• 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

    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

    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:

    1. Invite a Friend – Plan to workout with someone else you live with or video chat a friend
    2. Schedule Time – Set up calendar notifications to remind you to exercise
    3. Partial Workouts – Even if you can’t complete a full workout, try and complete a portion
    4. Reward System – Work out after watching a show and once you complete it, you can watch the next episode
    5. 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!

  • 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.