Friday, January 29, 2010

Grants for Cancer Survivors

Many visitors to my blog land here because they are searching for information on grants for cancer survivors, and I previously did a short blog post on the subject.

I've found that a lot of organizations offer college scholarships for cancer survivors, but what about grants for life expenses? How about money to pay for medications, or food, or babysitters? The Leukemia & Lymphoma Society offers various patient financial support services, but the amount they are able to give patients has decreased significantly over the last few years.

In our time of greatest financial strain, we found that making an Amazon wish list was AMAZINGLY helpful. Friends want to help, but arent sure how, and help came from near and far when we posted our list. Just having food items and cleaning supplies land on our doorstep every couple of days was so wonderful- less things to pick up at the store and less money to spend when nearly every penny was going to medications and keeping a roof over our heads.

What tips, trick, organizations, etc have been helpful to you? Post 'em here for everyone!!

PS- For more on this topic, visit the blog of my good friend Kairol, who recently blogged about the financial impact of cancer.

Sunday, January 24, 2010

Its oh so quiet....

But only in blog-land.

I've not posted anything for a week, and that may imply that not much is happening, but that couldnt be farther from the truth!
This past week has been very busy with lots of good things for BRICKS.

All of the submissions for the booklet are in- FIFTEEN of them in total (I was shooting for 12 so you can imagine how pleased I am). Now we're moving on to phase 2 of the booklet- layout and editing. Then its off to the printer, and hopefully booklets will be in my paws by early March.

Speaking of March, there are lots of amazing awareness/fundraising/celebratory events in the works, the details of which I will be posting VERY soon so you can all mark your calendars.

Speaking of calendars, how about a snazzy Google calendar of BRICKS for Young Adults events, so you never miss a thing? Im going to do my best to keep this up to date, I promise!

More soon, all of the babysteps of the last few months are about to turn into giant leaps!

Sunday, January 17, 2010


10 months ago today my husband died. 10 months ago right now, I was waiting for hospice to come, listening to the clicking sound in my husband's throat, knowing it wouldnt be long. After a long, terrible, restless night, he finally looked like he was asleep. He said goodbye as my son left for school, never opening his eyes, and in a barely audible whisper told him that he loved him. An hour later, he was gone.

Ive been dreading today more than any other day, truth be told. The idea of "10 months" as a marker in my relationship with my husband has been very important. We had been married for 10 months when the diagnosis of a recurrence came to us. He died 10 months later. And now, he's been gone for 10 months. Three phases, three different pieces of a marriage.

I cant say that I am moving into some new, fourth phase. I dont know yet that Im ready to let go of it all completely or that I am moving on past my grieving. Sometimes I feel like I will always mourn him, and I think thats ok. What I can say is that I can remember things we did, I can talk about him, and I can talk to him all without crying. Oh I still cry over him sometimes, believe me, but its a little easier to remember him and feel happy when I think about the things we did together.

I often cant believe so much time has gone by. In just two more months it will have been a YEAR already. An entire YEAR since he died. I dont remember a lot of the last year, honestly, or know quite how Ive made it through. I think its a coping mechanism, this "auto pilot" mode Ive been operating in. But when I stop and look back, over the last 10 months, I can see how much Ive accomplished, how far Ive come. I can truly feel like Ive honored his life by working hard and trying to do something good for others in our situation through the work Ive done with BRICKS and by simply not spending my entire life curled up in a ball on the couch (no matter how much I may have wanted to).

So today, on this anniversary of sorts, I can close my eyes, feel my heart well up with love, and say "thank you" to the brave, beautiful man who changed my life. I will try to replace sadness at the loss of his life with gratitude for having the chance to share part of it with him. I know that I will carry him with me into the next 10 months, and the 10 after that and on and on.

Thank you, Rick. I love you.

Thursday, January 14, 2010

Egress Press

2001, Hand Drawn Photo Lithograph
by Rick Gribenas

Today I wanted to give a little shout out to my friends at Egress Press & Research, a fine art publishing and research component of the Printmaking Area of Edinboro University of Pennsylvania’s Art Department. When Rick attending Edinboro, he had the pleasure of working with John Lysak, master printmaker and a director of Egress Press.

I was pleasantly surprised to see a link to this here blog on my husband's little profile on the Egress Press website, though I suppose I shouldnt have been. EPR and several of its artists, including the likes of John Lysak, Jay Ryan and Mike Budai, have not only been amazing friends to both my husband and I, but have been great supporters of our efforts. From donating items to the Blood & Cupcakes donor raffles the last two years, sharing a meal or cup of coffee, or a thoughtful email just to see how we're doing, these folks not only make amazing art, but are all around amazing people.

