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    The Lessons of Cancer

    I was diagnosed with leukemia when I was 22, right in the middle of graduate school.

    Having cancer was not personally the terrible experience that I believe most people picture when they think about being diagnosed with cancer. I really looked at having leukemia as a learning experience, especially because I am going into the medical profession. Even when diagnosed, I was honestly relieved that there was finally a reason why I had been feeling sick for so long.

    Having a diagnosis was like having a goal for me — knowing that leukemia was something that I could beat.

    There were certainly some bumps along the road, like having a reaction to chemo, getting hospitalized right before finals week, and missing exams. And, not being able to graduate with my friends this past year was probably the most disappointing moment through my treatment. However, I would say with certainty that the positive experiences outweigh the negatives.

    My relationships with my friends are just as strong, if not stronger now than they were before I had cancer, and I even made some new friends in the process. I was able to convince my family that I needed a dog. I learned a lot about love and sacrifice from my family. And I found that I am really passionate about helping other young adults with cancer.

    I really do believe that everything happens for a reason — I had cancer so that I could help somebody else.

    I recently finished chemo, and I am not sure what I was expecting because when I think about what cancer looked like in my mind before all of this, I don’t think “post-cancer” was anything I ever envisioned. It certainly isn’t ever portrayed on TV or in the movies. The only thing I can really relate having leukemia to is to running a half marathon. When you start the race, you are thinking about the end goal, of finishing, but aren’t thinking about after. When you start the race, you think about making it to small milestones, like the first 3 miles (or the end of your first cycle of chemo). Next is the half way point which is a boost (for me this was getting to go back to school). Your legs are tired, but you don’t notice because you are so focused on making it to the finish line. Then, you only have a mile or two left when you are really fatigued — but you don’t really notice because you know you’re almost at the end (knowing that you only have a few procedures left).

    Finally, you cross the finish line and you stop running. And it hits you: your toes all have blisters, your calves are burning, your mouth is dry, and you are exhausted. You have met your goal, so you don’t have anything to focus on and you finally feel the weight of the 13.1 miles you just ran.

    This is what it was like to finish chemo. I got to the end, which was such a great feeling, but I finally realized how tired I was.

    It finally hit me what I had just been through over the past 29 months.

    I don’t know if I thought my life was just going to magically go back to how it had been before cancer…but I honestly feel kind of weird. Being post-treatment now, I feel like I need to re-learn what “normal” is again. This has been a lot more difficult than it was to adjust to having cancer.

    However, I know if I look at this through the lense of my cancer — an experience to learn and grow from — I will be able to take something from it and help others try to navigate “normal”.

    If I’ve learned anything so far, it’s that cancer might leave you physically, but it never really goes away. Every day I have a choice to let that impact be positive or negative.

    Finding the positives aren’t always easy. But, because of all of this, I definitely choose to try to see the good in every situation, see the beauty in the world around me, and see how I can be a better person and use what I’ve learned to positively impact others.


    About the Author 

    catCat Gawronski is one of our 13thirty participants! She was diagnosed with cancer in 2015 and has recently finished treatment. She is in her last year of pharmacy school at University at Buffalo.

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    Celebrating Life at Journeys!

    On November 4, we will gather once again to celebrate the lives of all the teens and young adults with cancer that we have been privileged to know and love over the years. This will be the 16th Journeys, our Annual Celebration of Living!

    If you’ve been to Journeys, you know how special this night is. If you’ve never been, I hope this will be the year you will join us because Journeys is unlike any other charity gala. In fact, we don’t call it a gala because there is no formal dress, the special themed centerpieces are fashioned on my dining room table, and there are only a few, short speeches! We call it a Celebration because that’s what we do.

    We celebrate all the kids who have inspired us to be the best we can be and to give as much as we’re able.

    Past 13thirty members, whose bonds of friendship were forged years ago, reunite as if no time or space has separated them. Present members welcome potential new members in friendship. Our families share stories with common themes and guests who have not been touched by adolescent and young adult cancer are forever changed by the energy in the room.

