January 2016 – The Stories Between

Cancer: Turning Adversity into Opportunity

By the time I was 16 I was a two-time cancer survivor. And I have been surprised to find that it is possible to benefit from the cancer experience.

I count myself very lucky to have lived through experiences and challenges that most of my peers cannot imagine. I have become a passionate writer and advocate for young people living through cancer treatment or cancer survivorship. Through my writing, I have chosen to be a proponent of positive attitudes and try to encourage my readers to stay positive in the midst of some very negative times.

In doing so, I have learned a lot about cancer – both my own experiences and the impact cancer can have on others. For me, I am grateful for the lessons-learned, friends made, and dreams realized thanks to those two bouts of cancer. Although it can be hard to understand this gratitude when going through it, I have come to find that cancer can impact your life in just as many positive ways as negative ones.

In my own case, there are several things that have happened in my life – several very good things – that I don’t know if I would have experienced had it not been for cancer. For starters, my cancer treatment as a toddler sparked in me a lifelong passion for helping others, and that passion that provided me with direction during the early teenage years in which many young people feel most directionless.

My cancer relapsed at 13 and, while it stole 3 years of my adolescence from me, it gave me much more. That relapse treatment provided me with a family of doctors and nurses who showed me the meaning of hope, the value of dedication to one’s work, and the wonderful impact one can have on the lives of others when you choose a career about which you are passionate. I then had the opportunity to be an honorary team captain at the Leukemia and Lymphoma Society’s Fall Ball Lacrosse Tournament. I was assigned as the honorary team captain for the Duke University women’s lacrosse team. Although I couldn’t come to the game itself, the team sent me a beautiful and thoughtful care package. When I later went to look at colleges, Duke was at the top of my list because I wanted to find a school like that where students were involved in on-campus activities that could benefit people in and around the community. No less than 5 years after that lacrosse tournament, I received my letter of acceptance from Duke University and will be graduating with honors in May.

Shortly after the LLS lacrosse tournament, I took the opportunity to share my cancer treatment journey at a fundraiser for the hospital at which I was treated. This led to 30 subsequent speaking engagements that allowed me to become a practiced public speaker and give back to hospitals and organizations dedicated to helping children with cancer. At the same time, being out of school because of my treatment led me to realize the unique needs teenagers with cancer have, and the lack of age-specific social and emotional support that they so justly deserve. That realization led me to take an independent research class in high school to research the psychology of teen oncology, a project that led me to writing my blog and eventually publishing my book for teenage and young adult cancer patients and survivors.

Writing my blog and my book allowed me to process my cancer treatment experience and deepened my passion and interest in psychology – specifically in research into and development of social support interventions for adolescents with chronic illness, to help improve their quality of life. In following that interest, I hope to pursue a PhD in pediatric health psychology and work with children, adolescents, and young adults who have cancer or other chronic illnesses.

Long story short, you can take a challenge like cancer and turn it into one or many opportunities. By maintaining a positive attitude and open mind, think about your future and use the challenging experience as leverage to achieve goals that can help to make your future the best it can be.

Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, when her cancer relapsed. So, she went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-one years old and a senior at Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. It is her goal to become a clinical psychologist after she graduates from Duke, and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. You can read more about Clarissa on her website and blog at www.teen-cancer.com. To order a copy of her book, Riding the Cancer Coaster, click here.

Don’t Let Their Beliefs Hold You Down

Like many women, my mom has been the biggest influence in shaping me to be who I am today. However, I can trace back a defining moment in my life to one particular piece of advice she gave me during a pivotal time of my childhood.

Nicole Mom and Ty — Emme Sherry with her grandson, Tyson.

I have two older brothers with one being just 18 months older so naturally I wanted to do everything that he was doing. When he would play baseball I would tag along and the boys let me play but really I was more of the person who would fetch their bat or a ball that went out of bounds. He would say, “You’re too little to do that or you’re not allowed to play on that team yet, or you’re a girl you need to play softball not baseball.”