So big thanks to our friends at EPR, for every little thing. You inspired and influenced Rick in both his work and life, and our gratitude is immeasurable.

Wednesday, January 13, 2010

Wednesday = Workday

Wednesday nights seem to be the best in terms of productivity, for me. My son is at his dad's house, and I can sort of gear up all day to churn out lots of work in the evening. My only interruptions are the two chihuahuas running around and remembering to take out the trash. Sometimes I even remember to feed myself, its amazing.

Tonight Im trying to finish up some paperwork for my funding for the booklet, collecting stories and bios from contributors, and coming up with a NAME for this thing. That part has proven to be even harder than writing the grant application. Ive been working on it since I first came up with this idea. The name is SO important- I want to do future editions of the booklet and dont want to print a few thousand of them only to realize the name I gave it is cheesy or cliche or just sounds ridiculous. I have to be able to live with it, and for a long time.

The resource guide has come together really well. The submissions are trickling in and I think I will get a couple more before the week's end. We should be all set content wise. But what to CALL it? This is your booklet too, folks, Im open to suggestions on what we should call this. This entire project wouldnt be possible without all of you, your input on this part is more than welcome!

Saturday, January 9, 2010


Several 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.

Below you'll find all of the information about the Pittsburgh release event. Not in Pittsburgh? No worries- Jim has been hard at work organizing release shows in cities across the country. Visit the web site for more info. If you are in Pittsburgh, come to this amazing celebration, pick up some info, and support a great cause.

Start Time:
Thursday, February 18, 2010 at 8:00pm

Rex Theater 1602 East Carson St Pittsburgh, Pa 15203

Join Distortion Productions and Metropolis Records for the monumental release of one of the biggest compilations in scene history...Electronic Saviors:Industrial Music To Cure Cancer.

CDs, T Shirts and stickers will be available. There will be performances by Saviors artists DEVIANT UK, INTERFACE, AGNES WIRED FOR SOUND and BOXED WARNING. Tickets are 10 in advance and 12 at the door. This is an all ages event.

BRICKS for Young Adults will have a table and Distortion will be taking donations to aid Jim with his medical bills. All proceeds of Saviors CDs will go to the Foundation for Cancer Research and Wellness in Harrisburg, PA.

Wednesday, January 6, 2010

hey jenn..

I bailed on going to the funeral home tonight for Jenn. I thought about it all day, and at one point seemed to hear this voice in my head say "I wouldnt be there either if I didnt have to be." I like to think that was Jenn giving me permission to stay home and do this instead. So, Im going to write back to her email, and hopefully feel a little better about all of this in the process.

hey jenn..

christmas was ok, thanks for asking. you know, it was ok as it can be, without my cute husband there, as excited as a little kid, making the whole day feel special and fun. it was weird to not have presents under the tree for me. but we had a nice time, jaden and i. i let him stay in his pajamas and play video games ALL DAY. we had some visitors but mostly it was quiet and enjoyable.

im glad you read Kairol's blog and that what Rick had to say resonated with you. i try really hard to not use the word "battle" when i talk about Rick's experience. especially when i talk about his death. ive replaced "lost his battle with cancer" to "died after living with cancer for nearly ten years". to say he lost a battle just sounds like he was waiting around to die, and thats obviously not true. he did more living in those years than a lot of people ever do. he made decisions about his health and ultimately, his death, and i respect every one of them. he had a job to do, and he did it, and i couldnt be more proud of him.

anyway. im really excited that you and john got involved in what im doing, and i appreciate your enthusiam to help beyond what you wrote for the booklet. its a wee bit cynical, but not too bad ;) its your story, and its honest, and i think its great. i feel really honored that you were so open and honest and that you worked up the guts to write it. i know it couldnt have been easy. i hope you know that just writing that story was such a giant contribution. its everything. it helps me realize a vision that i have for this booklet and what it can be for people. and that, my friend, is more than enough.

you know, i had this really intense moment at Rick's viewing in March, where i realized that the entire funeral bit is so much more for the living than the dead. i went through the motions and spent most of those two days comforting other people. i mourn and grieve in my own way, every day, and feel like i honor him as much as i possibly can through the way i live my life. i feel pretty confident that you get why im at home tonight, and not at your viewing. this is how i knew you, these emails, words, and it seemed like the most fitting way for me to say goodbye. if you run into Rick up there please give him hell for not coming around more often, i miss him like crazy.

thanks again for coming into my life, im real grateful to know you.


Tuesday, January 5, 2010

He no longer lives entirely among us

And yet, he lives.