    During the cocktail hour, student groups provide the music, enthusiastic volunteers sell raffle tickets and corks for the wine pull, while delicious appetizers are passed by the wonderful staff of Creative Caterers. After dinner, the program starts with our time-honored, candle lighting ceremony, during which we remember our friends who — though gone — continue to warm our hearts with their light. We recognize special folks who have helped us. This year’s “Corporate Sponsor Salute” goes to ValPak of Rochester and Dr. Barbara Asselin will receive the “Make a Difference Award.”

    And then, it’s time for the highlight of the night: The kids’ performance!

    Each year, we have a theme around which the “kids” of 13thirty Cancer Connect craft a presentation that will give our guests an authentic view of what it’s like to be a teen or young adult with cancer. As you might gather from our invitation, this year’s theme is “Bridges” —  but I’m not going to say any more. You’ll just have to come and see for yourself what we’ve put together for you! We are thrilled to be working with Larry Moss and Kelly Cheatle from Airigami (airigami.com) this year. Here’s a clue – there are balloons involved. Lots of them! Local poets, Charlie Cote and Danielle Shied, helped the kids put feelings to words and our friend Dan Roach, as always, makes us sound and look great!

    It’s going to be an amazing night and I hope you will be there because if you are, you will see what keeps me going every day.

    When Melissa died, our hearts were forever shattered but I knew we were strong enough to carry on, to continue living, to somehow put one foot in front of the other. What I didn’t know was just how much better I could be, how much more I could love, how much joy I would find in the young people I work with every day. They are the beacons of hope in this (sometimes) dark world. They rise above the small things and keep focus on what’s important. They truly live and love life and I am so very proud of them all.

    I promise you, Journeys is a night you don’t want to miss! You can RSVP online until Oct. 26 at www.roc.13thirty.org.

    See you on November 4th!


    About the Author

    lauren-spiker-1Lauren Spiker is our founder, executive director, and chief visionary with a pulse on what’s happening in the world of AYA oncology. Her dreams are big and bold!

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    The Power of Community

    Most definitions of parenthood are variations on a theme – “The state of being a parent.”

    This is a useful construct if you understand what it means to be a parent but for many of us, parenthood is an ever evolving, often terrifying, but always rewarding job. Most of us learn what it means to be a parent through trial and error until we settle into the role. After a while, we get the hang of it.

    But if you’re a parent of a child with cancer, this quote probably resonates: If parenthood came with a GPS, it would mostly just say: RECALCULATING.

    When you child is diagnosed with cancer, all bets are off. Each day brings new challenges and even greater unknowns. Everything you ever thought you knew becomes unclear and decisions once made without thought are now scrutinized and agonized over. Routine flies out the window, hospital procedures dictate schedules and sleep is brief and interrupted. Healthy eating? Forget about it. Many of us rely on caffeine, fast food, and the undying love for our children to keep going each day.

    When added together – sleep deprivation and coffee overload, junk food and escalating stress – the toll on cancer parents is high.

    Taking care of those we love takes priority over self-care.

    That’s where 13thirty Cancer Connect comes in. Thanks to a grant from the Greater Rochester Health Foundation and Excellus Blue Cross Blue Shield, our parents are making the time to take care of themselves. 13thirty Fit – Parents is a 12-month program offering physical fitness classes, gentle yoga, and free massage to help alleviate the burden of caregiving.

    Just like our programs for teens and young adults, our parents’ programs are designed to help weary parents build a new peer community with others who understand. At 13thirty, everyone ‘gets it’, so words are often unnecessary. Support is free for the asking and the coffee pot is always on!

    If you are a parent, come and visit our Center. We’ll give you the nickel tour and listen for as long as you need. Contact Steve at (585) 563-6221 to register for fitness or yoga and to make a massage appointment. Not only will you feel better, you’ll make new friends with like-minded folks.

    You deserve that and more, don’t you think?


    About the Author

    lauren-spiker-1Lauren Spiker is our founder, executive director, and chief visionary with a pulse on what’s happening in the world of AYA oncology. Her dreams are big and bold!

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