• 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

  • lived

    I Lived

    “I lived” – Inspirational

    Leanna Ramirez was diagnosed with a rare and incurable brain cancer at fifteen years old. She went through four chemotherapy rounds, 33 radiation therapy rounds, and two surgeries. Unfortunately, not all of the brain tumor could be removed. Even through side effects like headaches and memory and hearing loss, Leanna found her way to hope and positivity.

    Her mother heard the song, “I Lived,” by OneRepublic, and turned its message into their family’s inspiration to live each day to its fullest. She encouraged Leanna to make an “I Lived” list of all the things she wants to do in her life, no matter how grand, not worrying about time. Through the help of a GoFundMe page, the family has gone on a helicopter tour of Hawaii, zip-lined in the Poconos, and played with koalas at the Columbus zoo. They were even able to take Leanna’s dream trip to New York City. The trip included ice skating at Rockefeller Center, taking a carriage ride in Central Park, and watching the ball drop on New Year’s Eve from Time Square.

    Leanna’s “I Lived” list has inspired both her and her family to live for today. They try to focus on how to enjoy each moment you do have instead of worrying about the ones you might not get. Now at eighteen years old, Leanna and her family are helping other kids with cancer write their own “I Lived” lists. Read more about the story on MSN here.

     

    Take Action:

    What would your “I Lived” list include?
    Do you want to travel? Take a college course? Attend a game for your favorite team? Maybe you want to learn a new skill?

    What are you proud of that you’ve already done?
    Do you volunteer in your community or with your school? Have you been part of a club? Did you made something for someone else? Are you a good friend to someone? Consider including the things that you’re proud of if continuing to do them makes you happy.

    Write Your “I Lived” List Today
    AYA Cancer gives people a unique perspective on life. Whether you’ve had cancer or someone you know has been affected by cancer, an “I Lived” list can inspire you to live in the moment. Comment on this post to let us know some of the items you included on your “I Lived” list.

  • story

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