Wednesday, December 30, 2009

Pittsburgh Post Gazette article

Recently the Pittsburgh Post Gazette ran an article updating folks on the Pittsburgh Center for the Arts Emerging Artist of the Year award recipients. My husband, pictured above, was the first young artist given this title, and was mentioned in the article. To read it in its entirety, click here.

Tuesday, December 29, 2009

So long, 2009

Just taking a minute to say that I havent much to say right now. I made it through Christmas, somehow, and now Im counting down the hours until I can officially call 2009 HISTORY. Its easily been the most difficult year of my life, and Im looking forward to moving forward.

There are a lot of exciting things in store for 2010, and Im going into the new year ready to work hard and think positive (just a little something new Im going to try, this "positive thinking" thing). I dont usually make resolutions or any of that, but this year it feels really important to see the beginning of a new year as a literal clean slate, a fresh start.

I'll be getting back to news, info, events and all things cancer soon enough, but for now Im going to take a deep breath, and get through these last couple days of a fairly miserable year. There are better days on their way.

Tuesday, December 22, 2009

Happy Birthday to Me.

Today I turned 34 years old. As a person with an almost-christmas-birthday its always been a sort of big deal to pay special attention to it, to separate it out from other holiday festivities. Growing up, my parents always held big parties for me and made sure the day was special, despite the "merry christmas birthday" cards or two-in-one gifts from aunts and uncles. My husband did this too- he always had a a pile of beautifully wrapped little gifts for me, each one thoughtful and special. The entire day was a celebration, from start to finish.

Going into this birthday without him was a little scary. I didnt know if I would be angry or sad. I didnt know if anyone would remember. I didnt know if I would get through the day easily or be miserable-as it turns out Ive been hovering somewhere in the middle.

When Rick first died I thought the entire world would stop, even if just for a minute. That everything should stand still because this amazing, beautiful, loving person wasnt in the world anymore. How could people not feel his absence? How could they just keep going about their daily activities? On a day like today, Im experiencing a sort of similar feeling- I want to shout at my friends, "How do you not feel this? How do you not sense how empty today feels?". Clearly its not their responsibility, and they certainly didnt forget. I got early morning text messages and beautiful flowers from my sister in law. Still, somehow, it feels...well, like something is missing.

There was no birthday cake today, but if I had a candle (or 34) to blow out, Id wish impossible things- to wake up in a place where Rick was present and healthy, to not celebrate my birthday without him, and for him to have more birthdays of his own to celebrate.

Monday, December 14, 2009

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!

Wednesday, December 9, 2009

O, Christmas Tree

On Sunday night my son and I finally decorated our christmas tree. Another in the list of "first time doing this thing without Rick" things that we've found ourselves having to get through this year. I knew it was going to be difficult. But Im honestly not sure I realized how tough it would actually be.

It took us hours. HOURS. We assembled the artificial tree, and I strung it with lights. Lights that worked prior to putting them on the tree, then, once deliberately and thoughtfully put in their place, didnt work. Well, some of them worked. But approximately one third of them, a random bunch in the middle of one string of lights, did not. Eerie. I'll admit, I "yelled" at Rick for leaving me with the task of doing the lights on the tree, then set about trying to fix them. Before I got the strand completely off the tree it decided to work, so I restrung them and we proceeded with the ornaments.

We got a few on the tree, then I came upon one that belonged to Rick, and burst into tears. Jaden came over and put his arm around me, and we sat on the floor together and cried for a few minutes. I wish I could say this only happened once, but it happened over and over as we decorated the tree. The ornament we bought in 2006, inscribed with Rick's name and the year, that we gave him as a present. He cried when he opened the box and saw the ornament, and when I asked why he was crying he said it was because he knew it meant we were a family. Seeing it this year made me cry. So did the ornament that said, on the bottom "Ricky 1980 Love Mommy & Daddy". And the ornament that Rick & I bought last year at Oglebay, where we spent my birthday. And on and on and on as we put the ornaments on the tree.

What some people may not know about my husband is that he LOVED christmas. He loved the decorations and the presents and pretty much everything about it. We hung his stocking this year, and his ornaments, each one a memory of a time we shared with Rick.

Im not sure how things will go once the holiday is actually here, but know we will be painfully aware of Rick's absence. I do remain grateful for the three wonderful, beautiful and special christmases that we had together.

Monday, December 7, 2009

Its whats missing that makes it awesome.

A bicycle. So what, you might ask. Well, look a little closer at that picture and what you'll find is a clever solution to a serious problem.

Ezra Caldwell is a 35 year old cyclist who was told, after a cancer diagnosis, not to ride his bike because the seat would put pressure on a tumor. Clearly not satisfied with that option, Ezra made his seatless bike. The bike is such an amazing way of managing a challenging situation while finding a way to maintain some normalcy in life while going through cancer treatment.

You can follow his story in his blog, Teaching Cancer to Cry and check out his work at Fast Boy Cycles.

Im hoping to bring Ezra to Pgh this spring to talk about his life and his work, so check back for details as I get that organized. His blog is totally inspiring (and the bikes are BEAUTIFUL), so be sure to check it out!

