each unique in its content. Its a reminder that the needs of young adults with cancer are varied, real and often unmet. Its a must read for the young adult cancer patient, their friends, their family, healthcare providers and survivors of young adult cancer.

Kairol works every day to bring awareness to YA cancer, and is an all around awesome and impressive lady. To learn more about Kairol and "Everything Changes...", visit her blog here:

 

Pittsburgh Penguins Beard-a-thon

Another opportunity to support the fight against cancer!

My brother is participating in the Pittsburgh Penguins Beard-a-thon, with proceeds to benefit the Mario Lemieux Foundation.  Its a fun and sorta silly fundraiser, check out my brother's "playoff beard" and donate to the cause!

From their website:

The Mario Lemieux Foundation was created in 1993 by hockey legend Mario Lemieux. After a successful battle with Hodgkin’s disease, Mario is now cancer-free and devotes much of his time to the Foundation raising funds to support its initiatives.

The objective of the Mario Lemieux Foundation is to fund promising research projects. The Foundation’s most significant gift was a $5 million award to the renowned University of Pittsburgh Medical Center, to establish the Mario Lemieux Centers for Patient Care and Research.

The Foundation gave a $2 million gift to the Children’s Home of Pittsburgh and established the Lemieux Family Center.

The Foundation also made a $1.6 million gift to Children’s Hospital of Pittsburgh. This gift supports a Lemieux Sibling Center and Austin’s Playroom in the new facility, as well as a pediatric oncology research project.

For more information about the Mario Lemieux Foundation, please visit www.mariolemieux.org

Bar crawl for Lymphoma

Im not really one to endorse these sorts of events (bar crawls, that is, not charity events!), but if any of you readers feel like wandering around the South Side this weekend, heres an opportunity to do so for a good cause.

Fill the Mug Charity Bar Crawl

Saturday, May 16, 2009, from 4-11 PM

Starting at Shootz Café, 2305 East Carson St.

Touring Pittsburgh's Historic South Side

Have a Great Time While Helping a Great Cause!

Proceeds Benefit the Leukemia & Lymphoma Society

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. 

 

There is so much work to do....

In trying to organize my thoughts about what it is I hope to accomplish, I realize that there is far more need than I can address on my own. Luckily, I have had the good fortune of meeting some real experts in various areas of young adult cancer, health care advocacy and good old fashioned DIY getting things done.

My first goal, albeit an ambitious one, is to assemble and print a resource guide for young adults diagnosed with cancer. My hope is that it can be something doctors give their patients early on, that helps connect young adults to resources both online and in our community. Rick and I spent hours trying to piece it together- if our work can save someone else some time and energy, I would be elated.

This project is HUGELY inspired by the amazing work of my friend Jude and the Be Well! zine. In a moment of absolute crisis we turned to the Be Well! and found a program to help us get some of Rick's medication for free- a program even his oncology nurse didnt know about. I am forever grateful to Jude and her hard work, determination, and passion for helping the uninsured.

In addition to providing information on living with cancer, I want to be sure to address the possibility of dying from it. It seems that there is so much fear to talk about end of life issues, but I know first hand how important it can be to talk about while you're well enough to make your own decisions about it. I know that everyone wants to stay optimistic and cheer for recovery, but dying is an inevitable part of living, and one that I think a lot of young adults need help thinking about and planning for.

Of course I have lots of other lofty goals (wouldnt it be great if I could quit my job and focus on ONLY this?) but I'll save them for the future. If you would like to volunteer to help with the resource guide in any way, please let me know.

Building Resources In Cancer Knowledge & Services

or BRICKS for short.

My name is Charissa, a lot of you know that already, but for those of you who dont allow me to introduce myself. Im a 33 year old mother, women's healthcare worker, sometimes photographer and music maker, and perhaps most importantly- a widow. My husband Rick passed away on March 17, 2009 of Hodgkin's Lymphoma at the tender age of 31.

In the 3 short years I spent with Rick I learned a lot about cancer, the injustices of our healthcare system, and how few resources are dedicated to addressing the basic needs (and ultimately the survival rates) of young adults diagnosed with cancer in their 20s and 30s. After Rick's passing I knew that we had worked too hard for too long for me to keep all the little bits of knowledge I had learned to myself. My desire to help young adults with cancer did not end when Rick's life did, but rather was fueled by it- I knew that now more than ever I needed to dedicate the exhausted and frazzled remains of myself to fighting this fight, and that by doing so I could make something positive come out of this experience. One key lesson that I learned from my husband was that every experience, even the negative ones, had value. They can all teach you something if you let them. This is to be no exception.

And so, over the last 6 weeks and 3 days, BRICKS was formed.

The name probably matters only to those of us who knew Rick, and maybe even fewer of us who were privy to the stories of his childhood. He liked to tell a story of how one summer he spent the days moving roughly a ton of bricks from one side of his parents yard to the other. It seemed like a tedious task, laboring in the sun, brick by brick, back and forth. He could see no real reason for the task, yet still felt accomplished at its completion. Maybe thats the lesson for those of us who are faced with a cancer diagnosis- there may be no reason why, but the dedication to seeing it through is the ultimate accomplishment. Maybe it is only later that we realize the lesson we were to learn.

So, now begins my task- brick by brick building a structure to support young adults in my community. The details of my goals and objectives will be discussed over the next several weeks, and I hope that you will stick with me. I look forward to the great potential in this effort, and know that through my actions I am making my husband immensely proud. There is so much work to do, and I only hope to rise to the challenge.