Happy Hour – Young Adults 21+
Grab your drink of choice and get the chance to socialize with other 13thirty members 21 and up in this time of social distancing.
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.
Family Feud
Join us for a virtual game of Family Feud on Zoom and catch up with Rochester and Syracuse 13thirty members.
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:
- Invite a Friend – Plan to workout with someone else you live with or video chat a friend
- Schedule Time – Set up calendar notifications to remind you to exercise
- Partial Workouts – Even if you can’t complete a full workout, try and complete a portion
- Reward System – Work out after watching a show and once you complete it, you can watch the next episode
- 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!
Meet Laurel
Laurel Simer came to the 13thirty Cancer Connect Syracuse Center for a special visit earlier this month. Representing the Utica College Women’s Hockey Team, Laurel brought a generous donation raised by auctioning team jerseys as a part of their Gold Ribbon game. Read more about the fund raiser here. She also shared with us a little about her own journey with cancer.
Meet Laurel - AYA Living with Cancer
Laurel's Cancer Journey
Laurel's Visit to 13thirty
DIPG – A Rare Brain Cancer
DIPG is very rare and most people had never heard of it until someone close to them was diagnosed. I think a lot of people hear about cancer and know that its bad. When you can put a face to it and show that this could happen to anyone—your friend, your coworker, your teammate– it makes it personal so it helps people learn about it more and care about it more. Some of my friends have shirts that say “DIPG Warrior Laurel” on them. Some even wear them whenever they travel somewhere, hoping that someone will ask about it so that they can tell my story and tell them about DIPG and help raise awareness that way.
When I was playing at UC, Coach Clausen instilled in us the importance of being involved in our local community and giving back whenever and however we could. This is still a major value of the team today and I’m just so happy that they continue to spread awareness and hold this game each year.
Why 13thirty Cancer Connect
I learned about 13thirty from Charlie Poole and his family. He was also diagnosed with DIPG. I was finally able to meet Charlie and his parents in person in May, 2017 and it was great, they are awesome people. I hate the reason that we met, but I am very grateful that I know them. Although he has since passed away, I feel like Charlie and I shared a lot of the same feelings towards our cancer and being older than most people who get it (The typical age of children diagnosed is 5-10). We both understood the importance of raising awareness and helping out the kids however we could.
13thirty seemed like a place that would be really beneficial for a lot of people. I actually wish that I had had something like it when I was a teenager. Charlie had also come to one of the gold ribbon games a few years ago so I thought this could be a perfect fit.
What inspires hope in you?
I have great friends who have been very supportive of me. Some of my close friends, they know that I still get nervous before a doctor’s appointment, I still worry about what my tests will show, but they are my rock sometimes and they are always there encouraging me when I need it. Just seeing the research that has been done recently– they have learned more in the past 5-10 years than they learned in 20 years before that. I think doctors and researchers are coming a long way, and they are making advances, and it just shows the importance of raising awareness. Because raising awareness and telling your story leads to funding, funding leads to research, and research will eventually lead to a cure.
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.
The Lessons of Cancer
Cat Gawronski teaches us the lessons she learned on her personal journey as an AYA living with 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.
-Cat Gawronski
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
Cat 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.
Opening My Heart After Cancer
Relationships 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. This 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
Paige 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.
Celebrating Life at Journeys!
On November 4, we will gather once again for a celebration of life in honor 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 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!
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
Brittany McNair is one of our 13thirty participants! She is an 11 year cancer survivor, married with a puppy, and a baby on the way!