Friday, December 4, 2009

Come to a show tonight

At the Mr Roboto Project
702 Wood St Wilkinsburg, PA 15221

Birds & Wires
Blood Red

I will be there tabling about BRICKS and generally looking to talk people's ears off about YA cancer. Say hello. Hear amazing bands. Its a win/win situation!

Monday, November 30, 2009

Thanksgiving 2009

Lets just cut to the chase here- 2009 hasnt exactly been good to me. In a year when so much was taken away, its tough to try to find things to be grateful for at thanksgiving time. Its never been my favorite holiday, and try as I might to avoid the whole "list the things youre thankful for" trap, I found my thoughts going right to that place over the holiday weekend.

What I chose to think about was where I was over thanksgiving 2007. Rick and I took our "honeymoon" then- sure it was a few months after the wedding but thats just when it seemed to work out. We took a week and went to Paris, and its that trip I find myself feeling most grateful for. The more I thought about it, the more little things I could remember about our trip, tiny gifts that mean more to me now than ever before. It was our first and only adventure outside of the country together, and there were so many wonderful little moments to remember. And thats what its about, isnt it? What you do with the time you have, not how much of it there is.

Rick & Charissa Gribenas, Paris, France, November 2007

Monday, November 23, 2009

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!!

Thursday, November 19, 2009

If there are angels

I am convinced they walk this earth in the shape of hospice nurses. I was familiar with hospice when my grandparents were ill and passed away, but my own, brief experience with a hospice nurse changed my life.

On Monday March 16th I got the news that there was not much my husband's doctor could do. That's pretty much all he said. Rick's blood was not capable of staying stable, his counts were low and tranfusions were seemingly wasted on him. The cancer was spread throughout his body far wider that we had believed, and time was short. "Ive called Forbes Hospice, theyll be there in the morning to help you.", his doctor said.

The last night of Rick's life was a sleepless one. I have never recounted the details because the changes in Rick and the struggles we went through in that one night are not images I necessarily want to leave anyone with. I knew that the nurse would be at our house in the morning, and I think in some weird way, Rick did too. He died about half an hour before she arrived.

I had called the hospice folks that morning, to see what time they would be coming. I had no idea Id be calling them back so soon to say there'd be a "change in plans". The woman on the end of my frantic, second phone call was so calm. She would call the nurse who was on her way to our house, and let her know Rick had passed. She said then that she would call me back, and stay on the line until our nurse, Jan, arrived. She did exactly as she promised- she called me back just a couple of minutes later and talked to me about Rick. She let me cry or curse or talk about my husband. I held his hand in my right hand, and my phone in the left.

When Jan arrived, she double parked in the street and walked right into my house. She introduced herself, hugged me, and checked Rick for vitals. She pronounced him and quickly wrote down the time of death. We talked for a couple of minutes, she made sure I was ok, then she went to move her car out of the street. When she came back we talked some more, and then she suggested we clean him up. We filled my best bowl, a wedding gift, with warm water, got a washcloth, and went back to the living room. She asked if I wanted to wash his face, and allowed me to do as much or as little as I felt ok doing. I remember being amazed at how well she was able to gauge my comfort level with everything. She was so respectful of him, and treated him with so much kindness. It made me feel as though we were simply taking care of my husband, not handling his empty shell of a body.

As we moved through the next series of tasks we talked about each step, and she empowered me to proceed at my own pace. I was nervous, I didnt know what "the rules" were. I didnt know how long I could keep him at home, how to tell his parents, when to call the funeral home. She assured me that I would know when it was the right time to do each thing, and she supported me in my decisions. She was kind and gentle and in no way patronizing. She stayed with me as long as I needed her there, she helped me make the calls and get through each tough task. She reminded me that each decision I made would be the right one, that I shouldnt doubt myself or my ability to get through it. When she left, I felt as calm and comfortable as I imagine I could have, all things considered.

I know that our hospice nurse was simply doing her job, but I cant imagine its an easy one. I really feel it takes a special sort of person to make hospice care their life's work. And I certainly feel a great deal of gratitude to both of the women at Forbes Hospice who helped me through what was easily the hardest day of my life.

For more information about hospice care, please visit any of the following sites:

-Forbes Hospice, Pittsburgh
-Hope Hospice, Pittsburgh
-National Association for Home Care & Hospice
- Caring Connections, a program of the National Hospice and Palliative Care Organization

Saturday, November 14, 2009

The Frantic Heart of It benefit for BRICKS

Please join BRICKS next Saturday, November 21st for a benefit show hosted by local band The Frantic Heart of It. This is no ordinary cd release or benefit show- it goes so far beyond that.

On March 17th, my husband Rick passed away from Hodgkin's Lymphoma. On that very same day, another young adult in our little punk rock community was diagnosed with leukemia. I will never forget sitting on my living room couch that day, my good friend standing in the kitchen taking a phone call. His hand went to his face at the news he was hearing. Doug had cancer. Rick died not 12 hours earlier from the same evil disease. Could this really be happening? How much could we all take?

