• goldhands

    Uncovering My Scars

    When I was 15 years old, I was diagnosed with osteosarcoma; a rare form of bone cancer.

    I underwent months of chemotherapy and an intensive limb salvage surgery that left me with a total knee replacement and metal rods the entire length of my right leg. Due to some complications, I underwent a second surgery, where I underwent a skin graph and muscle graph, to close up the wounds from surgery.

    This, of course, caused some pretty crazy scars. Scars that I’ve struggled with for the 12 years I’ve had them.

    I wish I could tell you I embraced them like I embraced my cancer diagnosis, with laughter and optimism, but I did not. I hid them for years. I hid them for five years to be exact. I was the crazy looking person on a 95-degree day wearing long pants. If I did get brave enough to wear shorts, I covered my leg in bulky braces that served no purpose other than to cover me up. I had seen the stares I got the few times I ventured out with just shorts on, and I hated every minute of it. I watched people crane their necks to get a better look and I focused intently at people in large crowds, scanning for eyes on my leg. I could always find them and I always felt them.

    It took me five long years to realize that people are going to stare and that I shouldn’t let it affect me any longer. Having 13thirty as such a significant part of my life helped me overcome these struggles tremendously. The more people I met at 13thirty, the better I felt. I watched in awe as they were rocking their bald heads and scars (seemingly) without a care in the world. Slowly but surely, I was building my own self-confidence. I stared at them, not to be rude, but because I was overwhelmed with how they carried themselves and how powerful they must feel to embrace all parts of their cancer journeys, even if it meant they looked a little different at times.

    The more I was around these types of people, the more I began to throw my insecurities out the window. If they could be proud of their scars, then there was no reason I couldn’t be too.

    Fast-forward to today, and I’m a completely different person when it comes to my scars and insecurities. I don’t care if people stare anymore. In fact, I want people to start staring, to start asking questions. I’m proud of that part of my life and truly believe the experiences I’ve been through have shaped who I am today. I enjoy telling my cancer story and I hope that by doing so, I can help others through their struggles, whether it be physical, mental or emotional.

    If I had any advice to give someone struggling with the after-effects of cancer, it would be to not wait as long as I did. Rock your bald heads. Rock those crazy scars. You’ve been through more than most people can ever imagine, and you should never feel bad about that.


     

    About the Author 

    brittanyBrittany McNair is one of our 13thirty participants! She is an 11 year cancer survivor, married with a puppy, and a baby on the way!

  • warren-wong-277326

    Your Story Matters

    “Owning your story is the bravest thing you will ever do.” – Brene Brown

    It doesn’t always seem like a good thing.

    A diagnosis changes your life and turns everything upside down. Suddenly, people are looking to see how you’ll pull through it, cheering you on and telling you what an inspiration you are.

    You don’t always feel like an inspiration.

    Some days, you just want to crawl under the covers and disappear from the world.

    Social media in our day and age has made it harder and harder to do that. With smartphones and a constant lifeline to the outside world, we’re in the spotlight even more than we’d sometimes like to be. Everyone wants an update — or we feel the pressure to keep everyone informed about our lives 24/7.

    But there is a positive aspect to sharing your story. And more than just sharing, but really owning your journey and being okay with it.

    It takes time. Some of us are ready to share details and process as the story unfolds. Others need to walk through it first, and process later. We are all different, every journey is different, and your story will impact someone else in a powerful way if you are willing to share it.

    Because somewhere out there, someone just like you is struggling with the exact same thing, hoping for a sense of connection.

    It may be easier to push away the feelings and just “get on with life”, but when you shift your perspective to the mindset that your journey is for a greater purpose, you are taking a big, brave step. Owning your story will empower others to do the same. It’s a ripple effect that you may never fully see in this lifetime, but it’s true nonetheless: your pain will have a purpose.

    Choosing to see the greater good isn’t easy. Choosing to own your story isn’t easy. Choosing to share your journey for the benefit of others who are struggling isn’t easy.

    But it will be worth it. You will grieve, you will release, and you will heal.

    And it’s scientific, too! According to Lissa Rankin, M.D., “Telling your story—while being witnessed with loving attention by others who care—may be the most powerful medicine on earth. Each us is a constantly unfolding narrative, a hero in a novel no one else can write. And yet so many of us leave our stories untold, our songs unsung—and when this happens, we wind up feeling lonely, listless, out of touch with our life’s purpose, plagued with a chronic sense that something is out of alignment. We may even wind up feeling unworthy, unloved, or sick.”

