Team Hairy Shearers

As you have probably noticed by now, I’ve been blogging a lot about childhood cancer awareness. My posts so far on the subject have been prompted by calls to action from Rockstar Ronan. Ronan Thompson died from neuroblastoma when he was four years old. His mother, Maya, has made it her life’s mission to raise awareness for childhood cancer issues. These efforts include a petition to President Obama to light the White House gold for Childhood Cancer Awareness Month in September, similar to what they do in October for breast cancer awareness. In my last post, I mentioned that Ronan’s foundation had asked for photo submissions from adult cancer survivors stating their support of the White House effort for use in a social media campaign. Over the weekend, I did just that.

photo (23)

My petition to the president.

However, what I really wanted to do today was spotlight a good friend of mine, Will Monson. Will is an extraordinary example of how there are everyday things people can do to make a huge difference in the world. Will happens to be very passionate about several cancer related issues. Will donates blood approximately five-six times a year. Over the years we estimate that he has donated a minimum of 20 pints of blood, and has donated platelets about eight-nine times. As the universal donor (AB+), Will’s commitment to blood and platelet donation is incredibly helpful to patients undergoing cancer treatments and others that are in need. Over the past three years, Will has also become involved with an amazing organization called St. Baldrick’s Foundation, a foundation that raises awareness and funds for childhood cancer research.

In his own words, Will explains more about his relationship with St. Baldrick’s.

Team Hairy Shearers

It’s funny how quickly one can bathe when you don’t have any hair. Yet every March I reduce my normal 15 minute shower by half. This hairless journey is because of a program called St. Baldrick’s.

St. Baldrick’s is a charity that raises money to fund childhood cancer research. However they have a unique way of raising money. Throughout the year, various cities host a sponsored shaving of people. Teams and individuals put their follicles on the chopping block to show their solidarity for young children who lost their’s through cancer treatments.

Three years ago, I was sitting in a dive of a bar with a few of my friends. Through the course of the evening and after many quips of playful insults and colorful banter, my friend Geoff mentioned he only gets one haircut a year. This notion seemed absurd to me. Geoff is the pinnacle of computer programmers. Skinny, lanky, glasses, and a mop of a haircut. Upon hearing this, I was in no bit surprised at his omission, to which I suggest it was his yearly flowbee hair cut. Yet to my surprise, he simply said he was shaving it bald.

Over the course  of a PBR, a high scale specimen of beer, Geoff recounted how over the past three years, he has participated in this program. He talked about how his friend and he have been slowly raising more and more money for this charity– St. Baldrick’s. As he told me more and more about this program, my interest peeked from being curious about donating to a desire to participate. An itch in my scalp had started (I bathe regularly so it was due to a philanthropy spirit, not for something requiring a flea bath.)

That first year was exciting. One of my closest friends, Jacob, had pulled an “i’ll do it if you do it,” and, for the record, I was already sold on the idea. Over the course of six weeks, I set out in all the social media channels to elicit donations. Facebook and Twitter was my best means of getting the word out. I had set a goal of $300 the first year in fear I was not going to raise enough. However, my career in marketing proved to be most beneficial in this.

I created a Facebook event inviting friends and family to come watch as I was being shaved. And I also asked them to buy me a beer. I figured since most of my friends were like me and didn’t make a lot, I would ask them to donate the price of one beer to my cause. By my calculations, if I could get 60 people to give $5 that they would have spent on a beer, I would have more than enough to hit my $300 goal. This proved to be exceptionally successful. Not only did I raise my goal, but I passed it by over $135. And, with the other members of Team Hairy Shearers, we raised over $2,500. By the way, all of the guys on my team are avid Simpsons fans and chose to name the team after the long time voice actor from the Simpsons and New Orleans native Harry Shearer.