Because I kept being told that I could not do something I was determined to not only do everything he did but set my goals to do it better. I learned how to ride a bike quicker than he did and I excelled in sports faster as well. I didn’t fully understand the little league aspect of it all and girls having to play softball. After all, up to that year boys and girls played on the same t-ball team but then the next season the boys move on and play baseball and the girls have to wait another full year until the girls’ softball league begins for them.

Fortunately, my dad didn’t want me to sit out a year so he somehow finagled a way to get me in the boy’s league when I was 8 years old. In hindsight, playing in the boy’s league made me even more determined. I remember having the grit about me to tell myself that I can beat these boys, that I was better than them, that I could compete just as well as they did.

It became clear that other parents had more of an issue with a girl on the boy’s team than my peers did. I never knew there was a gender situation until that year. I could not understand why the adults in the stands and friends on opposing teams were now mean to me and laughing at and taunting me.

I finally confided in my mom and she replied, “Nicole, some people are always going to find a way to hold you down by words or by actions. Just know that you can do anything a boy can do and sometimes you will do it better.” And in my life, that single sentence became the foundation for my future career and life path.

Because of my mom’s encouragement, I went on to study agriculture, more specifically Turfgrass management, a clearly male dominant field. Throughout my years I have come across most of the same mentalities of people as those parents in the stands or the boys in my neighborhood. I heard, “you can’t do that, that’s a job for a man or maybe you should try another line of work because you’re too pretty to do that job. Or how about you work with flowers or landscaping.”

But with my mom’s words always in my mind, I stayed the course of my passion and am now currently one of ten women with the title of head groundskeeper and one of only two women with the title in Major League Baseball. And I owe all of that to my mom.

Nicole Sherry McFadyen has been the Head Groundskeeper for the Baltimore Orioles for 10 years. She graduated from the University of Delaware with a degree in Agriculture. Before the Orioles she worked as Head Groundskeeper for the Trenton Thunder. She lives in Baltimore with her husband Dan and their son Tyson.

I Need You To Know That You Never Stop Grieving

My sister Kylee passed away on October 11, 2013, after a two year battle with a rare form of cancer called Sarcoma. I am reminded of my loss every day through simple things such as a photo or going to a place Kylee liked or when my son, Aiden, randomly asks about her, which he often does.

Kylee and Allan — Kylee Webster with her brother, Allan, in September 2013, a month before she earned her Angel Wings.

I have learned to accept that I am grieving but I won’t let it put me in a hole that I cannot get out of. I’ve learned to embrace the sadness when I can and to get a good cry out when I need it but I also make sure to build off of the loss I have experienced and the things Kylee went through during her journey to help others in whatever way I can.

One of my best friends lost his older and only brother to a heart attack in his early 40’s. It came out of nowhere. He passed just prior to my sister Kylee being diagnosed. When he passed, I told my friend, “I understand what you’re going through.” But then I lost my sister and realized I really had no idea. I think this is the tough part for people when they talk to someone who has gone through a loss.

If you haven’t been through it, there is no true way to understand. You can be there for the person but the reality is that you almost become a member of a special club. It’s a sad club that you don’t sign up for but instead just suddenly find yourself in. Nothing makes you feel better as much as talking to someone who has also gone through it. You have this automatic bond that just feels right. They understand you and you understand them.

What has become so important to me in grieving is that I try to help people understand that nothing truly matters except your health and your day to day happiness. Losing my sister has taught me that. I try to explain to my close friends that I have been given the gift of this bizarre “wisdom” about really understanding what is important. Kylee, through her passing, has taught me this.

And people admit all the time they don’t know what to do or say to someone who has lost a loved one, especially due to a disease or sudden, tragic event. Losing your only sibling at such a young, vibrant age was and is a tragedy. It’s really the simple things a person can say that matter. Simply, “I’m so sorry, I cannot imagine what you are going through nor do I understand but I am here for you if you need anything.” Reach out to them randomly and let them know you are thinking about them. So simple but it all helps so much.

