Wednesday, April 8, 2015

INEVITABLE CHANGE

cancer: (noun) can·cer \ˈkan(t)-sər\ a serious disease caused by cells that are not normal and that can spread to one or many parts of the body

Cancer is, quite literally, change. Cancerous cells are created from a body’s own cells with two distinct differences. These cells have mutated, or changed, genes. One, the oncogene, pushes the cell to divide much faster than normal. The other, the tumor suppressor gene, has been “turned off”, your body’s natural defense against tumors shut down. The cells may have one or both of these mutations, and they don’t all look the same or stay the same. Cancer cells are your own cells, changed.

But cancer creates change in other ways too. Lives and lifestyles are all changed by cancer – those of the patient, the caregivers, the family. Change is inevitable with this disease, as with most. Schedules must be conformed to treatments, family meals look different because of diet changes, and the dynamics of family interactions can change. Cancer is change, within and outside of the body.

Most of the time, when we think about cancer and change, it immediately brings forth feelings of dread: we see change associated with cancer as bad. Change means more cancer cells, it means more tumors, bad test results. It means its harder to catch, and harder to beat. Change can be unknown and scary. But what if we could create good change?


I often begin my cancer story with the same line: “My life changed forever in a Marriott in Georgetown”. Dramatic, maybe, but 100% true. I was sitting on the edge of the bed in our hotel room, while my parents sat me down to tell me the news that would change me forever as a daughter, a student, a volunteer, a friend, and a person. That was the day I found out, amidst a flurry of texts from friends who were storming the field at Scott Stadium after a down-to-the-wire win against Miami, that my mother had been diagnosed with late-stage Ovarian Cancer. At that point we thought it was Primary Peritoneal Carcinoma – but that changed too.


My mother underwent extensive chemotherapy, more than 5 hours per treatment, every three weeks, for 4 months, surgery to remove her many tumors, and more chemotherapy after that. A one-word text made April 25th, 2013 truly the perfect day. It read simply, “remission.”  That remission was the change we had been hoping for. It was the day it looked like my mother had won. That was also the day I finally caught my breath.

However, in August of 2013, my mother’s CA 125 – or Cancer Antigen 125, the blood marker that indicates when ovarian cancer cells, otherwise almost entirely undetectable until they are an even more dangerous tumor, are present in a woman’s blood, came back elevated. Upon testing, we found out that this was a bad change – a new tumor had begun to grow. My mother’s treatment began again on a new cocktail of drugs and our resolve got stronger.


Every chemo drug will cause an allergic reaction in less 10% of patients, and every patient usually has one drug that they are allergic to. My mother’s reaction, however, fell in the 1%. As I watched this so-called “miracle drug” tear apart my mother’s body, I watched her stubbornness grow stronger. It was working, sure. The tumor was shrinking. And my mother knew that. So she downplayed every single one of her symptoms – telling the oncologist that she wasn’t working hard enough to get rid of her own symptoms, and that she would have them gone before the next treatment. Her stubbornness paid off: she was told she no longer needed the toxic drug in her cocktail and returned to a much more manageable regime.

And for 6 months, that’s where we stayed. But then change took over again.

The night of my first meeting as a Relay Exec Chair, I spent my walk home on the phone with my mother. The undertones in her voice sounded weird, and I knew something was wrong. After remembering that she had had a CT scan the past Thursday, I put 2 and 2 together.

“What did they find, Mom?”

So we started again. They reintroduced Doxil into her cocktail, but my mom was prepared this time. But again, her reaction was in the 1%. So we made yet another change.

I Relay for more cakes that say this.
This journey has been full of changes. Lots of bad changes. Scary changes. Unsure changes. But what does good change look like?

It looks like the incredible people this terrible disease has brought into my life, namely the nurses who give my mom treatment week after week, who helped me finally realized that I was meant to be a Pediatric Oncology nurse. 

It looks like Relay For Life, an organization that has simultaneously consumed and changed my life for the better and given me another family to fight alongside. 

It looks like researching my own risk of finding an elevated CA 125, and though its much higher than the average person, knowing what to look for – knowing what that change looks like.

It looks like pouring sweat, blood, and tears into a cause we all care so deeply about.

It looks like seeing a cure for cancer in our lifetime.


Sitting in that Marriott in Georgetown, I knew my life had just changed forever, but I could never have known how or how much. My mom and I always joke that she’s the optimist and I’m the pessimist, but if there’s one thing that she has taught me through her incredible resolve, bravery, and gracious fight, its that “every cloud has a silver lining”. For all the changes in her life, she has found a silver lining to them all.

So I Relay for good change. For positive change. For the chance to be the generation who sees the end of cancer in our lifetime. I relay for everyone who Relays and helps finish the fight. I relay for caregivers, who make the fight a little bit easier. I relay for survivors, who fight every minute of every day. But most of all, I Relay for my mom, her incredible fight, and her immeasurable strength.

So here’s to you, Mom. I love you.

With RelayLOVE,

Thursday, April 2, 2015

CURE4CAM


Why do you Relay?

