• 13thirty Threads

    The Diagnosis – Vicki Ties It Together


    13thirty member, Serena (Ewing’s sarcoma) reflects on the moment she found out her diagnosis.


    You have cancer…and, just like that, you are instantly part of a “club” that you would have never signed up for if given the choice. Your life is changed in an instant. 

    I remember the day like it was yesterday. It felt as though I was under water. The surrealness of the moment, washing over me like a thousand waves. How can this be? Why me? 

    Reflecting on the months and years that followed, I realize that there were many instances where I could/would not process my feelings. All of the fear, guilt, and anxiety seemed to have become a part of me. That said, it soon became abundantly clear that though the negative feelings and emotions were valid, they did not define me.

    Am I going to die?
    How is this going to affect my family, my spouse, and my friends?
    Will the next scan show no evidence of disease or progression?

    Sometimes the feelings came slowly, other times they came in rapid succession. There were moments when I felt strong and confident, looking forward to the future. Then, there were the moments that took my breath away. I think we can all agree that sometimes, you just need to cry. You need to sit in that uncomfortable space and simply be. My advice for you is to allow yourself some grace. No self-judgment, only love. 

    As isolating as a cancer diagnosis can make you feel, you need to know that you are not alone. Consider yourself as a captain. Your family, friends, co-workers, physicians, nurses, and the people you meet along the way, are your team. They are there to cheer you on, to help you rally through, and to support you even in the darkest of days. Stay strong and stay optimistic. You, my friend, are a cancer THRIVER!!

    Peace, love, and light. 
    Vicki

  • 13thirty Threads

    Hi everyone, I’m Vicki, a 2x Stage IV Hodgkin’s Lymphoma thriver, and this is my story.

    It all started on Friday, October 31, 2014. The day I heard the words, “You have cancer.” Having always led an active life style – mountain biking, skiing, hiking, anything outside, any physical challenge – a persistent five-month cough, and a deep aching pain in my chest each time I took a breath was concerning, but cancer was not even remotely on my radar, let alone Stage IV metastatic disease.

    Like many of you, I’m sure, a chest X-ray was followed by a CT scan, and then, THAT phone call (you know the one). As I slid down the wall of my office, phone still in hand, I remember vowing – I am invested. This is my life, and if I need to walk through fire, I will. And I will rise through the ashes and fly because that’s what I was born to do. Just like all of you!

    My cancer adventure (adventure? Sure, why not!) was like many of yours – multiple surgeries, scans, lab work, six months of chemotherapy, 18 rounds of radiation, and finally the sweetest four words a Thriver can hear…..no evidence of disease (NED)!

    Eight months later, the beast was back. Stage IV, yet again.

    This time, I asked the universe for clarity and peace. I allowed myself to cry, to feel everything I was feeling, to sit in that moment and allow myself to just be. When there were no tears left, the picture became clearer and the peace I had been seeking found me. In June 2016, I enrolled in a clinical trial at Memorial Sloan Kettering, in New York City, that combined immunotherapy and antibody therapy (pretty mind-blowing stuff huh?). The goal of this conditioning treatment was to (fingers crossed) once again achieve NED and prepare me for a stem cell transplant. The treatment worked! Collection of my own stem cells and a preparative regimen of high-dose chemotherapy followed, leading to an autologous stem cell transplant in November 2016. My own cells gave me a second chance at life.

    Today, nearly six years after my initial diagnosis, I can proudly say (who am I kidding, I am shouting out loud), I’ve gone from Stage IV to No More! It has not been easy. There have been dark days and I often struggle to convey all the daily thoughts, feelings, and emotions. But cancer changes your perspective. It humbles you. It makes you appreciate every smile and awkward moment. Every sunrise and warm summer breeze. All of the laughter, along with the tears. Cancer has also inspired me to give something back to the world that I almost lost.

    Through this new series, 13thirty Threads, I will be honored to add my thoughts to yours as we stitch our shared experiences together. All the people, places, and emotions that have colored the fabric of our individual lives will be woven into the collective tapestry of 13thirty Cancer Connect. I can’t wait to get started!

    Peace, love, and light.

    Vicki

  • We’re expanding to Syracuse!

    Syracuse

    Why Syracuse?

