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 

Wednesday, March 25, 2015

WHY DO YOU RELAY?

I don’t even know where to begin. The dreaded question, “Why do you Relay?” is more loaded than most people realize. I can neither bear simplifying my answer to just one family member, nor quantify the pain and fear cancer causes. I will try my best at listing a handful of reasons why I have spent my past four years at the University participating, fundraising, and publicizing for Relay For Life.

When I was seven, my aunt Sue (my mom’s sister) was diagnosed for the third time with cancer. She beat Hodgkins Lymphoma, Breast Cancer, and was now facing Lung Cancer. Unfortunately, she was in Florida and my parents were waiting for a school holiday or a better prognosis to visit her.  I remember the day I came home from school and my mom was there at an unusual hour. “Your aunt went up to the angels today”, she told us. It took a few minutes for that statement to register with my 7-year-old self, but it was one I would never forget. Some people may think that a child cannot understand pain and death, but I learned and felt its immense sadness at an early age. 

My sister and me at the bench dedicated to my Aunt Sue in Florida 
My mom’s other sister, Aunt Jean, fought Leukemia (which was allegedly caught just a few days before it would have killed her). I can’t say I remember her time at the hospital since I was pretty young, but I know she had one of the toughest battles. I do remember helping her pick out wigs for her newly bald head, helping her cope with the absence of her long auburn-colored hair.

Less than 10 years after my Aunt Susan passed away, it was my mom’s turn to fight this awful terror. Learning from family experience, my mom (Barb) was routine about getting check-ups, including mammograms. In June 2009, the doctors found a small tumor in her breast. She had surgery and radiation that summer. My mother – a single, full-time mother working over 40 hours a week for the government and taking care of two demanding teenage daughters – showed primary concern in others. Upon diagnosis, she immediately emailed her friends and family and urged them to be tested routinely. Early detection saves lives. She is truly my hero.  In comparison to many stories, my mom is lucky and we know it. But I want to see a day when catching cancer early and beating it isn’t lucky, but guaranteed. 

Me and my wonderful mom 
The beginning of this school year, my mother’s cousin, “Aunt Kathy”, lost her battle to esophageal cancer. She had already beaten breast cancer, the case eerily similar to my mom’s. This year, I am relaying in honor of her, my sports-loving, down to earth, never-missed-a-birthday, caring Aunt.

I wish the list could end with my mom’s side of the family, but it does not. My smart, kind Grandma Dottie beat breast cancer gracefully several years ago. On the other dark side of the coin, Grandpa Milt lost a long battle with pancreatic cancer during the fall of my second year at UVA. Seeing the 6’4” patriarch of the Addison clan fall to this disease (which is one of the most deadly) was terrifying.

Me and Grandpa Milt at my high school graduation party 
Saying goodbye to Grandpa Milt, Aunt Kathy, Aunt Sue, and other loved ones does not get easier. I have been beyond grateful for the support of my friends and family while going through these losses at school.

Now it is my turn to fight. I know the odds. My genetic background is not in my favor. I’m told most things I consume are carcinogens. I have had my share of radiation poisoning with dozens of X-Rays. I’ve heard the survival rates. I know the likelihood for reoccurrence. Yes, things are improving with the research of ACS and other organizations. But I can tell you that I am damn scared about my future.  

I relay for my entire family: those who have had cancer and won, those who have tragically lost, and those who face imminent uncertainty. I relay for my friends. I relay for my future. I relay for all of us.

Me in the Relay Morph Suit 
If you would like to help me reach my fundraising goal or join me in this fight on April 10th, click here.

RelayLove, 

Wednesday, March 18, 2015

#KUYKENSTRONG

It started as a simple hashtag. It marked the beginning of a new adventure and foretold the long fight that lay ahead. In the summer of 2013, Shawn Kuykendall, my soccer coach of eight years, was diagnosed with stage IV thymus cancer. Shawn was more than just my coach; he was my mentor, my confidant, my friend, and the older brother I never had. On his first day of chemo, Shawn posted this photo to Instagram announcing his battle with cancer and foreshadowing the strength and tenacity he would maintain throughout his long journey.