Me personally, I like to talk about Kylee. Some people don’t like to talk because it is just too much to handle emotionally. It helps me when friends want to talk about Kylee and share funny stories because that helps her live on through me. I always like when people say, “Remember that time…” and we laugh while remembering. A good belly laugh really is the best medicine.

The biggest fear for a person grieving is that people will “forget.” I never want anyone to forget who and what Kylee was and still is. An example of happiness and strength. So never be afraid to “check in” with the grieving person. Everyone knows that holidays and birthdays are tough, but sometimes just the random day is hardest. Those are the days that I love when I get a call just to chat about whatever and know that people are thinking about me and Kylee.

The worst thing people can say is “she is in a better place.” Seeing Kylee struggle we knew her physical body could do no more but she still would have preferred to be “Here” no matter how difficult her days were. She took oral chemo up until the last day even when the doctors told her it was doing more harm than good. She wanted to be here and we wanted that too. People mean well but words like that sting. The same with “I can’t believe she is gone.” To all of us, her physical form may not be present but we know she is still here.

kylee and aiden — Kylee and her nephew, Aiden, just before diagnosis in 2011.

It is also hard for grieving people to hear others complain. I know it’s human nature and I certainly catch myself doing it, but it’s hard to hear someone say, “I just don’t want to go to work,” or “Ugh, I don’t feel like doing this or that.” It reminds me that Kylee would have done anything to stay here and she endured so many terrible things and still never complained. She always smiled and was in her “happy place” every day. I still draw so much from the strength and happiness she gave to others even when sick. I’ve learned to tune out the complaining and feel this is another gift Kylee has given me.

To honor Kylee, I try to teach people to just enjoy every day, in whatever small way you can. Life is precious, try not to let small things bog you down. I like nice things like everyone else, but I try to put the attention on helping people in Kylee’s name and relishing in little things like playing with my son. You can always make money but you cannot always make memories. Creating her foundation, Kylee’s Dancing Angels, helps me and my Mom and Dad keep Kylee here with us by assisting other with Sarcoma and I know it makes her proud. I truly believe she is here with me daily and at times she even shows me.

Last year, I was invited by Johns Hopkins Hospital to speak at their Night of Remembrance to other families who had lost someone to cancer. It was one of the toughest things I have ever done but when I finished talking about Kylee I felt so good inside. And people came up to me and said Kylee sounded like such a wonderful person, or she reminds them of their loved one, etc. It was wonderful.
I will always grieve my loss but I will continue to honor Kylee through my actions and remembering and celebrating her strong and happy spirit.

For more information on Kylee’s life and her Foundation: Kylee’s Dancing Angels website, Kylee’s Dancing Angels Facebook page, Kylee Webster’s Stories Between page

Allan Webster is an Assistant’s State Attorney for Baltimore County, MD. He writes, “Kylee Brooke Webster is my only sibling. She passed away at age 34 and was 7 years younger than me. To say Kylee and I were close is the understatement of the year. We were not only brother and sister but best friends. Our family created Kylee’s Dancing Angels in her honor to help other Sarcoma fighters get to their “happy place” just as Kylee strived to do every day during her journey with Sarcoma. I am so blessed to have a sister that was loved by so many. She was one of a kind.”

But I’m Not Ready Yet…

It began with some unanswered emails. My 82-year-old uncle, Peter, was moving to a new apartment in a senior living facility. We were the only family members living on the West Coast and we kept in touch at least monthly. We had spoken of meeting for lunch that month and it was my turn to treat him at his favorite downtown restaurant, Southpark. I emailed and followed up with email, but didn’t call because I didn’t have his new number. All I could figure was he didn’t have his computer set up at his new place. I should have known that this was not like him but it really never occurred to me that he was having trouble getting settled – he was so capable, among the smartest people I’ve ever known: educated at MIT and owner of a Manhattan architectural firm.

When I finally did get in touch with him another month later, Peter didn’t want to go to Southpark. He wanted to stay close to his new apartment, to eat in the senior living facility restaurant and show me the layout of the whole building. Okay, this seemed reasonable but left me feeling a little uneasy. He seemed so tired – he needed to rest as he walked me around the facility. He was a little disheveled, too. Still, I chalked it up to the move – obviously exhausting to someone in his 80’s.

