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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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    Uncovering My Scars

    When I was 15 years old, I was diagnosed with osteosarcoma; a rare form of bone cancer.

    I underwent months of chemotherapy and an intensive limb salvage surgery that left me with a total knee replacement and metal rods the entire length of my right leg. Due to some complications, I underwent a second surgery, where I underwent a skin graph and muscle graph, to close up the wounds from surgery.

    This, of course, caused some pretty crazy scars. Scars that I’ve struggled with for the 12 years I’ve had them.

    I wish I could tell you I embraced them like I embraced my cancer diagnosis, with laughter and optimism, but I did not. I hid them for years. I hid them for five years to be exact. I was the crazy looking person on a 95-degree day wearing long pants. If I did get brave enough to wear shorts, I covered my leg in bulky braces that served no purpose other than to cover me up. I had seen the stares I got the few times I ventured out with just shorts on, and I hated every minute of it. I watched people crane their necks to get a better look and I focused intently at people in large crowds, scanning for eyes on my leg. I could always find them and I always felt them.

    It took me five long years to realize that people are going to stare and that I shouldn’t let it affect me any longer. Having 13thirty as such a significant part of my life helped me overcome these struggles tremendously. The more people I met at 13thirty, the better I felt. I watched in awe as they were rocking their bald heads and scars (seemingly) without a care in the world. Slowly but surely, I was building my own self-confidence. I stared at them, not to be rude, but because I was overwhelmed with how they carried themselves and how powerful they must feel to embrace all parts of their cancer journeys, even if it meant they looked a little different at times.

    The more I was around these types of people, the more I began to throw my insecurities out the window. If they could be proud of their scars, then there was no reason I couldn’t be too.

    Fast-forward to today, and I’m a completely different person when it comes to my scars and insecurities. I don’t care if people stare anymore. In fact, I want people to start staring, to start asking questions. I’m proud of that part of my life and truly believe the experiences I’ve been through have shaped who I am today. I enjoy telling my cancer story and I hope that by doing so, I can help others through their struggles, whether it be physical, mental or emotional.

    If I had any advice to give someone struggling with the after-effects of cancer, it would be to not wait as long as I did. Rock your bald heads. Rock those crazy scars. You’ve been through more than most people can ever imagine, and you should never feel bad about that.


    About the Author 

    brittanyBrittany McNair is one of our 13thirty participants! She is an 11 year cancer survivor, married with a puppy, and a baby on the way!

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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! 

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    Cancer Taught Me How to Deal with Heartbreak

    It’s a phrase you’ve probably heard once or twice…“Thank God _____ happened!”Personally, this has haunted me for years; thirteen to be exact. Thirteen years ago, I went out for ice cream and came back with cancer. Sounds crazy, right? Well I may have left out a few details…

    To make a long story short, I was in a car accident. It was a summer night, and I was on my way home from getting ice cream. While being examined after the accident, a large mass was discovered in my chest. Two weeks later, after many tests, I found out I had cancer.

    From then on when I tell my story, the only response I ever hear is, “Thank God you were in that accident!”

    It’s a nice thought, really. I get how people are trying to find the positive in a devastating situation. But honestly, at 19 years old…it was the last thing I wanted to hear. And thirteen years later, I’m still getting the “Thank God ____ happened!” response, and I think my eye twitches a little bit every time I hear it.

    Now don’t get me wrong, I am thankful I was in that accident because who knows if we would have found the cancer before it was too late! But still…something about the “what ifs” starts to get the better of me. And in the past year for me, life went from being the most exciting time to probably the one thing more devastating than cancer: heartbreak.

    I would imagine as a parent, watching your child go to battle with cancer is heartbreaking. My poor mom; not only did she have a sick kid, she had a sick “young adult” who wasn’t very pleasant to begin with. She was definitely heartbroken, but she’s tough as nails and never let me see it.

    So, when heartbreak happened to me earlier this year, it was the first time in my life that I knew what pain really was. Cancer wasn’t painful, it was inconvenient. But this current situation was true, raw pain.

    I found myself reflecting back on the “cake walk” that cancer was. I found myself back in the same “Thank God ____ happened!” mindset before I made the potentially biggest mistake of my life. This time, when it was something I really cared about, I finally understood.