    Healing is only possible when you can let go and trust. Rankin continues, “Every time you tell your story and someone else who cares bears witness to it, you turn off the body’s stress responses, flipping off toxic stress hormones like cortisol and epinephrine and flipping on relaxation responses that release healing hormones like oxytocindopamine, nitric oxide, and endorphins. Not only does this turn on the body’s innate self-repair mechanisms and function as preventative medicine—or treatment if you’re sick. It also relaxes your nervous system and helps heal your mind of depression, anxiety, fearanger, and feelings of disconnection.” (Psychology Today)

    So don’t be afraid of your story. It may hurt, it may feel uncomfortable to share at first. But the more you allow yourself to embrace your journey and truly believe in the greater purpose you play in the lives of others through your willingness to just be YOU, amazing things will start to happen — not just in your own life, but unlocking courage and inspiration in the lives of others who need to hear exactly what only you can say.


    About the Author

    Sabrina Gauer is our Communications Coordinator and Wellness Coach here at 13thirty Cancer Connect! Follow her blog and Instagram for more tips and encouragement for whole health and wellness living! 

  • dawn-sunset-person-woman

    Cancer Taught Me How To Deal With Heartbreak

    It’s a phrase you’ve probably heard once or twice…“Thank God _____ happened!”

    Personally, this has haunted me for years; thirteen to be exact. Thirteen years ago, I went out for ice cream and came back with cancer. Sounds crazy, right? Well I may have left out a few details…

    To make a long story short, I was in a car accident. It was a summer night, and I was on my way home from getting ice cream. While being examined after the accident, a large mass was discovered in my chest. Two weeks later, after many tests, I found out I had cancer.

    From then on when I tell my story, the only response I ever hear is, “Thank God you were in that accident!”

    It’s a nice thought, really. I get how people are trying to find the positive in a devastating situation. But honestly, at 19 years old…it was the last thing I wanted to hear. And thirteen years later, I’m still getting the “Thank God ____ happened!” response, and I think my eye twitches a little bit every time I hear it.

    Now don’t get me wrong, I am thankful I was in that accident because who knows if we would have found the cancer before it was too late! But still…something about the “what ifs” starts to get the better of me. And in the past year for me, life went from being the most exciting time to probably the one thing more devastating than cancer: heartbreak.

    I would imagine as a parent, watching your child go to battle with cancer is heartbreaking. My poor mom; not only did she have a sick kid, she had a sick “young adult” who wasn’t very pleasant to begin with. She was definitely heartbroken, but she’s tough as nails and never let me see it.

    So, when heartbreak happened to me earlier this year, it was the first time in my life that I knew what pain really was. Cancer wasn’t painful, it was inconvenient. But this current situation was true, raw pain.

    I found myself reflecting back on the “cake walk” that cancer was. I found myself back in the same “Thank God ____ happened!” mindset before I made the potentially biggest mistake of my life. This time, when it was something I really cared about, I finally understood.

    We learn our life lessons in many ways. People say that “everything happens for a reason” or that it “builds character”. Throughout my life experiences, I definitely learned some things; some were easy, some were hard. In the end, it’s doesn’t matter what life throws at you: cancer, heartbreak, loss… what matters is what you do with those experiences. They are what make you who you are.

    As much as I hate to admit “everything happens for a reason”, it does. There is a master plan that we don’t necessarily create, but we navigate between the good and the bad. We use life’s teachable moments to feed who we are and how we live our lives. Many of my survivor friends have expressed feelings of “little things don’t matter anymore” or how big things become little things when real big things happen.

    As much as I’d like to forget or pretend like I never had cancer, I did. And it was a big deal, until the next big deal came along. I think about what that experience taught me, and how it made me the person I am today. I’m strong, smart, determined, compassionate, and optimistic. I’m able to find the positive in all things because I’ve seen that it’s not a “big deal”. Learning to have a thick skin through cancer helped me understand that heartbreak really isn’t so bad.

    It could be worse and in the end: I’m a Survivor.

    So the next time someone says, “Thank God ____ happened!”, I’ll suppress my twitchy eye and say, “Yes, I’m thankful every day.”

     


    About the Author

    UntitledKaren L. Rector is one of our 13thirty participants! She graduated from St. John Fisher College in 2007 with a B.S. in Management – Marketing. She currently works at Windstream Communications in the HR – Training & Development Department as an Instructional Designer. She enjoys spending time with family and friends, going to local festivals and hosting parties.

  • Dear Well-Meaning Friend

    When tragedy strikes, people get weird.

    “Everything happens for a reason.”

    “You’re strong! You’ve got this! You’re the bravest person I know!”

    “Maybe it’s going to teach you a lesson?”

    “I’m going to check in on you all the time, and I won’t take no for an answer!”

    “I’ve been doing research for you and you really should be doing (insert latest conventional or holistic treatment here) because I heard that it actually works…”

    We all have those friends who mean well, who care so deeply, and just want to help. But honestly?

    Sometimes the best thing to say is nothing at all.