Well, the big day came and four of us with shaggy mops of hairstyles showed up for St. Baldrick’s. It was interesting how nervous I can get just before I have my head shaved, but I think it was just stage fright. However, as soon as my name was called to be shaved, all my apprehension and nerves disappeared. My fear of looking silly bald was gone. It was in sitting in that chair knowing that I had helped raise money for the fight of cancer in children that calmed me. And my fears of how I would look bald had melted away knowing I could choose to not shave where others were not so fortunate. After that, I haven’t looked back and I look forward to doing St. Baldrick’s every year.

So next time you sit in a bar with some friends, please think about buying me a beer and donate 5 bucks.

Will Monson is a graphic designer from New Orleans who works with Search Influence. He spends his free time playing disk golf, volunteering with the Boy Scouts, and is an avid kickball player. Check out Will and the rest of the Hairy Shearers at their St. Baldrick’s page at: http://www.stbaldricks.org/participants/mypage/588470/2013
426284_10151382712815693_498203978_n
Team Hairy Shearers pre-shave
168519_756311593545_474237632_n
Will in mid-shave to benefit St. Baldrick’s
581127_756313035655_1315758888_n
The team post-shave
Advertisements

Mile 11

As you might have read in previous posts, I’m currently training for a half-marathon with the Leukemia & Lymphoma Society’s Team-In-Training (TNT) program. I had originally planned to run the Nike Women’s Half-Marathon in Washington, D.C. on April 28. However, due to recovery setbacks I decided to adjust my goals to run the Rock N’ Roll Half-Marathon in San Diego on June 3. I went to my first TNT brainwashing session preview party last week, and invited my friend Megan to attend with me. Before the end of the night, the extremely passionate TNT coaches had her convinced to sign up as well! We’re now going to train and fund raise as a team. She’s been a faithful friend to me for more than a decade, and I’m so proud to have her join me on yet another adventure.

291497_10100683764911665_168287_o 3

Megan & I tailgating for the LSU vs. Oregon game at the 2011 Cowboy’s Classic in Dallas.

 

 

 

 

 

 

 

 

 

 

To read more about our team or to make a donation, please visit our TNT page here. You can also follow Megan’s blog at Projects for a New Year.

This topic actually brings me to another amazing friend of mine. One of the people who inspired me to do TNT was my good friend and fellow LSU alum, Amy Brittain, who ran the Philadelphia Half-Marathon and raised money to fight cancer through TNT this past November in my honor. She also generously agreed to do a guest blog post, and since Amy is actually an award winning journalist, I’m truly honored to have her contribute to The Lymphoma Letters!

47387_10100109051881185_2492639_n (2)

Visiting Amy in New York City in 2010

 

 

 

 

 

 

 

Mile 11

By Amy Brittain

I did the occasional 5K, but I wasn’t the type of lunatic, I used to
say, that would ever run any sort of crazy long distance.

As it turns out, I did just that.

When Laura called me with the news of her diagnosis, I struggled to
comprehend her words. We were supposed to be young, in the height of
our mid-20s, enjoying a carefree sort of life. Hearing her speak the
word “cancer” absolutely gutted me.

136_580630420055_1212_n (2)

Celebrating Amy’s 21st birthday in 2007.

I decided that I wanted to do something about it. Not that I could
take away any of her pain, or make her treatments any easier, but I
wanted to feel as if I was doing my part to honor her courage.

That’s when I decided to run a half marathon.

I had heard about Team in Training, a charity that supports
leukemia/lymphoma research, through a work friend. I called and signed
up, pledging that in return for 24/7 coaching and support, I’d raise
$2,000 for the Leukemia and Lymphoma Society.

Brittain-StMartinGeauxteamlaura (2)

Amy & our friend, Victoria, sporting their “Geaux Team Laura” shirts with pride!

And just like that, I was signed up for my race— a 13.1 mile course
through Philadelphia in mid-November.

