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!

Grants for Cancer Survivors

The SAMFund for Young Adult Survivors of Cancer has opened up its Letter of Intent for this year's grants and scholarships. The SAMFund provides financial assistance in the form of grants to young adults between the ages of 17 and 35, who have completed treatment and are moving forward in their lives.






The broad mission of Surviving And Moving Forward: The SAMFund for Young Adult Survivors of Cancer is to assist cancer survivors in the United States between the ages of 17 and 35 with their transition into a successful post-treatment life.

The foundation will distribute grants and scholarships in an effort to enable survivors to pursue their educational or professional goals, as well as offer outreach and information about the post-recovery transition to those approaching the end of treatment.

The SAMFund seeks to provide the most extensive support possible, and to help young adult survivors move forward with their lives after cancer.

To learn more about eligibility, grant awards and to apply, click here.

"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.

After 3 months...

...its still ok to cry.

I know most of my posts are of the more informative variety, but as my dear friend Kairol pointed out, no one talks enough about dying or grieving, and maybe its ok for me to do that too.

So, I spent a lot of time this week crying. And I think thats perfectly ok. Some weeks are going to be harder than others, and I think Ive been really patient with myself when it comes to how Im mourning the loss of my husband.

I stay away from words that refer to grief as a "process"- that somehow implies that some day you'll be done with it, and I dont think thats a fair expectation to put on yourself. Coping with the loss of your spouse isnt a puzzle that you can put together and finish. I see it as more of a place, a marker in the line of your life. As time moves on so do you, walking quickly or slowly, progressing at varying pace, moving ever so slightly away from that place. No matter what though, that place is always there, just over your shoulder, always a part of you. The goal isnt to be done with it, to get away from it, but to keep walking.

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!

Invaluable assistance paying for Medications

Everyone knows that medication costs are outrageous, especially for the uninsured. When Rick urgently needed a medication to treat an infection, with the cost of $150/day, we were in a panic. The doctor was recommending a minimum 10 day supply of the meds, or he would have to admit Rick to the hospital again. Fortunately, thanks to the Be Well! zine we knew about a website called NeedyMeds that helped us find a program that would pay for part of the cost of the medication. Rick's oncology nurse wasnt even aware of the program!

NeedyMeds is a 501(3)(c) non-profit with the mission of helping people who cannot afford medicine or healthcare costs. The information at NeedyMeds is available anonymously and free of charge. Users of the site can search by medication or drug company name, as well search to find disease-based assistance programs. There are even resources on the site for patient advocates, healthcare providers, and those with insurance.

If you or someone you know is having trouble paying for their medications, be sure to check out NeedyMeds to see if there is a program that may be helpful!

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.