13thirty Threads: Do Your Life
Do Your Life – Vicki Ties It Together
13thirty member, Jeremy (Hodgkin’s lymphoma) offers his advice to newly diagnosed teens and young adults.
Looking back, there were many times during my cancer adventure when I couldn’t visualize a future. Not because I lived in fear, but because I lived and loved in the moment. I realized that on any given day the course of my life could be changed in an instant.
I began to look at my life and the world in front of me through a different lens, one that provided me clarity and purpose like nothing I had ever experienced. I realized that I want to be the person who remembers your birthday and goes all out to make it special. The one who gives her time freely and shares her gifts with the world. The person who always does her best despite how she feels. The one who loves purely, with her entire heart, without judgment or barriers.
As Jeremy said in his video, “You only regret the things in life you don’t do. So, give everything a shot.” I have to say, he was spot on!
Do your life.
Not the life to make someone else happy, not the life someone wishes for you, not the life someone expects of you.
Do your life.
Do it big, do it messy, do it bold, do it wrong, do it with humility, do it with grace.
Do your life.
Do it sideways and backwards, do it multi-colored, do it loud, do it quiet, do it epic, do it brave!
Do your life.
The one you dream, imagine, hope for, the one you want with every fiber of your being. The one that brings you peace, makes you love better, laugh harder. Do the life you deserve!
Own your life!
Until next time my dear friends.
Peace, love, and light.
Be well,
Vicki
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13thirty Threads: I am Still Here
I am Still Here – Vicki Ties It Together
13thirty member, Kelly (Hodgkin’s lymphoma) reflects on how her relationships changed after her diagnosis.
From the moment you learn you have cancer, your life changes and so do the relationships surrounding you. There will be those that rally around you cheering you on, offering their kindness, and showing their support. Unfortunately, there will be those that run away, hide, become distant, and eventually disappear. This happened to me. Has it happened to you?
When this happened I wanted to shout…I am still here! I am still the same person I was before cancer. Yet, I knew I wasn’t. My perspective had changed. My priorities had changed. And as a result, my relationships changed.
It is difficult to lose connection with someone close to you, especially during a time when everything seems so out of control. But at the same time, you are presented with a unique opportunity to open your heart and make room for new relationships. The friendships that I built during my cancer adventure are some of the nearest and dearest I will ever know, the beautiful souls that carried me through. Yes, they know who they are. They are forever in my heart.
You see, it is not you causing this rewiring of your relationship network – it is the disease. You are just getting a rare glimpse into the human condition. Your family and friends are merely showing their inner selves. Who is strong? Who is optimistic? Who is scared? We all handle difficult times in different ways. My advice – continue to love the ones who have run away and show grace to the ones who have disappeared. If it is meant to be, the universe will guide them back.
Until next time my dear friend.
Peace, love, and light.
Be well,
Vicki
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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
Refocus the Lens
In August, we introduced a new expressive arts series, Refocus the Lens. Members of 13thirty Cancer Connect submitted a photo that reminded them of the time when they were diagnosed with cancer. Some photos reflected one of the last moments when cancer was not on their minds. They may have been going off to college….
Lucas, 21
…or striking a pose as a dance major…
Kara, 19
…or just being a teen hanging out with your friends.
Alyssa, 19
For others, the photos represented the shock of diagnosis, or the interruption of life. Erma (17) was enjoying her senior year of high school when finding out she would need months of inpatient treatment.
Riley (21) beat cancer once and was a photography major in college upon being diagnosed once again.
See more of Riley’s work on Facebook at Riley Murray.
Being an adolescent or young adult (AYA) is already a difficult time, without adding cancer to the mix. AYAs with cancer face challenges specific to this age with regard to social connections, independence, appearance changes, and school or career goals. At 13thirty Cancer connect, our members know what it’s like to cope with these unique challenges and they find support in one another. In this time of COVID-19, connecting remotely poses a new set of challenges but sharing the experience of AYA cancer with others who understand helps to break those barriers.
Join us on September 21st, 2020 at 6:30 EDT on Zoom for the second program in the Refocus the Lens series when we will share photos reflecting treatment.
No Bake Nutrition – AYAs
Steve teaches us two easy no-bake tutorials for simple protein packed snacks. Buy ingredients beforehand to follow along or just watch & chat.
Workout with Michelle – Families
Our trainer, Michelle, will lead a half-hour workout to help with our home workout routines. Bring your sibling or parent!
Happy Hour – Parents
Grab your drink of choice and enjoy some much needed social time with other Rochester and Syracuse 13thirty parents.
Mother’s Day Craft – AYAs
Let’s make our moms a Mother’s Day card together virtually. Use any supplies available and we’ll help with ideas.