• andi-rizal-320364

    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 lens 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.

  • jon-asato-246160

    Opening My Heart After Cancer

    I met my husband just about two years after I had finished cancer treatments. 

    I was still raw. I was terrified every day that I was relapsing. I had no idea how to have a new normal in my life, let alone know how to make a relationship a part of it.

    Cancer was something that would always be a part of who I am and whoever I met following cancer would have no idea, which meant that I was going to have to be the one to not only tell them, but to help them understand my “baggage.”

    Who doesn’t have baggage coming into a relationship? This is true; however, my baggage would affect most areas of my life including love, self-confidence, and intimacy.

    After I met my now-husband, I was scared. I was scared to talk to him; I mean really talk to him about myself. I was scared that the GVH (graft vs. host) scars would be visible to him and that I would seem ugly. The story, while comedic now, goes that he asked me to be his girlfriend for the first time and I said no.

    I really, truly liked him and loved spending time with him; however, my fears were too great. I knew that I needed to start being honest about my cancer experience. After multiple serious conversations about what I had been through, what I had seen friends go through, and what I was still dealing with, my husband asked me, again, to be his girlfriend — and this time, I said yes!

    I’d like to say that once I was in a relationship, all my doubts and fears disappeared and my self-confidence was completely restored. But this was not the case.

    Sicknesses and ailments came that now not only terrified me, but terrified the other person that I brought into the equation. I still struggled with being able to love myself again, which made it that much harder for me to allow someone else to love me. I had been so hardened by the friends I lost during cancer that I didn’t (and wouldn’t) allow myself to believe that anyone else would stay with me after cancer.

    Having relationships after cancer doesn’t just add another person to your equation, it’s adds a whole new family and another set of friends. I didn’t do any public service announcements to tell everyone about my cancer but it was something that, after time, I chose not to hide. I was open with my husband’s family and his friends. I chose to let them see the strength I had rather than the fears that seemed to overwhelm me at times. The only thing harder than telling my future husband that I could not give him a family was having to tell his parents that I was not someone who could give them grandchildren in a traditional sense. But they continued to love me just the same.

    Beating cancer was one the hardest things I’ve ever had to do, but surviving my cancer has been the bigger challenge.

    I push to survive every day now, and the best part is that I have someone alongside me to do it with. Everyone may not get their “fairytale ending”, but I am so happy that I got mine. My husband is the greatest man; he is so strong and confident in all the areas I am not. He is reassuring even when he is scared. And, when I had to share with him that cancer would also affect having a future family, he took everything in stride and supported me. I have been through the ringer — but so has he.

    Supporting me in the aftermath of cancer is not easy; learning that we would not have our own biological children is a loss that we still grieve, but I have found someone who may not have been there for that chapter of my life, but who certainly understands all of those pieces of me.

    Bottom line…relationships are hard. They’re intimidating and they require work, even without adding cancer to the equation! When you find that right person, however, they will accept you for who you are, including your cancer. And they won’t mind the extra “work,” finances, and fears that come with someone who is a cancer survivor.

     


    About the Author 

    Screen Shot 2017-10-05 at 10.47.14 AMPaige Strassner is one of our 13thirty participants! She graduated from Roberts Wesleyan College in 2013 with a B.S. in Nursing. She currently works at University of Rochester Medical Center in the Medical Intensive Care unit.  She enjoys spending time with family and friends, singing, and exercising.

  • goldhands

    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!

  • 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!

  • warren-wong-277326

    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!