It’s amazing the allowances we will make in our mind when we don’t want to face reality or the inevitable.

Throughout January I didn’t hear from my uncle. Somewhat unusual but I knew there were so many activities at the senior living facility that he could be getting involved in. It wasn’t until early February when my father and cousin started raising alarms and asking around if anyone else noticed how much Peter was repeating himself during phone conversations. I went to visit him immediately.

peter wedding day — Peter and Patricia Paul on their wedding day, December 3, 1955.

His tiny studio apartment was in desperate need of cleaning and tidying – though this was not especially different from his other apartments. He always had lots of projects in progress and spread out as he worked on them. But he still seemed so tired as if he would not have the energy to clean if he wanted to. I was far more alarmed by the idea that he might also not be cooking for himself. If he didn’t have the energy to clean he probably didn’t have the energy to fix meals either.
He said he couldn’t get his email to work, or his TV or his garbage disposal. When I told him I would contact facility maintenance, he said he didn’t want to bother them and that they had already tried and some other confusing statements that when I look back I realize were his efforts to hide his own confusion and failing capacity. Looking back I should have seen how much the dementia was already setting in. But I just couldn’t imagine that this brilliant man couldn’t suddenly figure out how to turn on a garbage disposal. I simply took the situation as a very proud man who did not want to have to ask for or receive help.

The next time I went to visit him two weeks later, I got to his apartment and the front desk informed me he had been taken that morning to the hospital – he had fallen and he was “confused.”

I rushed to the hospital and spent four hours there as he waited for and was seen by doctors. Even though he knew who I was, it was about the only thing he knew that was correct. He couldn’t tell me how he had fallen or how he had gotten to the hospital or how long he’d been there. When the doctors examined him he told them the year was 1932. As they asked him other questions about his life and basic facts – all answers he got wrong – I felt an inner panic rising. A disbelief that this could be happening. I had to bite my tongue to not help him answer simple questions about how many children he had. The doctor had to rely on me to verify the truth of his answers about our family. I felt like such a traitor when I had to tell the doctors when he was incorrect about something – as if I was being disrespectful to my uncle.

This played out several more times over the next two months as new doctors saw Peter and each time he was admitted to the hospital. Each time I silently coached his answers in my head. Each time I cringed at every wrong answer – the year, the city we lived in, the names of his children. Each time I felt compelled to defend my uncle with each doctor, telling them how educated and accomplished he was. More than one doctor assured me that they could tell that he must have been very intelligent because he was very good at trying to hide his rapidly progressing dementia – and he probably had been hiding it for a while.

This is when I looked back and realized how many signs I should have seen but just couldn’t make that leap from brilliant man to elderly uncle in need of help as he grew more and more confused. There was only so much the doctors could explain; much was not known about the whys and how longs and especially the how much longer. But his failing mental capacities and inability to take care of himself (for how long??) definitely impacted his physical health – further complicated by a long-standing heart problem that required medication.

Peter Paul photographed in 2003 by his daughter, Suzanne Sease.

Once hospice nursing care had been established at a new room in the medical wing of the senior living facility, all that was left for me to do was visit my uncle as often as I could, to make sure he was receiving care, to bring him my familiar face, to talk to him and to bring him the love of all the family. His children had all visited but had gone back to their homes – of course because we didn’t know how long he had. His heart issue was stabilized and he was receiving excellent nursing care. I settled in to a schedule of visiting during my lunch hour at work and often on Sundays. I got to know the nurses. They also called me if anything happened – like a fall – just to report in. I didn’t realize until later how much this stage of waiting and watching kept me on edge. There was never good news, only a progressively worse status to get used to.

Those two and half months went so fast – and yet in slow motion. I barely got the chance to acknowledge to myself that this was a reality I was going to have to accept. I never got a chance to get used to the fact that we wouldn’t be meeting up for lunch ever again. (It was still my turn to treat him at Southpark.) We wouldn’t be discussing books and politics any more. (And this upcoming election would have been hours of entertaining discussions). He and I would never go to the ballet again. I never had the chance to go to the symphony with him like he had wanted.