The trainings weren’t easy. Every Saturday, our Team in Training crew
from New Jersey gathered at an area park to put in our miles. Before
each run, a team member shared a story of inspiration. Some of my
fellow runners shared their own heartaches from relatives and friends
who had lost their lives to blood cancers. I shared Laura’s story one
Saturday, and we dedicated our run in Liberty State Park, with
beautiful views of the Statue of Liberty, to her ongoing battle.

GW1 (2)

Amy on a training run on the George Washington bridge.

When you’re running for a cause, it’s a lot easier to put one foot in
front of the other. It’s also a lot easier to wake up at 5:30 a.m. on
a Saturday morning, knowing that if you hit that snooze button, you’ll
be breaking a promise that you made to commit to a worthy cause.

The race was not easy. But as I donned my purple team Jersey, with
Laura’s name written on the back, I knew that I was going to finish. I
had to, for Laura, for myself, and most importantly, for my teammates.

teamphoto1 (2)

Amy with her Team-in-Training

Around mile 11, it felt as if every muscle in my body was begging me
to stop. I kept going (although I must have looked like a lunatic as I
started to talk to myself for encouragement).

It was only fitting that our grand finish was near the Philadelphia
Museum of Art, the site of the famous steps from the “Rocky” movie. As
I crossed the finish line with a time of 2:36, I played “Eye of the
Tiger” and raised my hands in relief and pure joy. And I thought to
myself, “I am officially retired from running,” and had a good laugh.

29609_10101789519031545_449418006_n (2)

Amy crossing the finish line!

Once again, I’m not a runner. I don’t pretend to be. But I am a
fighter, and because of Laura’s inspiration, I’m proud to say that I
won.

The Old Lady Row

As I mentioned in my last post, I want to spotlight inspiring individuals that have been touched by cancer in some way. Whether they are survivors, have had a loved one go through it, or are otherwise connected to cancer issues, I want to help get their story out there. I know that everyone’s story is unique and there is always something that can be learned from it. Over the past couple of weeks, I’ve sent emails to ten or so friends I knew would have something to contribute to this blog.

My amazing friend, Meredith of NotJustAnArmyWife.com, was the first to respond. Meredith & her husband, Matt, were very supportive during my cancer journey and helped fund raise in my honor for the Leukemia & Lymphoma Society’s Light the Night fundraiser back in November. So it was no surprise that she was incredibly generous with her time and responded to my request. She truly wrote from her heart and I am so grateful she was willing to share her story.

Image

Meredith & her mother, Ann

The Old Lady Row

In the church where I grew up, there was an “old lady row.” I don’t know if that was the official term, but that was what we called it, and that was what it was. My family sat in the row behind them and I spent a lot of time staring at that silvery-blue hair. It fascinated me, but I wasn’t old enough to really appreciate that these women had led long and fascinating lives. I never understood it when my mom talked about how she couldn’t wait to be an old lady and to sit in that row. There were 8-10 of them, some with colorful brooches, all with set perms, and none with a man. To me, it seemed sad. Growing old was a notion I took for granted, as most people do.

But my mom couldn’t wait to be an old lady.

For a time, you are a kid. Then, you have kids. Then, they have kids. These are milestones most people just expect to have. It’s difficult for me to hear people complain about getting old, because I know it’s a blessing denied to so many. Losing my mother was hard. She was the glue in our family, as so many mothers are. Older women relate their struggles with losing a mother. There are so many shared sorrows. The one true version of family stories, all potential advice, even favorite recipes…it all dies with a mother. You start picking up the phone to call her for years after she’s gone. You miss her with every fiber of your soul and countless precious moments are spent wishing she was there.

But there’s something else, when a life is cut short. I didn’t just lose my mother. I lost a future grandmother for my children. I lost the special moments I’d share with her at my wedding. She didn’t see any of her three children get married. She won’t ever be a grandmother. She won’t sit at the old lady row at Aldersgate United Methodist Church. We will never go to her house for Christmas and watch as her grandchildren and even great-grandchildren gather around her to hear embarassing stories about their parents. My kids will never experience her indescribable kindness and gracefulness. They won’t get to see her gorgeous, infectious smile and be comforted by her embrace.