            I relay because I want to honor my cousin Cameron and the beautiful, though short, life he lived. He was an incredible young man, who inspired and continues to inspire me every day.  At the age of 13, while battling leukemia, he showed his incredible strength and spirit to everyone around him.  His positive outlook on life in the midst of his battle inspired not only me, but many of those around him. Cameron started his own blog while he was sick, and used his posts to inspire others.  IN one of his posts he wrote, "The best kind of inspiration is the kind that makes you want to save a life."  This is the statement that Cure4Cam works for.  I relay because I'm inspired by Cameron...I relay because I want to help find a cure...I relay because I want to save a life.  We continue to fight the battle against childhood cancer.  Although Cameron is not here, he lives on in all of us and inspires us to continue to work for a cure. He never stopped, and neither will we.


Who was Cameron?

            My cousin Cameron was a very active athlete, runner and swimmer who balanced this active side with strong academics and a love of technology.   He was an extremely creative, inventive, humorous person.  Above all else however, Cameron had an unwavering positive attitude that was infectious to anyone who met him.  At no time in his life did these qualities become even more noticeable then throughout his battle with cancer.  On 11-11-11, at the age 13, Cameron was diagnosed with leukemia.  Despite the devastation of his diagnosis, he never once gave up hope, and he continued to live his life as the amazing talented upbeat young man he always was through the difficult treatments he faced. It would have been easy for someone in his situation to just let the experience tear them apart and change them, but Cameron seemed to become more determined then ever to not only beat his cancer, but to teach others about the experience and inspire others to make a difference in the treatment of pediatric cancer.  Cameron created a blog of his own to share his story and inspires others (www.camcreator.com). It showed how wise he was beyond his years and inspired anyone young and old to make the most of their lives and look at every new opportunity as a challenge.  Sadly, after a difficult 7-month battle, in May of 2012 just after his 14th birthday, Cameron passed away.  While he is gone, his spirit truly lives on in so many. 


How I developed Cure4Cam and the “HOOS Swam 4 Cam" Campaign:

            Cameron was an avid athlete his entire life. He played all kinds of sports when he was young, but he was an exceptional cross country runner and swimmer. As The Cure4Cam Childhood Cancer Foundation got its start we really focused on building off Cameron’s talents and the communities surrounding them to gain support and build awareness. At home, in Downingtown, Pennsylvania, we started with several 5k runs and relay events. We then reached out to the very strong swimming communities surrounding Cameron and his family.  Since its development in late 2012, Cure4Cam has continued to grow throughout many states, and has raised much needed awareness and funding for research.  
To date, the organization has raised and donated over $360,000. When I started attending school here at UVA, I knew I wanted to bring Cure4Cam to our campus. I knew the best way to start that was through my network as a student-athlete.  The men’s and women’s swim teams are never really in off season, so running an actual event was not really an option especially early in the year and through the winter.  Instead, I designed a virtual event for our team. 
I had our team commit to a one-month initiative to raise awareness about childhood cancer, and to raise much needed money for childhood cancer research.  I called it “HOOS Swam 4 Cam”, and introduced my teammates to my cousin Cameron and his story.  This served to increase their support of the effort even more.  In order to connect our UVA swim team with Cameron and Cure4Cam, we pledged to swim 238 miles collectively a week, the distance from Cameron’s house (and the home of Cure4Cam) in Downingtown, PA to the AFC in Charlottesville, Virginia.  We successfully swam our committed total throughout the month of February, and proudly wore our “HOOS Swam 4 Cam” caps and t-shirts.  Through the efforts of my teammates, we raised $2600 for The Cure4Cam Childhood Cancer Foundation. 

 

How I made “HOOS Swam 4 Cam” a reality:

            The way “HOOS Swam 4 Cam” became a reality was two-fold.  First, I used the large supportive network I had in my teammates on the UVA swim teams.  I am blessed enough to have an amazing support system here.  I knew if I could connect them to Cameron’s story and introduce them to the amazing things he did and wrote about, they would be 100% supportive of the effort.   Once they read his story and his blogs they were inspired to help, and were all willing to do what they could to make “HOOS Swam 4 Cam” a reality.  Their connection to Cameron ensured an amazing effort from all of them.  Secondly, I knew I had to get the word out about the event and to not be shy about asking for peoples’ talents to help or for their donations to support us. Cure4Cam along with the talents of some of my teammates, constructed a flyer about our efforts, and through the team, we got the word out to seek support and donations.  
I had to learn not be shy in asking people for help and reminding my teammates to send it to family and friends.  I would advise anyone in a similar position to connect people to your story and personalize it, and to use the talents and resources of the people around you to help increase your success.  The more people are connected, the more support you will conjure up.


How to inspire others to take similar action 

            One of the most important ways to inspire others is to help them see they are capable of making a difference.  Cameron wrote about how important it was to use our own talents to make a difference.  Once people see their talents are needed and supportive they are more likely to take action.  Additionally, it is important to always show people how their efforts make/made a difference.  A lot of large prominent foundations do amazing things, but people are sometimes unsure of where their money goes and do not see an immediate impact from their efforts. It is always important to show and explain where money is going and what a big difference it is making.   Doing so helps to inspire others to not only get involved, but stay involved as well.

            Finally, I found it helpful to ensure others feel connected to the initiative or foundation. It was so important to introduce my UVA teammates to the Cure4Cam website and Cameron’s blog before we really got started with our projects. Helping people feel like Cameron was someone just like them made people want to give more of their time to Cure4Cam and give more of an effort. That connection to a cause is imperative to success.

Relay For Life would like to give a HUGE thanks to Shannon Rauth, a varsity Virginia swimmer, for sharing her amazing story and details about her successful campaign for Cure4Cam. 

RelayLove, 
Publicity Committee 

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