He grew more tired and less interested and less there with each visit. On the last day I saw him, he was more alert than he had been. We had one last meaningful conversation that I will always hold precious in my memories.

I was going to visit him just a few days later on that Sunday. Saturday morning I had such a strong urge to somehow find childcare so I could visit him that day. But I didn’t. By that afternoon hospice called to tell me he had passed away suddenly. And there it was – the end.

Suddenly, slowly over many months, trying to prepare for the inevitable, totally shocked by the news. A blur of well-wishers and sympathy. And paperwork and protocol. And sitting with his body as we waited for the young men from the mortuary. The young night nurse who asked for a moment to say good-bye, genuine grief. Everyone so courteous and professional. One last visit to the senior center’s chapel (on the altar a cross, a menorah, a Buddha statue – and my favorite – a Gerbera daisy in a coffee cup). One last look out at the night-time view from the seventh floor of the senior center of our shared West Coast city. I am still missing my uncle, my friend.

To read more about Peter Paul you can visit his Stories Between tribute page here.

Amy Paul is a West Coast transplant who grew up in Baltimore but settled in Portland, Oregon, after a cross-country adventure with her now husband, Jason. She earned her Master’s Degree in English and is a marketing manager for a large commercial contractor – a career that keeps her connected to the “built environment” community to which her Uncle Peter introduced her. Amy and Jason have two sons, Gus and Rex.

Thank you is never enough

Time is a funny thing. Looking forward six years seems crazy – I’ll be almost 27 which seems like foreign territory to me right now. But looking back six years I remember clearly. One day I came home from school to find my mom waiting for me, and then hugging me as I read an email that my friend Amanda Post had passed away. I was only close with Amanda for about two years, but in that time, I think she changed my life more than any other single person besides my parents.

Amanda opened up a whole new world for me when she introduced me to camp. All throughout my treatment, I refused to go even though the nurses encouraged me every year. Amanda insisted I go with her and I had a blast. I couldn’t believe what I’d been missing! It was hard to go back without her, but I know that’s what she would have wanted and now I’m involved as staff in three cancer-related camps.

I’ve had so much fun, both as a camper and as staff, and every year I thank Amanda for leading me to such great people and I will keep going back to give the other kids the same great experience we had. Amanda (and everyone else at camp) helped me see that I was not alone in my fight and that beating cancer was something to be proud of, not something to hide. We would email each other comparing medications and side effects, something I couldn’t do with any of my other friends. She was great at pointing out random perks of treatment, like not having to shave and getting to eat anything, that I had ignored. She made the best of everything, decorating her hospital room, getting a pink Christmas tree when she couldn’t have a real one, and anything else she could think of. She made friends with the other patients and nurses, while I used to hide from everyone. Treatment is yucky, but she made it as fun as possible.

Six years ago, I was shocked. It seemed unreal and impossible. I had been reading her mom’s updates and I knew she had some complications after her transplant but I wasn’t familiar enough with GvHD at the time to really understand how serious it was. I knew she was a fighter and I never doubted that she would get through it all. This email came out of nowhere and I was devastated. I spent the rest of the afternoon reminiscing – crying, laughing and everything in between – with some of my close friends who were also friends with Amanda.

I remember sitting in US History the next day, a small cluster of orange shirts (the leukemia color) on one side of the room. We had gone to middle school with Amanda but many of our classmates had not so they didn’t know what had happened. Our history class was listening to songs related to whatever time period we were covering. They were fine until one was about people dying, and that was just too much to take. A few of us walked out and spent the rest of the period crying in the bathroom.

Most of us, myself included, had lost relatives before, but we had never lost a friend, someone our own age. We had never thought about all of the things someone wouldn’t get the chance to do – learn to drive, go to prom, graduate, go to college, start a family. It was an eye-opening experience to realize how fragile life is, not just when you’re old but even at age 15. That’s a lesson I know I will never forget.

