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Thursday, August 23, 2012

Be A Match!

Me and Robin Roberts! Why do I look so short?

Yesterday I had the opportunity to appear on Good Morning America and model an outfit inspired by Taylor Swift's fashion style as part of a Redbook fashion segment. My dreams of being on TV are coming true, one step at a time :) 

I really hoped I would have the chance to meet Robin Roberts while at GMA (my mom and I both love her!), and I mentioned to the GMA producer that I am living with Hodgkin's Lymphoma and have undergone a transplant, similar to the one that Robin will have to endure for her blood disorder, MDS. I was so sad to learn about Robin's MDS diagnosis, she had just reached her 5 years as a breast cancer survivor and it just doesn't seem fair that she should have to go through something else! It's scary, but sometimes the chemo and radiation from one treatment can cause a secondary cancer. They tell you this when you are first diagnosed, but you don't have a choice, you have to proceed with treatment to kill the first cancer, so it's hard to wrap your head around the possibility of a second cancer. MDS is considered pre-leukemia and while it's not cancer yet, her doctors are being aggressive and proceeding with a bone marrow transplant with her sister as the donor. 

Unfortunately my brother Garrett wasn't a match for me (I just knew he would be, God's way of showing me how I should have been nicer to him as a child!) but I was blessed enough to find a matched unrelated donor. I've always heard that people of color, especially black people, have a hard time finding donors. But when I mentioned that to a transplant doctor at Mt Sinai (because I do my research!), he said, "that's not true!". Um, ok. That surprised me because that is what the media always says, but who knows? I actually matched with 3 people and one is a 10/10.  As it turns out, you don't have to be the same race to match, so my donor could be another race. Regardless, there is a lack of minority donors in the registry and many people have died as a result of not finding a match.

Ironically, right after I sashayed around Times Sqaure in tiny red shorts (see video below!), Robin interviewed a woman who had a bone marrow transplant a year ago after her leukemia diagnosis, and she was meeting her donor for the first time. What a crazy coincidence! The woman happened to be black and her donor was a white male. I watched the interview in the GMA green room feeling amazed and hopeful, yet also sad at the possibility that I may have to do another transplant. Right now we don't know when and if I will, but the thought still hangs over my head. It was great to see the donor and the recipient meet for the first time...he literally gave her life! What an amazing gift.

Afterwards, the producers told me to try and grab Robin as she walked back to her dressing room and thankfully I did. I quickly told her my life story and made sure to tell her that my dad is from Mississippi (like she is) and my mother prays for her every day. She hugged me and thanked me for telling her my story, she was so warm and sweet, and of course I asked her to take a picture with me!

Robin is lucky to have her sister as a donor, the woman on GMA was lucky to have a donor (see that video below) and I am lucky to have a donor as well, but not everyone is so lucky, so please sign up for Be A Match and join the national bone marrow registry! It's so easy to do (I signed up in college! Of course I'm not eligible now though…sigh) and it's a fairly easy procedure…plus you get to say you saved someone's life. How cool is that?

My appearance on GMA:
http://gma.yahoo.com/video/music-26594262/get-the-look-taylor-swift-s-fashion-sense-with-conor-kennedy-30351888.html#crsl=%252Fvideo%252Fmusic-26594262%252Fget-the-look-taylor-swift-s-fashion-sense-with-conor-kennedy-30351888.html

Bone Marrow Donor:
http://gma.yahoo.com/blogs/abc-blogs/cancer-survivor-meets-her-bone-marrow-donor-first-121314673--abc-news-health.html



Thursday, August 2, 2012

#IStandUpFor...

Today I got an email from Stand Up To Cancer, an organization that I subscribed to in 2008 after watching the 1st annual telethon on TV in tears.  I remember seeing Patrick Swayze looking very frail but determined to share his story.  He spoke about how important it was for scientists to work together to find cures for cancer, and how the fundraising efforts will help them work faster to develop new treatments. From celebs to regular people, everyone who spoke about their own battle or a family members' battle really hit home with me. I wasn't oblivious to the tragedy of cancer at the time, but it still felt like something that happened to "other people," because I had never personally watched someone go through treatment. But I wanted to help, so I donated money to the cause and joined their email newsletter database.

Flash forward a year and I am diagnosed with cancer. Strange how life works sometimes...I wonder how many other people donated and then were diagnosed themselves? The email newsletters that I would get every few months, detailing groundbreaking triumphs in cancer research now had a whole new meaning.  Now I was a recipient of the dollars that went into cancer research, research that created drugs to save my life. I often think about the day I watched the first broadcast, horrified at what some people had to go through, feeling so bad for them, but never imagining that it could happen to me too.

Yet here we are. I'm a great example of the fact that cancer can happen to anyone.  No sex, no race, no religion, no class, and no age is exempt. It feels like it can't happen to you...but sadly I'm here to say that it can. As I struggled to identify myself with the newfound cancer community, I thought about buying one of the super cute Survivor t-shirts that Stand Up To Cancer sells on their website, but I wasn't sure if I was ready. It's a pretty big deal to tell people you have cancer. Most people aren't expecting a 20-something woman who looks healthy to say they have cancer. Their eyes get big, their body language changes and they start to search your body for signs that you are "sick." So I tried to avoid it as much as possible, pretending that I was healthy to avoid seeing those sad eyes.

Now as I've become more open about my cancer journey, I realize how important it is to share your story. The only way I knew half the side effects/symptoms/issues that come with treatment is because of blogs, websites and Facebook groups. Other young people affected with this disease shared their experiences and often gave tips about how to get through it.  People that I never met in person instantly became like best friends, they made me feel like I wasn't some freak of nature who managed to get cancer. And I'm so grateful to them, because someone finally got it! Someone understood the agony I felt, the fear, the worry, the stress, the anger of a diagnosis of cancer in your 20s. I felt like I wasn't alone. Thankfully there are amazing organizations that cater to young adults like the I'm Too Young For This! Foundation (I love that name, it's sooo true) and they have events that focus on just living! Imagine that? No matter what you're dealing with in life, you just want someone to get it. (and I definitely need to get a Survivor shirt now!)

Stand Up To Cancer is an amazing organization that has raised an incredible amount of money for cancer research (Katie Couric is a co-founder of the organization--Katie, can I come to your show to talk about cancer??) and they are running a #IStandUpFor Photo Contest, where the question is, "who do you Stand Up for" when it comes to cancer. I entered the contest today, stating that I stand for myself and all the young adults out there who are diagnosed with cancer and feel alone because "it's not supposed to happen to us." But it does, and we need support just like anyone else. It's sooo important! The grand-prize winner will attend this year's Stand Up To Cancer event. The organizers choose the semi-finalists and then the public gets to vote (why does this feel just like the Live! with Kelly contest? I guess I like to enter contests!) so please check out my entry and make comments! (You have to be logged into Facebook to view)

http://apps.facebook.com/istandupfor/contests/261680/voteable_entries/55664170