Being Alive is the Meaning

"And if I had the choice of going back in time, somehow, and preventing the cancer, I wouldn't since it would change so many things."
-Esther Earl, "This Star Won't Go Out"

This past Monday, I made it home for a day of check ups and scans at the Cleveland Clinic. Monday I had an amazing day, just my Dad and I. The day of check ups began bright and early at 7:30 am at the Clinic. My day started with an Echocardiogram, which I receive every 6 months, to monitor my heart health as Doxorubicin, one of my chemos, can cause long term heart damage. The Echo was followed by and EKG, and then wandering all over the Clinic visiting doctors and nurses, my family. Definitely turns into a social hour when I'm there, but I wouldn't want it any other way. After visiting M50, Daddy-o and I headed to my CT Scan of my lungs. This scan is the "most important" because it shows any signs of Osteosarcoma relapse. The first place it would spread would be my lungs, so these are the "scans" I refer to, to make sure I am still cancer free! Next was audiology to check my hearing as Methotrexate, another chemo, can cause long term hearing loss, so we keep a close eye on that as well.

After this, Dad and I left campus for a little and headed to Winking Lizard for a bite to eat. On a sappy note, do you ever sit back and appreciate your parents or family? Sometimes I get so overwhelmed thinking about how fortunate I am to have the family that I have...this was one of these moments. I enjoyed every second I had with my dad, never wanting to leave his side.

After lunch, we headed back to campus for my visit in S20 where social hour ensued. I was so lucky I got so see a friend, Justin, who also beat cancer and was there for his check ups (GO Justin!) and we got to catch up briefly! But, when I was there, I was moved to tears sitting in the waiting room. All the anxiety of the scans and the memories of so much time spent in this wonderful place came over me and I quietly cried as I watched an exhausted mother push her daughter in a wheelchair back and forth in the waiting room. The girl looked exhausted and like she was losing all hope as she held her head in her hands just waiting for the same routine; check in, get chemo, feel sick...over and over and over. It broke my heart and the survivor guilt set in like it had never before. There I was, a healthy, relatively happy 20 year old so excited to see everyone, the opposite of the poor girl in the wheelchair. I told my dad right then that there is no one I have more respect for than the incredible patients and their strong families in this place. No one.

When I was able to get a room in the doctors office, I got to see so many friendly faces. It feels like home when I am there. All my doctors, fellows, nurses, everyone is so happy to see me, and I am happy to see them, two-fold. I miss the routine of being there, I miss the care, the love, and the family ties that I have with so many people there. The cravings I have to be back there are so complicated I cannot explain them. After visiting with wonderful friends, my doctor came in who was also excited to see me. After a quick catch up, we got down to business and she told me everything looked great. We looked over all my test results showing my heart is very healthy, EKG was great, audiology is changing slightly but still in normal ranges, and the CT scan showed I still have two little nodules that I've had since diagnosis and have not changed, meaning no metastatic cancer in my lungs! (maybe just scars from a previous infection). So here I am, 15 months cancer free. And with what I am about to tell you, I hope I do not offend anyone.

I was disappointed when I saw my scans were clear.

When my doctor finished showing me, she asked me "how are you really doing?" and I lost it, right then and there, sitting on that check up table in S20 with Finding Nemo stickers and blinds surrounding me. I told her about my anxiety about scans, the sad scene I saw in the waiting room, and how I actually long to be back in S20 and M50, with the people I call family, in such a safe and comforting place. I cried to her about the survivor guilt I feel and how different my life is and how I'm still trying to figure it all out...why I am still here. I cried to her about everything, how selfish I feel for even having these feelings and wanting to be sick again. Much to my surprise, she told me everything I am feeling is so normal.

She explained that everyone reacts differently to the struggle patients are faced with. Some stay closed off, some just do what they need to do to get by, and some, like me, soak up every minute and make the most of their time, making memories along the way. Everyone's reactions are different and completely totally their own and exactly how they need to react to make it through each day. There is no right or wrong. With my heart, it was hard to leave a place I call home. Ever since I was pronounced cancer free and sent back to the real world, life hasn't been the same. It was foolish of me to think it could be, but hey, we're all human. I long for everything that the Clinic offered me and the feelings of comfort and routine I had while I was sick. It was my own little garden of Eden in a mess of a world and a time of struggle. Maybe it is just my coping mechanism, forgetting all the bad times, but I know that the Cleveland Clinic and my symphony of care will always hold a special place in my heart.

I am still working through these feelings and learning how to process them all. The recovery from cancer is a lot longer than I was expecting, but day by day, I am figuring myself out more. So, as Esther pointed out, I wouldn't change my experience for a second. We are who we are based on the experiences we share. I am who I am because of my journey through cancer. I still dream of a day when the world cancer is found in history books...Here are some cool things I want to share:

Kuts For Confidence video: http://www.youtube.com/watch?v=yxrPOhXJsnY

Relay For Life video: https://vimeo.com/88189744

Please check them out if you have a second, really amazing work. I am so fortunate to be a part of these organizations. Thank you for all your continued love and support. I feel it all the way in St. Louis! I hope you all have a wonderful day, week, year...I would like to leave you with this quote by Joseph Campbell:
"Life is without meaning. You bring the meaning to it. The meaning of life is whatever you ascribe it to be. Being alive is the meaning."