There really aren’t words to describe how thankful I am that I was friends with Amanda for those two years. My positive attitude has gotten me so much further in life than my old attitude would have. Embracing my experiences rather than being ashamed of everything has opened up some great opportunities and I’ve met some of my best friends at camp. I’m so lucky that Amanda dragged me into this whole new world and I know I’m not the only one whose life was changed for the better by Amanda in her 15 years. “In the end, it’s not the years in your life that count. It’s the life in your years.”

Karen Shollenberger grew up in Maryland and is currently a junior at Drexel University studying science communication. In her free time, Karen can be found eating chips and salsa, hanging out with friends and family, or volunteering. She’s always up for good food and random adventures and is more than halfway to her goal of visiting all 50 states. Karen is a four-time leukemia survivor and enjoys sharing her experiences through her blog, The Worst Best Thing: theworstbestthing.weebly.com/blog.

Originally published May 17, 2015 on The Worst Best Thing and reposted with permission.

Welcome to The Stories Between Blog

Welcome to The Stories Between blog! We are so excited to kick off this new feature of our tribute website. The Stories Between believes that everyone has a story and that everyone deserves to be heard. Our goal is to give everyone a platform to share those stories and perspectives.

Our blog is devoted to celebrating and reflecting on life, its challenges, regrets, successes, and failures. Because even though we are all different, the experiences of life can be universal. However, we don’t focus on the negative and unfairness of life. We are here to celebrate life and the rollercoaster challenges and successes it hands us.

We strive to connect people through shared stories and shared experiences. It’s tough and emotional, often downright painful, to share real, candid thoughts. But for those brave enough to do so your voice becomes invaluable to so many others. What you have to say will resonate and will make a difference.

So this blog will be primarily written by you, our readers! You have the life experience and we want you to share it. While our Stories Between tribute pages will still invite people to honor and archive their loved ones, our blog will explore so many more topics and themes. We have created a few to get started but we also know this will be ever evolving, just like you.

1. Ordinary Influencers: How Ordinary People Have Helped Shape Extraordinary Lives – Readers reveal and honor that person or moment who had a profound impact on the path of their lives. Just answer the question – Who or what had the greatest impact on the path of your life. Don’t overthink it, most likely someone or event has already popped into your head. Now write about that and how it has altered your life and put you where you are now.

2. Hindsight – That single greatest challenge, regret, success or failure. We gather thoughts and reflections in an effort to learn from the past experience and wisdom of each other. This can be about you or go ahead and talk to someone much older and wiser and gather their insight to share with us. This feature may at times be written in third person as the result of an interview done with someone else especially an elderly person. We love what they have to say!

3. Silver Linings – You hear it all the time, people talking about an illness, challenge or loss but instead of complaining or feeling sorry for themselves, they are talking about the positive light it brought into their life. They have been able to see the silver lining shining through an otherwise overwhelming and defeating time. Our Silver Linings articles celebrate and highlight that positive outlook. Tell us about your life altering experience and the good that came through it.

4. Letters to our Loved Ones – Working through grief is a long and arduous process but remembering and honoring is vital to healing. In Letters to our Loved Ones we hear from individuals as they talk to important people who are no longer in their lives.

5. Celebrating Life – Resources and articles that highlight unique and creative ways to remember and celebrate the lives of loved ones.

6. Memories – Our writers reflect on their favorite memories, how these memories continue to impact them and how they continue to honor loved ones through traditions and stories.

7. Grief – Personal accounts of how our readers have worked through their grief or continue to do so. First hand stories of how loss has affected them and ways they have learned to cope. These articles offer insight into issues like time, what to say or do and what not to say or do.

8. Circling Back: Revisiting People and Places from Our Past– This series will be written by Val Walker, author of The Art of Comforting and a leading expert in empathy and “being there.” She will be exploring and reporting on the benefits of revisiting our past.

We would love to hear your stories and celebrate life along with you! If you would like to contribute just hit the submit a story link or to learn more check out our Submission Guidelines (which is a lot of this same info).

Either way, we look forward to sharing our collective thoughts and stories with you!