At the time I only peripherally knew Doug through other friends, I dont even know that we had ever met "in real life". But that day he became my brother, walking down the same road I'd been traveling for so long. Cancer was not something that was going to be out of my life after my husband died. It reaffirmed my desire to do something with everything I had learned.

I've kept up with Doug and his beautiful family, and now some 8 months after his diagnosis his band is putting out their long awaited cd. This show will be a celebration of so many things, and I hope as many of you as possible will be able to join us. I'll be there armed with all sorts of materials and free information for people. Bring your dollars and buy the band's cd. Buy them a round of drinks. Celebrate being alive.

The Frantic Heart of It cd release show
with special guests
Everything is Ruined
Playoff Beard

at Gooski's in Polish Hill
3117 Brereton St, Pgh
Saturday, November 21, 2009
9pm, 21+, $5

Monday, November 9, 2009

2nd annual Blood & Cupcakes a success!!

Im finally beginning to recover from my crazily busy weekend, which, I am happy to report, was totally worth all of the hard work. Our blood drive was a success, and Id like to take a minute to re-cap and thank everyone involved.

Thanks to Mike & Amanda Budai for use of their button press, without which we could not have made these SWEET pins to hand out. And thanks to my darling Bethany for her help making the pins the night before the blood drive!

Thanks to Jen & Jeremy Hedges for the use of Modern Formations Gallery for the blood drive. This picture is of the space before it was full of tables and phlebotomists and BLOOD.

Thanks to Moop, Garbella, Enrico Biscotti, Dale McCullough, and Friend or Foe for their raffle item donations!

Thanks to my son, Jaden, for getting up at 6am, loading the car, unloading the car, setting up chairs, putting away chairs, and dealing with a crazed mom all day. He's the best kid ever!

Thanks to Courtney, Deanna, Diana, Ruth, Lynn, Alicia, and Lydia for baking cupcakes (which clearly were being eaten by donors and other attendees!)

Extra special thanks to Nate, for designing our logo, and Lynn & Steve for their help with the mugs.

HUGE thanks to everyone who came out and donated blood, or at least tried to donate. It means so much to me that each and every one of you came out and were willing to give blood to help those in need. It may seem like a small thing, but to the person who needs the blood its so so so very important. Im most proud that our little blood drive continues to turn first time donors into regular donors; getting people on the path to frequent donation is my ultimate goal and proves that one small gesture can do something big.

I am sure there are people to thank who I havent mentioned, and I apologize. This day could not have been possible without each and every one of you.

Wednesday, November 4, 2009

One less thing to worry about

A friend passed this along to me today and I wanted to get it posted ASAP. So many good things to share with everyone already this month!

Cleaning for a Reason is a newly formed nonprofit offering free professional housecleaning and maid services to improve the lives of women undergoing treatment for cancer. They are located in Texas, but work with professional house cleaning services around the country to help women in need wherever they may live.

Imagine having one less thing to worry about. Knowing you will be able to come home to a clean house. This is such a great idea, and there are lots of ways to help them with their cause. More info about how to apply for the service or how to help can be found on their website.

Tuesday, November 3, 2009

November is Pancreatic Cancer Awareness month

So lets learn a little bit about it, shall we??

- This year, 42,470 Americans will be diagnosed with pancreatic cancer, and 35,240 will die from the disease

- No early detection or screening exam is currently available for pancreatic cancer

- An estimated 76% of patients will die within one year of diagnosis

- Many symptoms of pancreatic cancer are vague and can be attributed to a variety of other conditions

- Risk factors include but are not limited to family history of the disease, obesity and smoking

There are lots of resources out there with more information, such as the Mayo Clinic website. I recently found the Pancreatic Cancer Action Network website, and its great. You can find information about the disease, ways to get involved in advocacy efforts, and the best part- survivor stories.

Check it out!

Monday, November 2, 2009

Only 5 more days!

Until our second annual Blood & Cupcakes replenishing blood drive. There are still some time slots left, so please email us at BRICKSpgh at gmail dot com to sign up!

Join BRICKS for Young Adults for our 2nd Annual
Blood & Cupcakes
Replenishing Blood Drive to benefit Central Bood Bank
In memory of Rick Gribenas (1977-2009)

Saturday, November 7, 2009
Modern Formations Gallery
4919 Penn Avenue. Pittsburgh PA 15224

There are lots of surprises for donors, including tasty cupcakes and a raffle full of excellent prizes. If you cant donate blood, but want to participate, please stop by and see us. Learn about BRICKS for Young Adults and the things we are doing to help those with cancer in our region.

If you are planning to donate blood PLEASE send us a message to coordinate a donation time. Time slots are available every 15 minutes (9, 9:15, 9:30 and so on). Walk-ins will be accommodated day of the drive as time allows.

This is really important! Give us your bloods!!

To learn about donor qualifications, visit

Saturday, October 31, 2009

Halloween in Pittsburgh

Its cold, wet, and dreary, but my son and I still ventured out this morning for a halloween parade a couple of neighborhoods over from ours. We didnt expect a big fancy parade, but the lure of candy and some folks in costumes seemed to be enough. Who would have thought that at the end of the parade, Franco Harris would come walking along. My son was so excited- we were able to get their picture together. Even halloween in Pittsburgh is Steelers-related!

