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

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

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!

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!

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.

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.



Supplies!



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 www.marrow.org and learn how you could BE THE MATCH that saves someones life!

Save the date- November 7, 2009

Blood & Cupcakes 2
2nd annual replenishing blood drive to benefit
Central Blood Bank
in memory of Rick Gribenas
Saturday, November 7, 2009
9am-3pm

at

Modern Formations Gallery
4919 Penn Ave
Pittsburgh PA 15224

More information coming soon, but I wanted to get this out there so those of you planning to donate again (or for the first time) this year could mark your calendars!

"Widow" is not a dirty word.

It came to my attention very recently that the term "widow" is not an option on Myspace when selecting a "Status" option in the general user info. Im really bothered by this because I feel that the other options dont apply to me. That being said, I feel like I need to reclaim the words "widow/widower".

I think people are afraid of it/us. Sure, our new status is difficult and comes with a lot of work to do. That doesnt mean we are some strage, mysterious creature, not the be trusted or gotten close to. I like to think that it says I was a part of a loving, special relationship, that ended not by choice but by circumstance.

To my friends I say, "Believe me." When I tell you I am ok you MUST trust that at that very moment I am. Every day is new as I work through this. I have good days and bad days. Some days all I do is smile when I think of my husband, other days I can only cry. This doesnt mean that when I tell you I am ok, Im really lying or covering up my feelings to spare you the details. It simply means that I am ok. Not awesome, not wonderful, not wallowing in misery. When those times come I hope you'll be there too, but when Im ok trust me and let me be ok for as long as it lasts.

To the cancer community I say, "Dont ignore me." Bereaved spouses seem to have so few resources. Sure, my partner's story may not be an American Cancer Society commercial waiting to happen, but its mine, and it connects me to the larger community of those dealing with cancer in so many capacities. Im not going to rain on your parade of positivity, nor is my "widowdom" any more contagious than the cancer that put me here. I shouldnt get kicked out of the club because my story didnt have the happiest ending. Its still a story of hope, love, trust and living.

Being a widow is now a part of my story, a learning experience that makes me who I am. I learned this acceptance from my husband- that every experience has value, and it only has the power over you that you give it. It has happened, you have no choice but to accept it, so now what do you do with it?

You all already know my answer to that.

More about the Marrowthon

I just completed my registration for the Be The Match registry, and my kit is on the way!

I only think this is noteworthy because I am SCARED BEYOND REASON of donating marrow. Hear me out on this one.

So 5 days before Rick died he had a bone marrow biopsy. The procedure was not foreign to him, he was a pro at it. Me, on the other hand, I had never seen one done. Not generally being put off by blood and guts I figured I could handle it. WRONG! I was ok when they jabbed the needle around in Rick's back to distribute the local pain meds. I was ok when the doctor started putting the needle in his back to obtain the biopsy and Rick said he could feel it. I was ok when the doctor plopped the globby specimen on the slides right in front of me. When the doctor said "This is no good, we're going to have to do it again" I hit the floor. Passed out in the exam room. From what I can gather, they went ahead with the second try and left me on the floor. When I came to Rick was sitting up on the end of the exam table, calm as could be, and I was surrounded by nurses.

As awful as that experience was, and knowing that one possible means of donating through the registry could be a marrow donation (as opposed to a peripheral blood stem cell donation, which is done much more like donating blood, and comparatively a piece of cake), I still signed up. I am, honestly, nervous about the prospect of being a match for someone. HOWEVER- knowing that by doing so i could safe someone the agonizing grief of losing their spouse or life partner that i have been going through over the last 13 weeks, I hope to some day get the notice.

I hope that some of you who are reading this have already joined, but for those who havent, please consider it. If I can put my fears aside I hope some of you can do the same with whatever is keeping you from joining. You still have a week to sign up for free, but the registry will ALWAYS need you, even if you arent ready now.

MARROWTHON!!!!

The National Marrow Donor Program has kicked off a "Marrowthon" in order to try to recruit 46,000 new donors for the registry. From June 8th to the 22nd, NEW donors can register for FREE (doing so online/via postal mail typically costs approximately $52).

From their website:

Bone marrow transplant is a life-saving treatment for people with leukemia, lymphoma and many other diseases. First, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then a donor's healthy blood-forming cells are given directly into the patient's bloodstream, where they can begin to function and multiply.

For a patient's body to accept these healthy cells, the patient needs a donor who is a close match. Seventy percent of patients do not have a donor in their family and depend on the Be The Match Registry to find an unrelated bone marrow donor or umbilical cord blood.

The first step to become a bone marrow donor is to join the Be The Match Registry. Doctors around the world search our registry to find a match for their patients. If a doctor selects you as a match for a patient, you may be asked to donate bone marrow or cells from circulating blood (called PBSC donation). Patients need donors between the ages of 18 and 60 who meet health guidelines and are willing to donate to any patient in need.


For more information, or to sign up for the registry, click here.

The entire process will take a few minutes of your time, and could literally save someone's life.

I hope some (many) of you will take advantage of this opportunity. Please leave a comment if you sign up, so I can thank you personally!

Theres still time!

Look at that beard! I wasnt sure they were going to do it, but the Penguins are still in the running for this cup, or whatever you call it (ha!), which means you can still pledge your dollars to the Penguins Beard-a-thon, with proceeds to benefit the Mario Lemieux Foundation.

Surely my brother will kick my butt for posting his picture, but Im proud of him for participating in this, and you can all vote for him and his play-off beard by clicking here.

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.