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
20 Years of Memories
Journeys 2020 marked 13thirty Cancer Connect’s 20th year of making a difference for teens and young adults living with cancer. Journeys is an annual celebration of life where our members and their creativity are featured in a performance that our families and supporters are invited to watch. Though we wish we could have celebrated together in person, this year’s virtual event allowed members living around the country to watch from the comfort of their own homes. The pandemic has challenged us to adapt our programs and events to formats that allow members to safely connect with one another. Our generous sponsors have helped make our continuum of support possible during these uncertain times.
Journeys 2020 included a performance of the Maroon 5 song, “Memories” sang by 13thirty members. This year’s awards went to Doug Spiker for the Make a Difference Award and Jim Blaesi of Blaesi’s Automotive for the Corporate Salute. Watch the song performance or the full event hosted by Corrie Carter from Polite Ink on our YouTube channel:
Special Thanks
We owe a special thank you to Anthony Siciliano of Head to the Roots for opening the event with soothing acoustic music.
If you enjoyed our Sips and Starters packages this year, we can thank Chef’s Catering, Flash Point Customs, Eastway Liquor and Wegmans for their help creating them.
The “Memories” performance was put together by Matt Sengbusch and Jon Madden.
A Great Day for the Bandana Bolt
“The National Cancer Survivors Day Foundation defines a survivor as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”
This year we celebrated our 8th annual Bandana Bolt the same day as the 33rd National Cancer Survivors Day. Our hearts at 13thirty Cancer Connect were warmed by the overwhelming virtual participation in this year’s Bandana Bolt 5k run/walk. We had participation all over the country, from coast to coast celebrating cancer survivors everywhere.
“Fun Facts” about the Bandana Bolt 5K:
Bandanas are often worn by AYAs in treatment, hence the name – Bandana Bolt!- Although held virtually, 2020 was the 8th Annual Race. 2013 was our first year and we haven’t stopped running since!
- The Rochester race is always held at Seneca Park.
- The first few years the race was held in the fall, the morning right after Journeys!
- With the exception of the 2020 design, the bandana design is typically a snapshot of a piece of work from NYC based artist and one of Melissa’s brothers, Mark Sengbusch. One of her other brother’s Matthew, helps us with the graphic design.
- Every year, our AYAs create handmade custom butterfly medals for our race winners (due to COVID-19, we missed the tradition this year!)
- The 1st Annual Bandana Bolt 5K – Syracuse will be held on Sunday, October 4th at Green Lakes Park. Fingers crossed!
Not only does the Bandana Bolt help 13thirty Cancer Connect support our AYAs living with cancer, it raises nationwide awareness on their behalf. There’s no “good” time to have cancer, but being an AYA living with cancer is particularly challenging. AYAs are caught in the gap between pediatric and adult medicine and have seen little improvement in survival rates compared to other groups. Being separated from their peers and dealing with a diminished self-image presents unique challenges for AYAs. Read more about how 13thirty Cancer Connect advocates for AYAs living with cancer.
Can’t get enough of this year’s Bandana Bolt? Check out our Facebook page for more photos.
Alone Together
Treatment Isolation
In these recent weeks, we have experienced a world lacking physical contact and social interaction in efforts to stop the spread of the Coronavirus Disease. To keep our communities safe, many non-essential workers have begun to work from home, while others have lost their jobs due to this pandemic. Education has become online-based and fitness centers have closed. The regular things we do to take care of ourselves are less accessible. COVID-19 can feel isolating for those of us at home, but for those currently in treatment, isolation has become a priority for safe treatment.
When new patients enter into cancer treatment, they are usually greeted with support from the medical team— a team who can provide initial comfort through a hug, a shoulder to cry on, someone to lean on. Cancer patients were also accustomed to bringing a family member to treatment for support, but now they are left feeling alone and scared. Local hospitals have tried to ease this with e-readers for patients to stay active and Zoom meetings between patients and staff to better the patient experience. Read more about their efforts to help patients through these growing challenges of social distancing.
Virtual Peer Programs
At 13thirty Cancer Connect, we are committed to our mission to provide peer to peer programming for AYAs living with cancer. We plan to continue hosting weekly peer programs in all of our regular categories: arts, wellness, and social. Instead of using our Rochester and Syracuse Centers, we are hosting programs via Zoom virtual video chats. This way we can safely stay connected and engaged with one another. If you’re in treatment and joining us for the first time, email Megan or Steve to RSVP and get the Zoom meeting information. Remember, we are alone together.
Share With Us
What are you doing for self-care during this time?
Do you have a daily routine that helps you stay in good spirits? Are you looking for suggestions to stay active?
How are you staying socially engaged with your peers?
Are you using Zoom and social media to stay in touch? What activities have you done together virtually? Are you looking for peers to connect with? You can join us for our next virtual program whether you’re currently being treated or social distancing at home. Check out our calendar of programs and events.
What virtual programs would you like to see 13thirty Cancer Connect host?
Have a movie night suggestion? Maybe you’d like to have a video game competition. Let us know in the blog comments section or connect with us via email today.
If you need immediate emotional support please use the state resources provided below:
OMH Emotional Support Helpline: 1-844-863-9314 *
The Emotional Support Line provides free and confidential support, helping callers experiencing increased anxiety due to the coronavirus emergency. The Help Line is staffed by volunteers, including mental health professionals, who have received training in crisis counseling.
Check out other New York State mental health resources.
Biking Through Chemo
At 13thirty Cancer Connect, we dedicate peer programs to the following categories: arts, wellness, and social. Because of the current social distancing guidelines, it may seem hard to access activities in any of these areas. This may even feel familiar to social distancing experienced during cancer treatment. We know how important it is to feel connected to one another and to maintain healthy routines. While we can’t host in-person workout programs right now, we can’t stress enough how important it is to keep taking care of yourself whether you’re in treatment, in maintenance, or into survivorship.
Inpatient Exercise
Matthew Simon was about to start his sophomore year on his high school crew team when he was diagnosed with leukemia. His inpatient treatment lasted three weeks, but felt far longer because of the lack of social contact and physical activity that he was so accustomed to before treatment. Eventually, Matthew began using an exercise bike right in his hospital room to help his emotional and physical needs. He said getting regular exercise improved his mood and made him feel like he was contributing to his treatment with this healthy habit. Chemo treatment can make you feel fatigued and even depressed. Regular exercise can help combat these feeling while improving muscle retention and self esteem. Read more about Matthew’s story and other AYAs living with cancer who were able to use exercise bikes during treatment on the Washington Post.
Modify & Move
Before setting up a workout routine, learn your limitations. Make modifications where you need it in order to have the most effective workout. Check with your health care provider, physical therapist, or personal trainer about what workouts are suitable for you and where you are in your cancer journey. Remember, “any movement is better than no movement.”
Stay Motivated
Ways to stick to a workout routine:
- Invite a Friend – Plan to workout with someone else you live with or video chat a friend
- Schedule Time – Set up calendar notifications to remind you to exercise
- Partial Workouts – Even if you can’t complete a full workout, try and complete a portion
- Reward System – Work out after watching a show and once you complete it, you can watch the next episode
- Good Listening – There’s plenty of playlists, podcasts, and audio books available for free
What’s your at-home workout routine like? Can you use any of these tips to improve it? If you have a tip we didn’t list here, tell us in the comments below!
Look out for updates on virtual programs!
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.