A new adventure begins. #KuykenStrong

For Shawn, this wasn’t just another bump in the road, it was a new adventure – and that is exactly how Shawn approached each new struggle that cancer threw his way. As Shawn’s treatment progressed, the Instagrams continued to come and “#kuykenstrong” took on a life of its own. Sadly, after eight long months, Shawn passed away, but he left behind the legacy that is #kuykenstrong. For those who knew Shawn and those who were rooting for him, #kuykenstrong was so much more than just a simple hashtag. At Shawn’s memorial service, his family distributed “KUYKENSTRONG” bracelets to all those who attended as a way to remember Shawn and provide a tangible connection to him every day.


Now it’s been a year since Shawn passed away. It’s been a year since I received my “KUYKENSTRONG” bracelet and not a day has gone by that I have not worn it. My “KUYKENSTRONG” bracelet isn’t just a connection to Shawn, it’s a reminder. It’s a reminder of Shawn’s incredible character and unwavering fight. It’s a reminder of how I should strive to live my life each and every day.
It’s a reminder to never take myself too seriously. Shawn was known for his sense of humor and whether he was telling Laffy Taffy jokes during water breaks or coining new terms like “bazilly”, I can honestly say I never walked away from being with Shawn without having laughed at least once. He knew when and how to laugh at himself, and in watching him laugh at himself (and sometimes me), I learned how to do the same. I learned that the most embarrassing things are often the funniest. So whether I am walking into walls or wiping out in a room full of people, you can find me with a smile on my face and breaking out into laughter. When I start to take everything too seriously, all I have to do is look down at my “KUYKENSTRONG” bracelet and I am immediately reminded that whatever I’m facing isn’t the end of the world.


My “KUYKENSTRONG” bracelet is a reminder of unyielding faith. Throughout his entire battle with cancer, Shawn never gave up hope. He trusted in God and believed that God had a plan. His unwavering faith in the face of such great adversity is a constant inspiration to me and I hope that in the most difficult of times, I, too, can demonstrate this insurmountable faith and trust. When it seems like nothing is going as planned, I simply turn to my bracelet as a reminder that there is a greater plan and that everything happens for a reason.

"Chemo Daggers" #KuykenStrong 

Most importantly, it’s a reminder to never give up. In the near decade I knew Shawn, I never saw him give up. He never gave up on his dreams despite the countless injuries that ended his professional soccer career. He never gave up during his fight with cancer and he fought until the very end. To me, #kuykenstrong will always represent a never-ending fight. Each day that I wear my “KUYKENSTRONG” bracelet, I am reminded to never give up and fight through every challenge thrown my way, no matter how big or small. Shawn showed me the importance of not letting small obstacles in life stop me from succeeding; he taught me that to make it in life, I needed to tough it out at the hardest moments because in the end everything would work out. Whether it’s a run that’s kicking my ass or a day where everything seems to be going wrong, I remind myself of Shawn’s determination and fighting spirit and motivate myself to push through and work that much harder. While my challenges may not be as life or death as Shawn’s cancer was, I keep fighting just like he did.


So what is #kuykenstrong? To me, #kuykenstrong embodies Shawn – his faith, his humor, his Fa'Shawnable attire, his spirit, and so much more. My “KUYKENSTRONG” bracelet reminds me of all the life lessons Shawn taught me; it reminds me that Shawn is always with me; and, it reminds me why I Relay. I Relay because for too many people, cancer finishes the fight. I Relay to remember and celebrate the lives of everyone I have lost to cancer and work to help finish their fights. I Relay because today, and every day, I am #kuykenstrong.



P.S. To learn more about Kuykenstrong, Shawn, and the foundation that is carrying out his final wishes, please look at their website


RelayLove, 
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