No BRICKS or cancer news today, just wanted to wish everyone a happy halloween!

Tuesday, October 27, 2009

Who takes care of the caretaker?

Its been slow here on the blogfront, mostly due to the fact that I cant seem to shake this stupid cold. Id be more worried, after a long 3-4 weeks of lingering coughs and sniffles, if it didnt seem that most everyone has this weird cold right now.

Its the first time Ive really been sick since Rick passed away, and to be perfectly honest, its kicking my ass. Much as I hate to admit it Ive actually had evenings when, after I got the kid and the dogs settled in for the night, Ive layed on the couch and cried, cursing the universe for taking away the person who always took care of me. Sure, I spent the last 10 months of Rick's life being his caretaker. But at least if I was feeling the slightest bit under the weather he was there to give me a kiss or a hug, even if it hurt to do it. He always had a smile for me. And sometimes thats all I needed.

Having my husband in my life was really the first time I stopped being a hard ass and actually let someone take care of me. It took some getting used to at first, and I certainly resisted a little bit. Ive been known to be stubborn. Fortunately Rick was persistent, and eventually I got used to letting him carry a little bit of the weight. We divided chores and household jobs. i allowed myself to rely on him. He knew how to do laundry, cook a wonderful meal, and could fix just about anything. I dont think I ever took any of this for granted, but after he died I was hit immediately with the gravity of just how much he had taken off my shoulders. I had to walk the dogs every time they needed to go out. The dishes wouldnt just disappear from the sink. And when I got sick, no one would make me a cup of tea or let me nap while they helped my son with his homework.

I suppose this is another in the list of "firsts" I have to figure out in my life after my husband's death. I think as parents or caretakers we forget sometimes how to take care of ourselves, or even remembering that we need to make a point of doing so.

Tuesday, October 20, 2009

PBS, Arthur & Cancer

My son, although he is a little old for it now, has always loved the PBS show Arthur. He's home sick from school today, resting on the couch glued to the TV. We flipped to PBS and found a special episode of Arthur dealing with cancer. A synopsis of the episode from the PBS website:

When Lakewood Elementary's beloved lunch lady Mrs. MacGrady is diagnosed with cancer, Arthur and his friends all react differently to the news.

In this special episode, parents and kids — with some help from guest-star Lance Armstrong! — learn how they can come together to support Mrs. MacGrady and each other.

"The Great MacGrady" will air every day the week of Monday, October 19.

Its really great watching the kids work through their concerns and questions. Is cancer contagious? Will Mrs McGrady ever be better? What does a person who had/has cancer look like? I highly recommend trying to catch this episode if you have kids!

Saturday, October 17, 2009

Cold Hands, Warm Heart

Its another boring saturday night at home, for me, feeling the return of the cold I thought I had finally gotten rid of, flipping through the channels while bundled up on the couch. As Im channel surfing, trying to avoid college football and limited by our lack of cable, I come across an episode of The Outer Limits, a sci-fi show that aired in the mid 1960s.

The episode on tonight is called "Cold Hands, Warm Heart", and is about an astronaut (played by a young Will Shatner) who travels to Venus. During his trip, he has a mysterious encounter, and comes back a changed man. He has strange nightmares, is unable to stay warm, and develops webbing in his fingers. Doctors test him and grow concerned, his wife fears the worst when he begins having fits of delusion and rage. Eventually it all works out (a little too quickly, really) and all is well.

No biggie, right? I spend an hour watching a relatively entertaining old school sci-fi show. Then the closing narration comes on and I, being of completely unpredictable emotion, lose it over this:

"The eternal, never-ceasing search for knowledge often leads to dark and dangerous places. Sometimes it demands risks not only of those who are searching, but of others who love them. These, in their own special way, know that knowledge is never wasted, nor is love."


Friday, October 16, 2009

BRICKS for Young Adults receives Sprout Fund Seed Award

It is with great enthusiasm that I can announce that BRICKS for Young Adults has been named a recipient of a 2009 Sprout Fund Seed Award. What is this, you ask. Why is this a big deal? WELL. Its huge. The Sprout Fund provides "seed" money for organizations and individuals with ideas for community-based initiatives that engage young people in the region. For BRICKS, this refers to the cancer stories/awareness/resource booklet we are developing. With funding from the Sprout Fund, we will be able to proceed with booklet production, meaningful distribution, and outreach. Most importantly, we will be able to put this booklet in the hands of young adults in western Pennsylvania FREE OF CHARGE to them.

About the Sprout Fund:

The Sprout Fund enriches the Pittsburgh region’s vitality by engaging citizens, amplifying voices, supporting creativity and innovation, and cultivating connected communities. Founded in 2001, Sprout facilitates community-led solutions to regional challenges and supports efforts to create a thriving, progressive, and culturally diverse region. With strong working relationships to many community organizations and regional stakeholders, The Sprout Fund is one of Southwestern Pennsylvania’s leading agencies on issues related to civic engagement, talent attraction and retention, public art, and catalytic small-scale funding. With ongoing local support and continued appreciation by the communities it serves, The Sprout Fund will continue to catalyze creative solutions to pressing challenges, engage people in community conversations, respond to the needs of its target audiences, open doors to civic participation, and promote responsible stewardship of community interests.