Cancer destroys the parts of life that most people take for granted. My mom was 52 when she died. She had three “grown” children, ages 29, 23, and 22. One day, she’ll be a grandma through photos, prayers and distant memories.

But my mom couldn’t wait to be an old lady.

Meredith Kasenow

Meredith’s mother, Ann Moore, was a career broadcast journalist in Evansville, Indiana.  She was diagnosed with inoperable pancreatic cancer in May of 2007. She kept a blog during her journey, and founded Gilda’s Club, Evansville to help those affected by cancer. She died on July 3, 2009.  

Meredith’s mom also beautifully discussed facing her mortality and her Christian faith on camera. I found it incredibly powerful and it helped me get through the first few weeks of my diagnosis. You can watch that interview here.

I’ve been following Maya Thompson’s blog at RockstarRonan.com since a friend recommended I listen to Taylor Swift’s song “Ronan” after the Stand Up to Cancer fundraiser in September. “Ronan” was inspired by Maya and her son, Ronan, who died at four years old to neuroblastoma. Maya has started a White House petition to make the White House gold to raise awareness for childhood cancers in September, similar to what the White House does in October for Breast Cancer Awareness Month. They need more than 15,000 signatures by February 6 for it to be considered. Please read and consider signing this petition.

A few startling facts I’ve learned from Maya are:
Childhood cancer is the number one disease killer in children.
Neuroblastoma is the most common cancer in infancy.
Neuroblastoma is the most common extra cranial solid tumor cancer in children.
Every 16 hours a child with neuroblastoma dies.
There is no known cure for neuroblastoma.
Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.
Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
5%-7% of all childhood malignancies
about 1 in 6000 children will be diagnosed with neuroblastoma by the age of five
The average age at diagnosis is two
About 25% of newly diagnosed neuroblastomas are found in children under the age of one

ROCKSTAR RONAN

tumblr_mfl6jmM22r1qlauzko1_500

 

 

 

O.k… As much as I LOVE Star Wars, the fact that this petition got over 25,000 signatures, enough to make it to The White House, is a little disturbing to me.

http://www.huffingtonpost.com/2013/01/11/death-star-petition_n_2460265.html

PLEASE PLEASE PLEASE take one minute and sign our petition below. These kids deserve the recognition and the awareness as they are fighting for their lives. Please do it for the kids who are no longer here, who are still fighting, and even the one’s who will be diagnosed in the future. This problem is NOT going away just because it is being ignored. I will be heartbroken if this does not make it to The White House.

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

Thank you all who have signed and shared. Please continue to share with this everyone and anyone.

xoxo

View original post

London Calling…

So, you might be wondering where all my inspirational individuals on the ides posts are. Well, I have plenty of inspirational individuals I’d like to spotlight. However, I decided that I want to go in a different direction with it. Instead of spotlighting celebrities or people I’ve read about in books or online, I really wanted to spend some time spotlighting friends and family that have either been through their own cancer battles, or have been closely affected by someone else’s. However, when dealing with real people with real schedules, guaranteeing a new spotlight on a specific date is pretty much impossible. So, until I get a few spotlights banked up, my genius “plan” is to post them “whenever.”  To borrow a catch phrase from one of my favorite bloggers, T-Rex Runner, “I’m sorry, I’m not sorry.” I am, however, very excited with the new plan, and can’t wait to share these amazing stories with you!

So, in other news, something eventful happened yesterday despite my best efforts to lay around the house and do nothing all weekend. Saturday was off to a great start as I was able to watch a ton of TV: Grey’s Anatomy, Private Practice, about six hours worth of Downton Abbey, two or so hours of Falling Skies, etc. I haven’t had a day to myself to do nothing in many moons, and the fact that I had so much new TV to watch was irresistible. As soon as I finished up my 10th or 11th hour of TV watching, however, I got an email from one of the board members of Team Survivor, a female cancer-survivor/athletic group I’m part of.