Infinite X's and O's

Em

 

D-Day 2014

On February 15th, 2012, I made this first post:
"On Friday, February 10th, I was diagnosed with Osteosarcoma, or bone cancer. This was unexpected and frightening, but my parents and I were ready to take this on. Saturday afternoon I was discharged from the hospital and went back to campus to pack up some things and say goodbye to my amazing friends. This was extremely difficult, but I know I will be back! Sunday morning, my parents and I were on the first flight back home to Cleveland to begin my treatment at the Cleveland Clinic. This is a challenge that I have been faced with and it will certainly be a long 7-9 months to fight this cancer, but I am ready. With all the amazing support of family and friends, I am going to continue to stay positive and motivated to fight. God never gives us more than we can handle, and I know I'll beat this. Sometimes we just have to Let go and Let God, and of course, you always gotta keep your head up :) "

Since then, so much has changed. Today I woke up 2 years removed from the nightmare that was "D-Day" or Diagnosis day. The last few days my emotions have been running wild remembering all too vividly the thoughts, feelings, and the difficult conversations I had to have following the startling news of "I'm so sorry, but we found cancer cells in your biopsy. You have something called Osteosarcoma, or bone cancer." Thinking about everything really just makes me feel like... "wow." Not even sure what words would follow other than it seems like a different lifetime and I can't believe that really happened. 

I was reminded of the difficult conversations I had with one of my best friends, Alex, yesterday. We were recalling the moment when I got back to campus and asked her to come to my room. I was sitting with Greg and I was already crying as she sat down with nothing but the happiest, cheeriest smile on her face. I told her the news and she was still smiling. Her response to me was, "I'm so sorry if I am coming off insensitive but I am just so confident because I know you're going to beat this." Alex, Ali, Emma, Greg, Johnny, Wolf, Lauren, Kaitlin, Cecily, Ryan, Charlie, Kevin, Greg, the Saintsations, all of you that sat in my jam packed room that day as I packed up my things, thank you for instilling in me hope and strength to begin this journey - and now to finish it!!

2 years later, the feeling of pain in my leg is gone. The scares of fever neutropenia, infections, bumps in the road are all just memories. The feeling of sadness, uncertainty and sickness from chemo are also just thoughts remembered from time to time. What seemed like such vivid moments seem to be fogged in my memory now...maybe that's a defensive mechanism, only remembering the good. My battle scars are proud trophies of my defeat on the little c. I am remembering all these things with a smile on my face. Some tears, yes, but I am smiling because I can't even process how blessed I am for the amazing support I felt for the 9 months and continue to feel from so many people all over. I feel like I am truly the luckiest girl in the world. Cancer put my life on pause, but 2 years from that awful day, I am back at school, cancer free and loving my life and all the people in it. Thank you for your continued thoughts, prayers, love and support. It means more than you know. I will be heading home for a day of scans on March 3rd to make sure I am still 100% healthy...no little c cells anywhere. Scans no longer scare me like they used to...like that first day, February 10th, 2012 watching the bone scan tick 1% at a time over my whole body....

Momma Jane was texting me yesterday and said "Goodnight. Think about how much you have grown. Eyes forward." -she couldn't be more right. The future is too bright. Today marks the worst day of my life but 2 years later still being able to sit at my kitchen table and write my story... I am the happiest girl in the world. 
God bless all of you, thanks for helping me keep my head up. 
XO Emily

#WorldCancerDay

I guess you can say today has been a bit of a reflecting day for me. In case you didn't know, today is "World Cancer Day"... can't say I know who founded this so-called day. According to worldcancerday.org February 4th is: 
"World Cancer Day is a chance to raise our collective voices in the name of improving general knowledge around cancer and dismissing misconceptions about the disease."

Today I got up, made a nice little breakfast, and sat down at the computer searching through old pictures of my little c adventure and all the amazing people that helped me through that time. I changed my profile picture on Facebook to a shade of purple because Chevrolet teamed up with the American Cancer Society and donated $1 to cancer research for every purple default picture, pretty amazing! My roommates probably weren't expecting to see tears start streaming down my face in the middle of breakfast but I couldn't control it. Emotions over came me and memories, good and bad, came flooding in. I hopped in the shower before class and let my tears fall in the hot water with feelings of loss and despair overtaking me. I miss Cora, I think about all the people who've lost loved ones to cancer, all people holding on to some kind of hurt from an unfair disease.

I'm not sure why it took a day to be named "World Cancer Day" for me to have a release of emotion, I guess it just came out. I also don't understand why it takes a designated "cancer day" to remember that this fight always continues. Unfortunately, we can't turn on the fight and turn it off when we don't want to think about it...cancer is around us, everyday. People are fighting, every single day. They aren'y giving up, so why should we? I believe it is part of the reason that I am still here, to help others finish their fight. If I can be some kind of encouragement, raise money for research through Relay For Life, or put a smile on one person's face, then I will go to the ends of the Earth to make that happen. 

The nostalgia of today is humbling and also a reminder that everyone is fighting some kind of battle, cancer or not, we are all fighters. Don't ever, ever give up hope. Don't ever stop fighting.
Please say a prayer and remember all people in the fight of their lives today. Prayers are twofold to you are your families. Sending all the love in my heart, hoping that one day this day won't exist...
Emily