For more information about the Sprout Fund, and what they do, please visit their website

More details about our project are coming soon, so please stay tuned. This was the good stuff I referred to in an earlier post, its here! Im so excited that the many, many hours I put into the grant proposal paid off. Many thanks to the people who looked over the proposal for me, gave input and support, and for everyone involved in the booklet project. This award will TRULY help seed something wonderful.

Monday, October 12, 2009

Fresh Widow

Thanks to my fancy blog stats tracker I can see where people are finding out about me, and kept seeing this "freshwidow" blog come up, which has a link to my blog, so I decided to check it out. Wow. WOW. What a lady. I have been reading backwards through the blog, and having a good time doing it. She too lost her husband to cancer, but didnt start blogging until much later. Now, theres this massive collection of posts about her journey over the last couple of years.

I was especially taken by the post Grieving: How We Survived the First Year+.. At 7 months in, I could really go down that list and check off all of the things I myself have been doing, and it made me feel a little more normal to know I wasnt the only one whose done these things, as good or bad as they may be.

The blog has lots of tips and ideas for friends of widows, and lots of things to laugh and cry about for those of us who are traveling the same road as Fresh. Her style and wit are evident in how she describes herself:

I identify as a young remarried widow and Mom to a 5-year-old. Our loss was in June 2006. I see widowhood as an experience, not a label. Loss is something you get through -- not over. "Closure" is so Hollywood. Some of us may turn lucky enough to use what we've been through as a springboard for revelation, renewal, or reinvention.


Saturday, October 10, 2009

It's been a long week....

...and Ive considered writing about at least a hundred different things, and actually written about none of them.

I would like to mention that Kairol Rosenthal posted a really wonderful entry in her Everything Changes blog this week, that asks about end of life issues and the place of end stage cancer patients in the young adult cancer community. Its proven to be one of the most interesting exchanges on the blog in recent days, and I really recommend people check it out. The comments people have left are so honest, and candid, and absolutely moving.

Personally, I suddenly find myself the parent of a 12 year old this weekend. As my son turns this very important age, I try to remember when I got old enough to have a 12 year old child. It seems to have happened really fast. Last year, my husband missed the better part of my son's birthday party because he needed platelets. He spent the day sitting in an ER waiting for blood. Its hard not to think about those things today, the anxious feeling I had as I waited for him to come home, hoping he'd at least make it in time for presents. Or at least maybe cake. Or maybe he'd get home before everyone had to leave. I remember knowing that day that things were serious.

Beyond that, I dont have much to share. Nothing important anyway. Hopefully there will be lots of good things to share next week.

Sunday, October 4, 2009

Sign up now to donate!

We are now beginning the donor registration process for our second annual Blood & Cupcakes replenishing blood drive to benefit Central Blood Bank. The event will be held on Saturday, November 7, from 9am -3pm.

Donation times begin at 9am and are available in 15 minute intervals- 9am, 9:15am, 9:30am, 9:45am and so on. Up to 3 donors can be signed up in each time slot. Please email me at BRICKSpgh at gmail dot com to secure your time slot!

For more information about the blood bank, or their donation requirements, please visit Central Blood Bank qualifications.

Saturday, October 3, 2009

Planet Cancer Roadshow is coming to Pittsburgh!

If anyone reading this blog works at UPMC, West Penn or Children's Hospital, its your lucky day! Staff and Crew from Plant Cancer will be in town this week to talk about young adult cancer and what we can do about it, and theyre coming to you. More info below from the Planet Cancer website:

Planet Cancer is taking our young adult cancer Advocacy Roadshow on the road! Starting in fall 2009, we’re hitting cancer centers across the country to spread the word about young adults and cancer.

Planet Cancer staff - alongside our amazing doctor friends who’ve already drunk the young adult Kool-Aid - will be talking young adult cancer survival rates, clinical trial stats, psychosocial dilemmas, and what your docs can do about it. If we’re headed to your institution, please tell your medical care providers to come see the Planet Cancer presentation at their center's Grand Rounds.

What to expect at the Planet Cancer Roadshow:

-The latest in young adult cancer research
-Inside the world of a young adult with cancer
-Why our unique needs aren't being met
-What docs, hospitals and care teams can do about it
-Resources and the future of young adult oncology

Planet Cancer will be in town Wednesday & Thursday, so talk to your docs and make sure they're in attendance!

Thursday, October 1, 2009

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.

Sunday, September 27, 2009

Big dreams...

Ive always wanted to own a church. Or a warehouse. Or some giant space to live and work in. Last summer Rick and I, along with a friend, went to look at this church thats for sale in our neighborhood. We toured the entire place- the giant, beautiful, neglected church and the accompanying school/social hall. I loved it. We loved it. Between Rick and I we probably took over 200 photos of the place. It was a maze of rooms and secret spaces (like the duckpin bowling alley in the basement, complete with lanes and seating) and my imagination ran wild with what I could do with a building like that.