    We learn our life lessons in many ways. People say that “everything happens for a reason” or that it “builds character”. Throughout my life experiences, I definitely learned some things; some were easy, some were hard. In the end, it’s doesn’t matter what life throws at you: cancer, heartbreak, loss… what matters is what you do with those experiences. They are what make you who you are.

    As much as I hate to admit “everything happens for a reason”, it does. There is a master plan that we don’t necessarily create, but we navigate between the good and the bad. We use life’s teachable moments to feed who we are and how we live our lives. Many of my survivor friends have expressed feelings of “little things don’t matter anymore” or how big things become little things when real big things happen.

    As much as I’d like to forget or pretend like I never had cancer, I did. And it was a big deal, until the next big deal came along. I think about what that experience taught me, and how it made me the person I am today. I’m strong, smart, determined, compassionate, and optimistic. I’m able to find the positive in all things because I’ve seen that it’s not a “big deal”. Learning to have a thick skin through cancer helped me understand that heartbreak really isn’t so bad.

    It could be worse and in the end: I’m a Survivor.

    So the next time someone says, “Thank God ____ happened!”, I’ll suppress my twitchy eye and say, “Yes, I’m thankful every day.”

     


    About the Author

    UntitledKaren L. Rector is one of our 13thirty participants! She graduated from St. John Fisher College in 2007 with a B.S. in Management – Marketing. She currently works at Windstream Communications in the HR – Training & Development Department as an Instructional Designer. She enjoys spending time with family and friends, going to local festivals and hosting parties.

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    Journeys 2017 – SOLD OUT!

    **Journeys is now SOLD OUT! Thank you for your generous support!**

    16th Annual Celebration of Living

    November 4th, 2017 6:00PM
    Temple B’rith Kodesh
    2131 Elmwood Ave
    Rochester, NY 14618

    Please join us!
    Silent Auction, Raffles, Wine Pull, Cocktails, Music, Dinner and Dessert!

    Make a Difference Award
    Dr. Barbara Asselin Golisano Children’s Hospital

    Corporate Sponsor Salute
    Valpak of Rochester, Inc.

    Special Performance
    The Bridges of 13thirty With Special Guest Artists Larry Moss and Kelly Cheatle Airigami.com

    Purchase Tickets

    Single Ticket: $75

    Table of Eight: $520

    Sponsor a Teen Family: $225

    Contact info@13thirty.org or call (585) 563-6221 for more information.

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    13thirty Fit – Working Out Together!

    You know that exercise is always more challenging with a friend. Whether you’re hitting the gym together, being nutrition-conscious, or meeting up for a run, you help each other reach your goals and feel great together at the same time! Now imagine a class of about 10 people, specifically designed for those of us who have come through surgeries, undergoing cancer treatments of various degrees, and various levels of fitness capabilities. Talk about upping the ante!

    At 13Thirty Fit, every Wednesday night, we are pushed, challenged and changed together. We are choosing to make time for ourselves, encouraging each other—no matter what our week has looked like, what difficult situations we’ve faced, or how we’re feeling!

    Katlyn Hutchings - NutritionistKatlyn Hutchings – Nutritionist

    Another big piece of 13thirty Fit is nutrition. This past Wednesday, we were taken back to our childhood snacks (in this case, “ants on a log” with locally produced Once Again Nut Butter) and discussed the importance of a whole-foods and nutrient-rich diet. Exercise is important, but what you put in to your body is even more vital to daily health!

    As we build up to two 5Ks this May, I’m determined to keep pushing the limits and challenging myself. Cancer is a tough battle and knowing that you’re surrounded by a community of like-minded friends, who are working hard right alongside of you, is so uplifting and inspiring. Making our bodies fit, healthy and strong is the goal—but growing together and creating a safe, understanding community as we continue on our journey is the true reward.

     

     

    About the Author

    Sabrina_photoSabrina is one of the awesome young adult survivors participating in 13thirty Fit! To read more of Sabrina’s work, visit her website, sabrinagauer.com

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    Grand Opening of new Rochester Center

    13thirty Rochester just moved to a new space!