• 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

    memoriesWe 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.

     

     

  • back to school

    Back to School

    It’s that time of year again! Returning to school will definitely be different this year, but there’s one thing that remains the same- there are tons of scholarship opportunities. There’s a common misconception that you have to have stellar grades to receive a scholarship. While there are many academic scholarships available, there’s plenty out there based on financial need, race, gender, academic programs, athletics, study abroad programs, and even cancer experience. Some are specifically for childhood cancer, young adult cancer, or specific types of cancer. Scholarships that are for students affected by cancer typically require a written statement or essay about how cancer has impacted your life, recommendations, and a note from a physician to confirm your diagnosis.

    Remember, most scholarships have specific application deadlines. If you miss the deadline, keep it bookmarked and apply the following semester or year. Some scholarships have rolling deadlines, so you have the opportunity to apply all year long, but early applicants have better chances of being awarded funds.

    Need tips on writing a scholarship essay? Check out SCHOLLY’s “Hot Tips for Writing a Winning Scholarship Essay” for guidance. Once you get those scholarships, be sure to send a thank you letter! Find examples here.

    Scholarship Links:

    General

    ($5,000) Cameron Siemers Foundation For Hope

    ($2,500) Baron & Budd

    (Varies) Scott Delgadillo College Scholarship

    (Varies) Kay/Moore Scholarship Fund

    ($10,000) Bristol-Myers Squib Scholarship for Cancer Survivors

    (Varies) NCCF Survivor Scholarship Program

    (2,000) Children’s Cancer Cause

     

    Specific Eligibility

    (Varies) Cancer Survivors’ Fundoffers financial aid to those needing prosthetics following cancer

    ($250 – $4,000) Cancer for Collegeoffers college scholarships to amputees and cancer survivors

    ($2,500) Ulman Cancer Fund for Young Adultsprovides a scholarship to young adults who were diagnosed or treated for cancer at age 15 years or older

    ($2,500) Matt Stauffer Memorial Scholarshipoffers $2500 to college students currently fighting cancer or who were diagnosed and treated after the age of 15

    ($2,000 – $3,000) Michael A. Hunter Memorial Scholarship: offers an annual scholarship of between $2000 and $3000 to those affected by leukemia or lymphoma

    (Varies) Nicki Leach Foundation: offers financial assistance to those who were diagnosed and treated for cancer between the ages of 18 and 30 years old

    ($3,000) Patient Advocate Foundation Scholarships for Survivoroffers scholarships for cancer survivors under the age of 25 and diagnosed within the past five years

    ($1,000 – $6,000) Tim & Tom Gullikson Family Support Fund: must be diagnosed with a primary malignant or non-malignant brain or spinal cord tumor prior to age 19

    (Varies) Jackie Spellman Scholarship Foundationprovides scholarships to deserving students whose lives have been impacted by leukemia and lymphoma

    ($1,000) The John Foy & Associates Strong Arm Leukemia Scholarshipscholarship will be awarded to one college student who has battled leukemia or whose life has been affected by it

    (Varies) Bone Marrow & Cancer Foundationstudent must have undergone a transplant and demonstrates financial need

    ($500) The Izzy Foundation: diagnosed before the age of 18 with pediatric cancer

     

    Scholarship Search Engines

    Scholarships.com: Cancer Patient/Survivor (or Child of) Scholarships

    Cappex.com: Cancer Scholarships

    ACCO.org: Financial Aid for Students

     

     

     

     

     

     

     

  • program info

    Fitness Friends 

    As we approach month six of quarantine, we have started to return to our usual routines, which for many include working out at our local gyms. A good workout, a crucial part of some people’s routines, benefits both our physical and mental health and serves as respite from our new normal but unfortunately, gyms remain closed.

    At 13thirty Cancer Connect, we recognize the impact of physical activity on our well-being, especially following cancer treatment. We have continued to offer our fitness programs virtually to our AYAs and their parents. All of our workout programs include Rochester and Syracuse members, making connections across counties. Both of our trainers have gotten to know members and their families from both of our centers.

    We are so thankful to have made connections with our local trainers— Michelle Dougan, CPT, from Elevate Fitness in Liverpool and Brianne Young, PT, DPT, from UR Medicine Home Care in Rochester. Our trainers have stuck with us through quarantine and adapted to our new remote program style via Zoom video chats. They both continue to challenge us at our monthly 13thirty Fit! and Parent Fit! programs. Check out our calendar and join us for our next fitness program!

    If you’re interested in one-on-one sessions with Michelle, contact her today via Facebook! https://www.facebook.com/shelsworkout

  • Happy 1st Birthday 13thirty Syracuse!

    birthday Syracuse

  • careers

    Cancer + Careers

    People around the country are feeling the impact of COVID-19 on their careers. This may mean lay-offs for some and new working conditions for others. For those living with cancer, going back to the workplace or looking for a new job can be scarier than ever before. Many fear job security or a lack of opportunities, but AYAs living with cancer also fear the health risk of going back to the workplace or being able to find a safe job. As a vulnerable population, those living with cancer may experience these crisis-caused challenges and need the help of some career resources.

    Cancer + Careers Resources

    Cancer + Careers helps those living with cancer become empowered in the workplace via online, print, and in-person resources. From the point of diagnosis, Cancer + Careers can help you navigate the legal and financial implications of cancer treatment. They even provide resources for helping coworkers become a support system.

    Cancer + Careers offers resources specific to the COVID-19 crisis such as workshops, webinars and available financial resources. If you’re searching for a new position, look into their tips on interviewing and use their resume review service. While we’re still in quarantine, take some time to view their videos on balancing work and cancer or read some of their free publications on working with cancer.

    Let’s keep our communities safe and continue to follow our local and state guidelines. For those in good health and returning to work, please be mindful of the challenges that AYAs may be facing due to this pandemic and remember to wash hands regularly and social distance to protect one another. Please read the CDC’s guidance for safe practices when returning to the workforce.

  • 2017 Overview

    2017, A Year to Remember

    We want to thank all those who volunteered and donated to 13thirty in 2017. You have helped us have a fantastic year full of a variety of programs and community events. We also want to thank our teens and young adults who take a leap by walking through our doors for the first time. Taking on cancer is brave and coming to a new place with new people and sharing that journey is extraordinary. So thank you for being open and helping one another by sharing your experiences about living with cancer.

    Take a look at our video below to get a glimpse of how proud we are of 2017!

    Stop in and visit us any time!

    IF YOU HAVE LEARNED ANYTHING FROM ME THROUGH ALL OF THIS, DO SOMETHING WITH IT TO MAKE A DIFFERENCE – TO MAKE THINGS BETTER.

    — Melissa Sengbusch