Of course, it carried a pretty hefty price tag and being in a primarily residential area limited what one could do with it. Eventually I sadly gave up on it, in a way, and was quietly grateful for getting to explore such a fabulous place at all. Until the other day, when I stumbled across it accidentally and learned that it was still for sale, and at a greatly reduced price. I assumed, last year, that some developer would snatch it up and chop it to bits and turn it into over-designed condos, but it appears as though that was not the case.

So now my brain is reeling again with thoughts of making this church a home for BRICKS, as well as my son and I, and maybe even a couple of other small organizations. I have daydreams of dumpsters overflowing with the garbage we'd have to haul out of it, and being covered in paint and dirt. I can see the old classrooms becoming my office, with their rows of coat hooks and massive chalk boards still on the walls. I cant, however, dream up a way to raise the $450,000 it would take to buy it, let alone the money it would need to renovate/clean/make it livable.

One thing Rick taught me about dreaming big, is that sometimes the dreams are enough. A person should always think big, dream wildly, and imagine the possibility in their dreams. And maybe, sometimes, one of those dreams might come true.

Giving Anonymously

I recently learned about this amazing nonprofit organization called Giving Anonymously. Pretty self explanatory, right? The organization is entirely volunteer run, and facilitates giving without strings. Say your neighbor loses their job, and you know they could use some cash. You can contact Giving Anonymously, provide the info for your neighbor and how much you want to give them. GA verifies address info, and sends a check. All they ask in return is that the recipient call a toll free number and leave a message for their anonymous donor.

What a great and fun way to help people. So cool. To learn more about how Giving Anonymously works, read their FAQ.

Tuesday, September 22, 2009

Its been a little while....

...since Ive written anything. Not so much for lack of things to say, but rather, lack of wanting to say it.

Last Thursday I sat down at my (well, Rick's) laptop, prepared to write about how that day marked exactly six months since his passing. I held my fingers over the keys, and nothing came. I couldnt do it. It just wasnt the thing to do, wasnt the time. It doesnt mean the event wasnt very much on my mind.

At our wedding, Rick chose a reading from a John Cage lecture, which has become more and more important to me over time. I chose a few lines from it to have printed on his 'prayer card' at his funeral. I want to share part of it with you, dear readers, because theyre the only words I have right now:

But now there are silences and the words make help make
the silences. I have nothing to say and I am saying it and that is poetry
as I need it. This space of time is organized. We need not fear
these silences we may love them.

Thursday, September 17, 2009

Pittsburgh Walk- Light the Night

Help the Leukemia & Lymphoma Society raise money for research, patient financial assistance, and education about blood cancers.

Pittsburgh Walk 2009

Thursday, October 1, 2009

Heinz Field
Pittsburgh, PA

Walk Distance: 2 miles
Registration/Pre-walk Celebration including food, music, & kid's activites: 5:30 pm
Walk Start Time 7:30pm

For more information, click here:
Pittsburgh Walk

Monday, September 14, 2009

Call for submissions

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 a booklet we are making. Stories can be printed anonymously if the author prefers. Please email me at BRICKSpgh at gmail dot com for more information!

Thursday, September 10, 2009

Reader Poll: Do you have life insurance??

So apparently September is "Life Insurance Awareness Month". Who knew?

A good friend of mine is in the insurance business, and has been trying to get me to sign up for life insurance for ages, since I dont have a policy through my current job. I think Im going to give in to her demands this month, and go for it. Its not that I dont see the value in it, Ive just been a little preoccupied (and broke). My husband didnt have life insurance- he became ill when he was very young, and getting life insurance after his extensive history of illness would have been absurdly costly, if even possible at all. So I wonder, fellow Young Adults, how many of you have life insurance? Is it provided by your employer or did you get your own policy?

If BRICKS were to hold an informative meeting about the benefits of life insurance and how policies work, would folks in the Pittsburgh area attend?

Sunday, September 6, 2009


M is the roman numeral for one thousand, and thats how many hits my blog has had (well, ever since I started counting at the very very tail end of June). I wish I had the counter right at the start, but I dont think I realized just what this thing would become.

I just wanted to take a minute today to thank all of you for visiting, and for sticking with me like I asked. I have really flashy web stats that show me where you are coming from, where you went after here, how you found me, and what part of the world you live in. Its really amazing to see that some people actually follow the links I post here, it makes me feel like maybe some of this is useful to people. Thank you for the kind comments, the thoughtful emails, and for all of the support.

Things are only going to get more interesting, I promise, so dont go anywhere!

Thursday, September 3, 2009

Reminder: Blood & Cupcakes in 2 months!!

Just a friendly reminder that our SECOND annual blood drive is coming up in about 2 months. Im giving plenty of warning so that any of who you regularly donate blood can shift your schedules a tiny bit (or a lot!) so that you will be eligible to donate at our drive!

We had a lot of success last year with this, and are setting higher collection goals this year. Again, we will have goodies for those who donate, and ways to participate in the festivities even if you are unable to donate blood.

For donation guidelines, please visit the Central Blood Bank qualifications. As soon as I have all of my paperwork for scheduling donation times I will let everyone know. Until then, if you would like to help with the event, or donate an item/gift certificate/etc for the raffle, please email me at BRICKSpgh at gmail dot com!