The title of this blog is also the title of a song by Antennacle, the sound ensemble Rick was in with Nathan Martin and Eric Wood. For Rick, a lot of what he did in Antennacle was about participating in an ensemble setting, while ensuring that each contributor had a clear voice. The goal was to create something beautiful, to listen, to force the listeners to go somewhere new. Rick took each sound so seriously- every note, drone, buzz and blip had to mean something. I never necessarily understood every single part, but always felt moved by what he created.

In a similar spirit of cooperation and creation, a dear friend of ours, Emily Hope Price has embarked on a journey of her own- to create 365 pieces of music in 365 days. Emily is an accomplished cellist and was a student in one of Rick's sound art classes at Carnegie Mellon University many moons ago. She is also a first class lady and a joy to be around. To launch her ambitious project, she revived an old collaboration with my departed husband, and created a new beautiful piece of work that you can listen to on her blog, The 365 Project.

The piece itself is short and perfect, it does exactly what it needs to do and nothing more. At the very end, you can hear Rick's voice. When Emily shared this clip with me over the weekend, it was the first time I had heard my husband's voice since he died. It brought tears to my eyes. Not only at the sound of it, but at the simple beauty of the words he says. “I get you. I guess I was just trying to listen.” A reminder, a lesson, from a young man so wise beyond his years.

If you listen, he lives among us. Not entirely, but he is here, as he knew he would be.

Monday, January 4, 2010

With heavy heart....

r.i.p. jenn g xoxo

Starting a nonprofit comes with a lot of worry- you worry if your mission & services are needed enough to warrant your work, you worry if you can raise the funds you need, you worry if you can pull it off at all. For me, there was an additional concern when starting BRICKS for Young Adults- could I handle working with people with cancer, after just losing my husband to the same disease?, could I handle it if any of them died?

Sadly, today I had to face that very question. I was taking my lunch break at work and checked my email, only to find a message from one of the contributors to the booklet Im working on, John. His girlfriend Jenn, a young adult cancer patient and fellow booklet contributor, had passed away. I was filled with more grief than I could have imagined, given the fact that she and I had only ever exchanged emails. I was angry that Id never had the chance to spend time with her in person, and that I had been lazy about replying to the awesome email she sent me last week. John & Jenn supported what I was doing- they wrote amazing stories for the booklet, John came to the blood drive, and earned a cupcake to take home to Jenn who wasnt feeling well enough to come out that day. We swapped emails over the last few months, and it was good to know they understood what I was going through AND what I was trying to accomplish.

Id like to repost here the last email she sent me. I think it says a lot about who Jenn is. And maybe, tomorrow, or the next day, I'll write back to her here. Its never really too late, is it? And maybe, just maybe, if we all read it together, the universe will make sure she hears it.

hey you
Jenn Gaugler December 29, 2009 at 9:59pm

i hope christmas brought at least as much (if not more) joy the sadness for the two of you. as john mentioned, we've been thinking of you a lot.

I read your guest blog on "Everything Changes", which led me to the the author's (what i assumed to be edited) conversation with Rick. i almost fell over when i got to the line (and i paraphrase here) "Cancer is not a battle or a war for me. It's more of a second job." that's how i've felt since my date of diagnosis. i once had a batshit crazy psychiatrist suggest that i visualize and conquer my tumor. "it really works!" my response to her, through tears of hysterical laughter, was that if this method of self actualization actually worked, then how come she had yet to visualize and conquer her love for polyester. ten minutes later she told me i was a perfect candidate for shock therapy.

i've always felt funny telling people about my illness(es). they usually take the Susan G. Komen "battling this horrible disease" route. i've never been a fan of hyperbole, and i'm certainly no hero. i'm just a girl who won the cancer lottery. so i go to "work", i worship at the altar of science, and i hope to god my surgeon got enough sleep the night before he is to cut me open. if one was able to wage war on cancer, you and i wouldn't be having this discussion.

and now for something completely different:

i would be honored to help you in any way i can getting the booklet together, though i am a bit reticent in offering my services. i am due for surgery soon (stupid blood clot has delayed it). my understanding is that the recovery time is rather short, but other factors are at play...i am very weak (i know i don't need to tell you this) and there are days that i consider walking the five steps to the kitchen a huge success. that being said, i really, really want to help. perhaps when can come up with a way to work around these things. it would mean a lot to me to have the opportunity to be involved in this project, if only to make up for that incredibly cynical piece i wrote for you. :)

anyway, i must now continue my search for a primary care physician who actually handles more than bronchitis. know of any good ones?

thinking of you,


Im thinking of you too, Jenn. Im thinking of you too.

Saturday, January 2, 2010

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. 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.