As you might recall from my October post, LIVESTRONG, CNN gave a few members of Team Survivor the opportunity to be interviewed about Lance Armstrong and the nonprofit he founded, LIVESTRONG. The interview followed the USDA’s investigation that ultimately led to his resignation from the LIVESTRONG board and being barred from cycling. There’s been a lot of renewed interest in the story because earlier this month Lance Armstrong announced that he would be appearing on Oprah this upcoming Thursday, leading to much speculation that he will finally do what he has avoided for more than a decade and confess to doping. The actual interview happened today in Austin, and all reports seem to confirm that he did confess and apologized to LIVESTRONG staff.

The email I received late Saturday night from Team Survivor was actually to tell me that a reporter with the British NBC affiliate ITV had found my blog, saw the CNN interview, and wanted to interview me about my experience with LIVESTRONG. I got in touch with him the next morning and, long story short, I found myself a few hours later sitting on my couch having a nice chat with Steve Scott in front of a camera. With mythic speed, I managed to squeeze in church, a hair cut, and a mad dash house cleaning in those few hours. A news producer named Will is actually the one who contacted me and set everything up, so I didn’t realize until after they left that I had been interviewed by someone with his own Wikipedia page, who had also interviewed the likes of Princess Diana and Nelson Mandela. Pretty surreal!

I mainly discussed thoughts I’ve already expressed on here. I said that while I hope he comes clean and apologizes if the allegations are true, it really doesn’t matter to me one way or the other what happens in the Oprah interview because for me, its never been about Lance Armstrong– the athlete. Speculation about his drug abuse had been rampant long before I became involved in the cancer community, and I had already accepted it as a probability (albeit part of me always wanted to give him the benefit of the doubt.) However, I am very grateful to Lance Armstrong– the cancer survivor. He not only had the platform to raise awareness for cancer, but he used it to form an amazing organization that empowers cancer fighters around the world. I discussed the many ways LIVESTRONG has helped me the past year, programs that my friends have benefited from, and stated that I hope LIVESTRONG doesn’t suffer for the choices Lance Armstrong made in his career.

I also used it as an opportunity to discuss young adult cancer. Every year there are 70,000 new diagnoses in the 15-39 year old age group, the only age group not to see improvement in survival rates since the 1970’s. Lance Armstrong was my age when he was first diagnosed, and LIVESTRONG has been instrumental at starting and maintaining a dialog within the cancer community to address why people my age get lost in the shuffle, through the Young Adult Cancer Alliance and other programs. Hopefully I didn’t say anything dumb, but I guess we’ll find out in a few days! The story is going to air in the UK on Wednesday, and I should have an online link by Thursday or Friday to share with you. I imagine my interview will be pretty short, but its still very exciting nonetheless!

The three Brits (News Producer Will, Steven Scott & Ben the Cameraman– who looked just like Matthew Perry from Friends) were all extremely friendly and seemed genuinely interested in what I had to say about LIVESTRONG. They had research me pretty well and personalized the interview. All in all, the experience was really incredible. Before and after the interview we chatted about my study abroad trip to the UK, Ireland & France in 2008 and discussed the bipolar Texas weather (it went from the 80s to 40s overnight.) I even gave them a crash course in college football in the States.

Despite the sadness of the situation, I’m glad I had the opportunity to share my story and raise awareness to fight this disease, and I hope other cancer fighters are out there doing the same thing!

Since Rene & I are the worst at taking photos, I did not get a pic of me and the British camera crew. However, I will leave you with some photos from my days across the pond.

Image
Hogwarts, here I come!
Image
Stonehenge = epic
Image
I’m obsessed with Queen. We Will Rock You was pretty much the highlight of my life. Except for my wedding. Maybe.