Tuesday, September 1, 2009

"There are no rules for this"

It is with great pleasure that I inform you all that my second guest blog has been posted on Kairol Rosenthal's "Everything Changes" blog. Such a great resource for young adults with cancer (and their friends, and their families, and everyone else too), and I am really excited to be able to write about my new life as a widow and know that maybe I can reach someone in the process.

Please head on over and take a look, and feel free to leave comments here or on Kairol's blog.

Saturday, August 29, 2009

Update: Young Invincibles website launched

In a previous post I mentioned an organization called Young Invincibles, that works to get young adults involved in health care reform. At the time their website was pretty minimal, but they have since launched a full version of the website, and I encourage you to check it out!

Wednesday, August 26, 2009

Thank you, Netflix

A couple of months before Rick passed away, he thought we should cancel our Netflix subscription. We were definitely hard up for cash and pinching pennies, but to me, sitting on the couch together having a good laugh (or cry) over a movie was one of the last activities we could still do together.

I won that tiny battle, and we kept the subscription, curling up on the couch at night with our movies. Some were ones I wanted him to see, others ones he wanted me to see, some were movies we both loved as kids. After he died, the movies kept coming, and every now and then I make some time to watch one of them. When movies that were his choice arrive, Im often surprised at the relevance of their content. Movies about love, and loss, and not being afraid. And sometimes, like today, a movie comes that I just cant figure out. My husband had a silly and sometimes dry sense of humor, and as I sat here today watching "Im Gonna Git You Sucka", a movie I'd never seen before, I can hear my husband's funny little giggle.

And maybe thats all the movie has to do- remind me of his laugh. Im glad for the nights we sat with the laptop, adding tons of movies to the queue, and that the movies he picked are still coming to the house these 5 months later. Sometimes he reminds me that everything is ok. That I will be ok. And that through the sadness, its still ok to laugh.

Tuesday, August 25, 2009

We're back!

Hi all,

Just letting you know that we took a few days off for a little (much needed) vacation, but Im back and ready to go. Lots of things to talk about over the next couple of weeks, so stay tuned. My son goes back to school tomorrow too, so we've been busy, but I promise to get back on track with the posts and updates.

As a reminder, we are on Facebook AND MySpace, so please add us if you havent already!

Thursday, August 13, 2009

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.

Monday, August 10, 2009

A logo!

Im so excited (and really nervous!!) about how quickly things are moving here at BRICKS headquarters. It is with great joy and enthusiasm that I present our wonderful logo to the world!

Many thanks to board member Jeremy H. for making the logo, as well as a really great informational handbill that I hope to make available for download in the near future.

Ok- its back to grant writing for me. More soon!!

Wednesday, August 5, 2009

Building resources = Sharing myself?

I know the blog posts have been a little scarce lately, and I have been, admittedly, distracted. I think thats fair for a new widow, dont you?

Either way, I think I got really caught up in needing to focus on my "mission statement" of connecting young adults with cancer to community resources that may be valuable to them, and forgot that I myself might actually be one of those resources. As a young adult cancer widow, I have something to offer others, and I think I lost sight of that in trying to concentrate my efforts on other aspects of BRICKS. The prospect of sharing my struggles with others is scary, but quite possibly necessary.

So, from here on out, I promise to find a better balance, to share what Im going through with those of you who are reading this. I know that there are people reading who I have no desire to disclose the intimate details of my life to, but I also know there are people who will benefit greatly from what I can give, and that far outweighs the other.

My friend Kairol, of whom I often speak, has asked me to guest write for her blog, Everything Changes, and I would encourage you to check there as well as here for my writings on my trials and triumphs as a young cancer widow. I promise you, dear readers, to be a little more giving of myself. When I married my husband, an artist, he cautioned me that he shared himself with the world. And although I certainly respected that concept before, I understand it now better than ever before, and strive to live by it as Rick did. I'll do my best.

Sunday, August 2, 2009

For the love of Liz

In contemplating my own loss, and dealing with being a young widow, I have become painfully aware of a few things- people dont like to talk about the death of a young person, and there arent a lot of useful resources out there to help young adults who have lost their partners. Of course, there are all sorts of grief counseling options, but who's there to babysit your kid, make sure you can pay for groceries or dont default on your mortgage?

After the sudden passing of his wife, Liz, in 2008, Matthew Logelin tackled this very issue, and just this year the Liz Logelin Foundation was created. Their mission statement reads:

The Liz Logelin Foundation was established to assist families who find themselves in the heartbreaking, catastrophic situation of having lost a spouse, life-partner, and parent. The Foundation’s goal is to financially assist these families as they deal with the loss of their loved ones, and struggle to move forward.

To learn more about the Logelin family, or to find out how you can make a donation or apply for the financial assistance, visit their website. But just a word of caution- Matthew, Liz & baby Madeline's story is absolutely beautiful and heartbreaking, so prepare yourself! Be sure to visit Matt's amazing blog as well.

