13thirty Threads: Life Was Perfect
Life Was Perfect – Vicki Ties It Together
13thirty member, Emily (Acute Lymphoblastic Leukemia) reflects on her life before her diagnosis.
“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
– Maya Angelou
Think about that……the moments that take our breath away. Throughout our lives, Ms. Angelou’s words resonate with each of us in vastly different ways. For those of us who have faced the challenge of a cancer diagnosis, her words are a powerful anthem, a testament to who we were, and who we are today.
When you sit in a chemo chair for hours on end, your mind tends to wander. As you glance around the treatment room, you can’t help but wonder…. How did I get here? I would reflect on the days and months before my diagnosis. I recalled the thrill of mountain biking in Colorado, the exhilaration of skiing in Utah. The joy of hiking the Adirondack peaks with my husband and my beautiful Siberian Husky. The majesty of Lake Tahoe as I said my wedding vows. I was checking off boxes from a bucket list beyond my wildest dreams……life was perfect.
Then, the diagnosis. My entire world, as I knew it, ground to a screeching halt. I was challenged beyond the scope of anything I thought possible. Talk about taking your breath away!
But, in time, you do start to breathe again. As you go through life, you learn a lot about the world. The people you meet and the experiences you have combine to create a beautiful tapestry. I can tell you that you learn a lot more about yourself when you are forced to be still. Your wounds impart wisdom and your story nurtures hope.
Life was perfect.
Correction…..life is perfect.
Keep shining brightly my friend. Never dim your light. The best is yet to come!
Peace, love, and light.
Be well,
Vicki
13thirty Threads: The Diagnosis
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
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
Brittany McNair is one of our 13thirty participants! She is an 11 year cancer survivor, married with a puppy, and a baby on the way!
When You’re Feeling Alone
“You are enough exactly as you are. The world needs your gift and the world needs your story.” – Crystal Paine
If you’re anything like me, these thoughts have swirled through your mind and played with your emotions more than once as you’ve navigated through the ups and downs of diagnosis, treatment, and recovery. Or maybe you’re a parent walking through this with your child (no matter what age they may be), or a sibling watching your sister or brother on this hard journey, and you know that pressing weight of loneliness and being misunderstood.
It seems while everyone else gets to go on with their lives, you’re stuck in this weird twilight zone of dealing with disease.
Can you relate?
For me, being 27 years old and newly diagnosed with cancer, I felt disconnected from my friends. Even two years later, I still find it hard to relate to others who haven’t gone through the hard times that have made them stronger. But I found myself needing and learning to surround myself with understanding community.
I found that here at 13thirty Cancer Connect, and through other amazing organizations who have set out to create that community for AYA cancer patients and survivors.
To have friends here in Rochester, NY, and all over the country now who have been through it, and who get it, is more of a gift than I ever could have realized without walking through my own struggle. And just as their support and understanding has uplifted me, I have been able to share my story to encourage others as well.
Here’s the truth: You are NOT alone, and your story MATTERS.
We’ve talked about why support groups are important, but the fact remains that many AYA cancer patients and survivors are prone to depression, loneliness, and isolation due to their diagnoses, treatments, and the lingering after-effects of cancer; whether physically, emotionally, or spiritually. And support and wellness groups that offer hope, encouragement, friendship, and high quality programs that foster creativity, positivity, and safe space to share organically about experiences through diagnosis and the cancer journey can greatly combat those statistics!
At 13thirty Cancer Connect, you can embrace community, wellness, and support through all the highs and lows. You are NOT alone. We all get it here. And we are all in this together — living our BEST lives, TODAY! Visit our Rochester page 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 Instagram for more tips and encouragement for whole health and wellness living!
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!
5 Ways to Stay Healthy this Summer
I don’t know about you, but it feels as though every May, I start mapping out all the awesome summer plans I have; swimming, being at the lake with friends, trying new restaurants, attempting a roadtrip, hiking, and looking forward to warm summer evenings around bonfires. Pinterest and Instagram are filled with snapshots of happy people seemingly having the time of their lives (which, of course, is hardly ever the case!).
But, suddenly it’s mid-July, and I haven’t accomplished most of that!
Maybe time is flying by for you, too. But as the days get busier and fuller with things to do, we tend to let our health slide to an after-thought. As cancer patients and survivors, it’s even more critical to pay attention to our health and wellness, and to be careful to make space for relaxing and stress-relief!
Here are five easy ways we can focus on staying healthy this summer!
- Put the phone down.
Let’s be honest- whether you’re in the hospital right now while it seems all your friends are out living “carefree” summer days, recovering at home with energy levels that require more naps than endless summer nights, or you’re back at the routine of life and trying to keep up with the everyday, social media is an easy way to lose track of time and create a severe case of FOMO (fear of missing out). 