    13thirty Cancer Connect’s community-based center in Rochester, NY has been a second home to hundreds of teens and young adults with cancer for nearly twenty years. A place so vital for current patients and survivors alike, that a Syracuse teen, Charlie Poole, traveled 95 miles with his mom to meet new friends who understood. Charlie’s love for 13thirty Cancer Connect became the driving force behind our planned expansion to Syracuse. He looked for resources and support for other teens and young adults with cancer in his community but found none. So Charlie and his mom drove all the way to Rochester to attend programs. We knew it shouldn’t be so hard and we had to make it easier for others like Charlie.

    Sadly, Charlie died in August 2018 leaving an indelible mark on our hearts and a sense of urgency to act on our dreams. Five years ago, another beloved 13thirty friend died. Hannah Metzler, like Charlie, was only 17. After Hannah’s death, 13thirty earmarked the generous gifts given in her honor for our first expansion site. The donations in Charlie’s honor were earmarked for the same ambitious goal.

    Why Now?

    82,000 teens and young adults ages 13-30 are diagnosed with cancer in the United States each year. Like Charlie and Hannah, they need 13thirty Cancer Connect in their community. Support from our 13thirty Champions helped us to confidently begin serving Syracuse teens and young adults at our new 13thirty Cancer Connect center dedicated to Hannah and Charlie.

    Why Not?

    Please join us at our Grand Opening as we continue to “make a difference, make things better.”

    13thirty Syracuse Grand Opening Media Advisory

    Keep up with the now open Syracuse center by reading the Syracuse Scoop or checking out our ongoing programs. Or stop by and pay us a visit! Get directions here.

  • The Power of Community

    13thirty, A Community for Parents of Teens & Young Adults Living with Cancer

    Most definitions of parenthood are variations on a theme – “The state of being a parent.”

    This is a useful construct if you understand what it means to be a parent but for many of us, parenthood is an ever evolving, often terrifying, but always rewarding job. Most of us learn what it means to be a parent through trial and error until we settle into the role. After a while, we get the hang of it.

    But if you’re a parent of a child with cancer, this quote probably resonates: If parenthood came with a GPS, it would mostly just say: RECALCULATING.

    When your child is diagnosed with cancer, all bets are off. Each day brings new challenges and even greater unknowns. Everything you ever thought you knew becomes unclear and decisions once made without thought are now scrutinized and agonized over. Routine flies out the window, hospital procedures dictate schedules and sleep is brief and interrupted. Healthy eating? Forget about it. Many of us rely on caffeine, fast food, and the undying love for our children to keep going each day.

    When added together – sleep deprivation and coffee overload, junk food and escalating stress – the toll on cancer parents is high.

    As parents, we know taking care of those we love takes priority over self-care.

    That’s where 13thirty Cancer Connect comes in. Thanks to a grant from the Greater Rochester Health Foundation and Excellus Blue Cross Blue Shield, our parents are making the time to take care of themselves. 13thirty Fit – Parents is a 12-month program offering physical fitness classes, gentle yoga, and free massage to help alleviate the burden of caregiving.

    Just like our programs for teens and young adults, our parents’ programs are designed to help weary parents build a new peer community with others who understand. At 13thirty, everyone ‘gets it’, so words are often unnecessary. Support is free for the asking and the coffee pot is always on!

    If you are a parent, come and visit our Center. We’ll give you the nickel tour and listen for as long as you need. Contact Steve at (585) 563-6221 to register for fitness or yoga and to make a massage appointment. Not only will you feel better, you’ll make new friends with like-minded folks.

    You deserve that and more, don’t you think?


    About the Author

    parentsLauren Spiker is our founder, executive director, and chief visionary with a pulse on what’s happening in the world of AYA oncology. Her dreams are big and bold!

  • support

    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 Instagram for more tips and encouragement for whole health and wellness living! 

  • podcast

    How It All Began

    Whether you are new to 13thirty Cancer Connect, or have been part of the community for a while now, get a new perspective and learn about its start and what we do for the community as a whole.

    In this podcast segment of EdStories, hosted by Michael Zaffuts, Lauren Spiker (Founder and Director of 13thirty), talks about what 13thirty can offer to the community. Hear about what events are coming up, the new features of the center, and what other programs are offered at 13thirty this year. Also, hear part of Melissa’s story and how the organization came to be.

    To hear the podcast visit the EdStories, and to learn more about EdStories and see other available podcasts, you can visit Michael Zaffuts’ website.