Friday, July 31, 2009

Young Invincibles

There are more and more ways for young adults to get involved in the fight for health care reform, and Young Invincibles is another worth checking out. The group is made up of 18 to 33 year olds committed to making sure the voices, and needs, of the millions of uninsured young adults are heard. Hopefully their website will have more to offer in the future, but for now you can read about their mission and sign up to receive more information.

Its really important that young adults speak up and get involved. Dealing with a serious illness is difficult enough. Trying to do it when youre uninsured shouldnt have to happen to anyone, but does far too often. Our family was in that very position last year when my husband was diagnosed with a recurrence of Hodgkin's Lymphoma. No one should have to scramble to come up with $1500 for additional meds after 8 hours of treatment and blood transfusions, but it happens. The added stresses of being uninsured certainly dont help with recovery or healing!

It seems like the only fitting thing to say right now is from the words of my husband, Rick: "I'm involved, you should be too." Quit complaining, start doing.

Thursday, July 30, 2009

What we're up to....

Things may seem a little bit quiet around here but I assure you its a flurry of activity here at BRICKS headquarters (aka "my kitchen table").

The last couple of weeks have been spent doing LOTS of paperwork. Im currently working on a grant proposal to try to get some funds to work on the booklet I had mentioned in a previous blog post. In addition to that, Ive also been working on getting the ball rolling with making BRICKS a real, nonprofit entity. This involves lots of IRS forms (ugh) and lunches&brunches with prospective board members (not ugh). Ive also bought a couple of domain names and registered the full version of the "BRICKS" name with the state.

I started keeping a time sheet for myself, just to try and keep track of how much Im working and what Im working on. Its sort of like working a part time job when I get home from my full time job (in addition to being a full time mom). But things are moving and feel positive, thanks to the words of encouragement from so many of you. Please continue to tell your friends about what we're doing, and come back often for more updates. Hopefully there will be lots of great things to share very soon!

Saturday, July 25, 2009

BRICKS now listed on Be Well!

Yesterday I got a very happy email from my friend Jude Vachon, the hardworking lady behind the Be Well! zine, letting me know that BRICKS for Young Adults had been added to the Cancer Resources section of the Be Well! website.

Be Well! was started in 2005 in Pittsburgh, and is a resource guide offering a wealth of information for individuals who are un- or under-insured. Everything from dental care, to womens health, to resources for the recently unemployed are available in both the print version of the booklet and the web site.

Wednesday, July 22, 2009

BRICKS now on Facebook

I have resisted for some time, but now you can find BRICKS on Facebook. If you're on there, please add us (its sad to see that we have no friends!)

Bricks Pgh
Bricks Pgh
Create Your Badge

Wednesday, July 15, 2009

A note about today....

Those of you who know me know that today would have been, is, the 2 year wedding anniversary of Rick and I. Of course my emotions have been all over the place, and there is some sadness today, but I feel the need to explain something very important about what today means to me.

When Rick and I decided to get married (and plan a wedding in 6 weeks) we knew two important things- that we wanted to be married to each other, and that there was no sense in waiting (who knew how much time we had, even though he was cancer free at the time) AND that our marriage was about a very private, personal moment between the two of us. We decided to have a 'wedding' despite really wanting to focus on our intimate commitment to each other, hence the exchange of our vows being done in a near whisper, for only each other to hear (yes friends, that was on purpose).

So today as I think back about our wedding day, I want to hold that moment as it was intended- as a quiet, intense, personal moment between my husband and I. I want to remember and honor what that means. My husband lived a very public life in the art world, and shared himself with so many people. But he made it abundantly clear to me that being married was something only he and I shared, that allowed me access to him in a way no one else had or ever would. Today is my day, and Rick's, to celebrate what we found in each other, and not even death can take that away from us.

Monday, July 13, 2009

BRICKS is on MySpace!

Just in case you needed one more way to keep up with us, I added a MySpace page for BRICKS for Young Adults. Come on, be our friend. Click here to add us!

Saturday, July 11, 2009

BRICKS added to i2y's Stupid Cancer Blogroll!

I'm Too Young For This!

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!

Friday, July 10, 2009

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, 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.

Wednesday, July 8, 2009

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.

Thursday, July 2, 2009

Planet Cancer

Planet Cancer is an online community for young adults with cancer, as well as their loved ones. PC has tons of information on their main site, and also has a myspace-like social networking site/message board. Their "Real World Advice" section offers links to research, articles, grant & scholarship information, and more.

Recently, folks from Planet Cancer participated in a discussion at the White House regarding health care reform, you can find more about their visit with the President on their web site.

Monday, June 29, 2009

Mission complete- Registry joined!

So I thought Id share my journey in joining the National Marrow Donor Program Be the Match registry. I hope some of you did this and saw first hand just how EASY the whole process was, but for those of you who didnt, heres how it went down after my kit arrived on Thursday.


Swabbing the inside of my mouth (repeat x 4)

Label each swab then place in holder

All done!

Seal the holder

Drop it in the mail!

It was seriously the easiest thing to do, and SO gratifying and exciting to drop the envelope in the mailbox. It took me longer to make this blog post than the entire process took!

For information on how to join the registry, go to and learn how you could BE THE MATCH that saves someones life!