Give yourself a break! You’re doing great! Schedule times in the day when you let mindless scrolling happen – but don’t forget to turn the phone off for a while and connect with actual, real life.
- Rest!
One of the hardest things to do is listen to your body. When we ignore our need for rest and recovery, we cause ourselves more harm than we realize. Find what makes you feel rested: reading, a nap in the hammock, taking a second to breathe and practice mindfulness. In a culture where being “busy” makes us feel most productive, it’s imperative to our healing to take time and rest.
- Protect your skin.
With skin cancers continually on the rise, it’s not surprising that sunscreen usage is even more important these days! Make sure your sunscreen is as natural as possible (i.e., no cancer-causing chemicals!), as it only takes about 20 seconds for anything applied to your skin to reach your bloodstream! Visit the Environmental Working Group’s website for a list of best sunscreens to use this summer.
- Eat local!
Seasonal fruits and veggies will nourish your body and spirit this summer! Visit your local farmer’s market, or gather up some friends and go blueberry-picking at places like Wild Hill Farm, or look for the “Locally grown” signs in your favorite grocery store to support sustainable growers 
in your area! When you buy produce in-season, you are saving money and eating the freshest, most nutrient-dense, immune-boosting foods.
- Enjoy the little things.
Practice gratitude. No matter where you’re at this summer – whether life looks exactly like you want it, or you’re facing an uphill battle right now – every day is a new day to be thankful for the little blessings. It’s not always easy to see the bright side, but the more you practice being grateful for the small things, there’s something beautiful that happens inside of you. When you can see beyond your current circumstances and see a glimmer of light, it’s life-giving and strengthening.
No matter the season, your health should always be a top priority.
Whether you’re starting from scratch or you’re already working on living a healthy lifestyle, it’s always easier when you have support and encouragement! At 13thirty Cancer Connect, we’re here to support you in your whole wellness journey through connections with each other, our 13thirty Fit! programs, yoga and massage, activities and events that bring us together (like our 2017 Bandana Bolt!) and helping adolescents and young adults (AYAs) impacted by cancer live their very best lives – today! Check out our events page and follow us on social media (Facebook, Instagram, and Twitter!) to stay up-to-date on how to 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!
Journeys 2016 – RSVP Now!
Reserve your Journeys 2016 today!
15th Annual Celebration of Living
October 15th, 2016 6:00PM
Temple B’rith Kodesh
2131 Elmwood Ave
Rochester, NY 14618
Please join us!
Silent Auction, Raffles, Wine Pull, Cocktails, Music Dinner and Dessert
Make a Difference Award
Dr. Amy Parkhill, St. John Fisher College
Corporate Sponsor Salute
Excellus Blue Cross Blue Shield
Presentation
The Faces Behind the Masks Our 13thirty teens and young adults reveal the real faces and stories that cancer often masks. You’ll be inspired!
Purchase Tickets
Single Ticket: $75 
Table of Eight: $520
Sponsor a Teen Family: $225
Contact info@13thirty.org or call us at (585) 563-6221 for more information.
The Secret Sound
We sat in the middle of the lake, the water smooth as glass. The echo of Rick’s Mongolian flute playing the Shaker hymn, Simple Gifts, reverberated against the hills and in our hearts. In the quiet stillness, I read aloud a poem by Kabir.
If you want the truth,
I’ll tell you the truth
Listen to the secret sound,
The real sound
Which is inside of you.
As the night fell, clouds hid the stars but the warmth of friendship and shared experience radiated brightly. Each in our own way had been touched by cancer. Some through personal diagnosis, others by association. All keenly aware of its presence. Though often hidden, like the stars, the shadow of cancer is always there, a constant reminder of the fragility of life. But on this night, we were strong and cancer was the thread that held us all tightly together in faith and friendship.
As we floated in tethered canoes, we ate strawberry shortcake under the darkening sky. We talked about being present in the moment, about our lives and those around us. We listened to stories about cultures different from our own where the words “please” and “thank-you” are unnecessary because kindness is just a way of life, not something to ask for and acknowledge.
Together in silence, we listened for that secret sound inside ourselves.
That sound that all too often gets lost amidst the noise and bruising clatter. That real sound that beats deep within our souls, refusing to be drowned out by the boisterous blather that permeates our lives. That sound inside each of us that guides our course when skies are dark and we can’t see the stars.
Before returning to shore, the sweet sounds of Amazing Grace bounced off the water and the now, pitch-black sky. For me, this night was a powerful reminder to quell the noise that sometimes threatens to distract, distorting the sounds that really matter. What if we all listened to those sounds more often?
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.