    What most of us really need from our friends and family is support. The shoulder to cry on if needed, the hand to hold when the needles are sharp and we are on our last nerve with the nurse who can’t figure out where our veins are, the hilarious memes shared via texts at just the right moment when we need a good laugh — even if it hurts to laugh.

    But not everyone understands that.

    It’s hard to watch a friend or family member go through hard times. We all have this thing inside of us that feels helpless when we aren’t doing something for our loved one. But we also need to remember that not everyone wants to be smothered with attention or well-meaning advice. We need to remember that boundaries are important, especially when someone is navigating through the confusion of illness and healing.

    And as a patient, we might not handle every situation with grace. We might be in a really bad mood and we might lose it over the smallest thing. It’s not an excuse, but it’s still a reality. Medications, exhaustion, stressful schedules, working through “normal” life and the cancer world…it all adds up sometimes and we either snap or shut down for a while.

    So please understand: you are needed. But sometimes you need to be gentle with us. Life is totally different now, and our relationship with you will change along with it. That’s not a bad thing; it’s just different.

    And if you are that friend who has embraced this new normal and walked through the highs and lows with us, never expecting anything from us, and just being there every step of the journey with respect, understanding and love…well, you are a very special and appreciated individual who’s friendship is worth far more than words could ever express. Thank you for everything.

     


    13thirty Cancer Connect is a place where teens and young adults impacted by cancer are living their best lives — TODAY! We get it here. We’ve been through it or are still walking through it. And we are supporting each other in an environment of acceptance, respect, kindness and love. Visit our Rochester page for programs and events, or stop in to the Center to meet the staff and get connected! 

     

    About the Author

    Sabrina Gauer is our Communications Coordinator and Wellness Coach here at 13thirty Cancer Connect! Follow her blog and Instagram for more tips and encouragement for whole health and wellness living! 

  • paddlegroup

    Why Support Groups Are Important to Your Health

    Support groups.

    As an AYA cancer patient, those words made me cringe with anxiety.

    My first experience with an AYA cancer support group left me feeling depressed and disconnected. I had sat in a sterile, uncomfortable hospital meeting room with a handful of others who were in various stages of their cancers. As we shared our thoughts and feelings in a painfully awkward circle, it became crystal clear:

    This wasn’t working for me.

    The following months were spent trying to figure out my “new normal” while attempting to get back to “regular” life as I knew it — and it wasn’t easy. I ended up quitting my job, discovering a new passion, and finding myself on an entirely different path than I ever expected.

    But no one really understood me.

    Our teens & young adults at Canadice Lake for our 2016 outdoor program with Pack Paddle Ski!

    One day, I received a phone call from the social worker in my oncologist’s department with the name of another AYA cancer patient who had a very similar surgery to my own. I immediately reached out to her, and we got together over coffee. For the first time since my diagnosis, I felt like I had someone who “got” me! It was an incredible feeling! She understood what I had gone through, could relate to the emotions and uncertainties, and could laugh with me about the changes and challenges of our particular cancer.

    It was the most freeing experience I had had since the diagnosis.

    A few days later, she reached out to me about a group called 13thirty Cancer Connect and the Fit! program. “You need to meet Lauren,” my friend texted. “You’ll love her!” I hesitated, given my previous experience with cancer groups, but I was also curious about 13thirty. So I made an appointment to meet with Lauren Spiker and signed up for the 13thirty Fit! program. The rest, as they say, is history!

    Connecting with others who “get it” is so important to our overall wellbeing.

    According to an article by the Mayo Clinic, support groups are places where we can heal and trust the process of  our journeys in a safe space. The article lists out the following benefits of a support group:

    • Feeling less lonely, isolated or judged
    • Gaining a sense of empowerment and control
    • Improving your coping skills and sense of adjustment
    • Talking openly and honestly about your feelings
    • Reducing distress, depression, anxiety or fatigue
    • Developing a clearer understanding of what to expect with your situation
    • Getting practical advice or information about treatment options
    • Comparing notes about resources, such as doctors and alternative options

    At 13thirty Cancer Connect, we’ve been through it all: diagnoses, doctors, hospitals, medications, side-effects, scars, disabilities, challenges, and triumphs. Our lives have been changed in such a drastic way, but to be accepted and understood in a space where we can thrive together is key on our survivorship journeys. We encourage one another, cheer each other on, believe in each other. Whether it’s through teen & young adult events, parents & caregivers support, hanging out at the Center, being out in the community, or catching up outside of 13thirty, you will find its so much more than a “support group”; there’s a sense of belonging to a family here!

    Visit www.roc.13thirty.org for our upcoming events, or stop by the Center to say hello!

     

    About the Author

    Sabrina Gauer is our Communications Coordinator and Wellness Coach here at 13thirty Cancer Connect! Follow her blog and Instagram for more tips and encouragement for whole health and wellness living!