• 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

  • laurel

    Meet Laurel

    Laurel Simer came to the 13thirty Cancer Connect Syracuse Center for a special visit earlier this month. Representing the Utica College Women’s Hockey Team, Laurel brought a generous donation raised by auctioning team jerseys as a part of their Gold Ribbon game. Read more about the fund raiser here. She also shared with us a little about her own journey with cancer.

    Meet Laurel - AYA Living with Cancer

    Laurel's Cancer Journey


    Laurel's Visit to 13thirty

     

    DIPG – A Rare Brain Cancer

    DIPG is very rare and most people had never heard of it until someone close to them was diagnosed. I think a lot of people hear about cancer and know that its bad. When you can put a face to it and show that this could happen to anyone—your friend, your coworker, your teammate– it makes it personal so it helps people learn about it more and care about it more. Some of my friends have shirts that say “DIPG Warrior Laurel” on them. Some even wear them whenever they travel somewhere, hoping that someone will ask about it so that they can tell my story and tell them about DIPG and help raise awareness that way.

    When I was playing at UC, Coach Clausen instilled in us the importance of being involved in our local community and giving back whenever and however we could. This is still a major value of the team today and I’m just so happy that they continue to spread awareness and hold this game each year.

    Why 13thirty Cancer Connect

    I learned about 13thirty from Charlie Poole and his family. He was also diagnosed with DIPG. I was finally able to meet Charlie and his parents in person in May, 2017 and it was great, they are awesome people. I hate the reason that we met, but I am very grateful that I know them. Although he has since passed away, I feel like Charlie and I shared a lot of the same feelings towards our cancer and being older than most people who get it (The typical age of children diagnosed is 5-10). We both understood the importance of raising awareness and helping out the kids however we could.

    13thirty seemed like a place that would be really beneficial for a lot of people. I actually wish that I had had something like it when I was a teenager. Charlie had also come to one of the gold ribbon games a few years ago so I thought this could be a perfect fit.

    What inspires hope in you?

    I have great friends who have been very supportive of me. Some of my close friends, they know that I still get nervous before a doctor’s appointment, I still worry about what my tests will show, but they are my rock sometimes and they are always there encouraging me when I need it. Just seeing the research that has been done recently– they have learned more in the past 5-10 years than they learned in 20 years before that. I think doctors and researchers are coming a long way, and they are making advances, and it just shows the importance of raising awareness. Because raising awareness and telling your story leads to funding, funding leads to research, and research will eventually lead to a cure.