Cancer – The Stories Between

Cancerversary

Editor’s Note: We are always amazed at the resilience and positive approach that so many families living with cancer are able to adopt. How a potentially fatal diagnosis can be turned into a Silver Lining in their life and one they end up being grateful to have endured. We feel these stories can serve as inspiration no matter what your struggle might be.

Today is the cancerversary. Four years ago today the doctors came to Sophia’s hospital room to check in with us. We were waiting for their visit. Sophia had been brought in the night before, the cause of her illness yet to be determined. We were prepared to hear that she’d had a reaction to medication she’d been taking a few weeks earlier. Nothing prepared us for what was said next, “Why don’t you come with us to the conference room.” We were told Sophia had acute lymphoblastic leukemia and that she would begin treatment right away. It was a lot to take in and honestly the first week was a bit of a blur. What I do remember very clearly was the love and support we received – it seemed as if each day brought a new blessing.

Our friends and family went into overdrive. My sister was by my side every day with soy lattes, bistro boxes and laughs. Sophia was showered with gifts from family, friends and people we didn’t even know. Her name was added to prayer lists in Catholic, Episcopal, Methodist, Lutheran, Jewish and non-denominational churches and synagogues. The support truly helped us get through the difficult times.

They say a family trauma has the potential to break a family apart. Sophia’s cancer had the opposite effect on us. The five of us became even closer. Our time together became incredibly important. We adopted mindfulness as a way of being in the moment and cherishing each other. Even today, we try to have dinner together every single night, working around sports schedules. Some nights it’s diner at 4:30, some nights it’s 7:30. But we sit together in gratitude and share the best or funniest thing that happened to us that day.

For a while, we would categorize our lives as BC (before cancer) and AD (after diagnosis) as if we had lived two very different lifetimes. The first being a time of innocence and joy, the second being reality. Remembering an event or date we’d say, “That was about one month BC” or “That must have been about 3 months AD judging by her hair.” We don’t do much of that anymore. The whole cancer diagnosis seems to have been woven into our family timeline so tightly that there no longer seems to be a before and after – only a continuing story.

I love our story and I’m fairly certain each one of us, even Sophia, would agree- we wouldn’t change a thing. On this fourth cancerversary, we will celebrate our many blessings, grateful for each other and all those that are a part of our lives. There may also be some ice cream involved.

Jane McCaul is an Area General Manager for Chesapeake Hospitality. She manages two Baltimore-area Hackerman-Patz Houses which accommodate patients and family members of patients undergoing treatment at local hospitals. Jane lives in Baltimore with her husband John, their 3 children Christina, Jack and Sophia and their dog Ginger. After 3 1/2 years of treatment Sophia will be entering middle school in the fall – happy and healthy. She is very active participating in sports year-round (field hockey, basketball and lacrosse) but her favorite activity of all is playing in the ocean. She recently got a new surf board that she can’t wait to try!

Back From Vacation, Back To Work

Below is a reprinted blog post penned by Kylee Webster in July of 2013 on her blog, The Dancing Queen. Over the next few weeks we will be reprinting her posts to highlight the resilience and positive spirit of those facing even the most devastating of life’s challenges.

We all know that feeling that we get when we return home from a LONG, RELAXING, and fun-filled vacation and we realize that the vacation is over and the next day we have to go back to work. For most of us, this is never a good feeling. Well today I myself return to work after my own four month, fun-filled vacation. Type of work: cancer patient. Place of employment: infusion center at a hospital.

I last finished cancer treatment in the beginning of February 2013. Shortly after, I met with my medical oncologist in the beginning of March 2013 for a CT scan to check and see if the operation and treatment had worked. Well it did! On March 1, 2013 I was told that there was No Evidence of Disease in my body and my oncologist told me that he would not have to see me again for three months for a repeat CT scan. Three months?! What was I supposed to do with myself for three whole months with no treatment, no surgeries, and no doctors appointments to go too.

It took a few days for the good news to settle in. I was in shock. After all of these months, I was finally cancer free and I was going to get a vacation from cancer. After the initial shock began to wear off, I began planning. Planning trips with my family and friends. Making up for the time lost when the cancer was controlling my life.

And traveling I did!! I lived life like a gypsy and I loved every second of it. I will be honest. My cancer was always in the back of my mind. I thought about it everyday. But I only allowed it for just a short second or minute. And then I would stop myself before it consumed me. Because if I didn’t stop the thoughts, that meant the cancer was still winning and ain’t nobody got time for that!

After many weeks of living life to its fullest, my three month appointment check-up seemed to be here in the blink of an eye. On June 7, 2013, four words changed everything…”The cancer is back.” Back in my lungs. And back with a vengeance. After a few expressed profanities and a few tears shed from myself, I then looked at my oncologist and said, “Ok. What’s the plan?” Which brings me to today. I will be starting a clinical trial that will hopefully include the miracle cocktail that stabilizes, shrinks, or kills this cancer. So today I rejoin my battle against sarcoma cancer.

But let me be clear. Cancer does not define me. I am a daughter, a sister, an aunt/godmother, a granddaughter, a niece, a cousin, and a friend. These are the roles that most importantly define me. But if I am going to be honest with both myself and with all of you, I must include another role in my life…cancer survivor.

Yes I am a cancer fighter, but I am also a cancer survivor. I remember when I was first diagnosed with cancer I met a fellow cancer survivor and she told me that you are a considered a cancer survivor on the day that you are
diagnosed. So today I will fight, but I will also survive!

Kylee Webster was born on May 15, 1979. Passionate about helping others, Kylee earned both bachelor and master’s degrees in psychology from Towson University, and went on to pursue a career as a drug addiction counselor in Harford County, with focus on adolescent therapies.

Kylee was diagnosed with sarcoma in September 2011. She underwent more than 15 rounds of chemotherapy, more than 30 rounds of radiation and several major surgeries. Throughout her treatment, she amazed every person who knew her or met her. She was brave. She was courageous. She kept a smile on her face and never let her fighting spirit and attitude waver. She began documenting her journey with a blog titled “My Dance Through Cancer” and showed the world that in addition to all of her other talents, she was a fine writer too.

After battling her disease for over two years, Kylee earned her angel wings in October 2013. Kylee’s Dancing Angels was established to give something special to sarcoma patients, while keeping Kylee’s memory and spirit alive.

For more information on Kylee’s life and her Foundation and to donate to their upcoming Fundraiser: Kylee’s Dancing Angels website, Kylee’s Dancing Angels Facebook page, Kylee Webster’s Stories Between page.

Keep Calm and Stop Worrying

Many people know that my daughter, Juliana, has been fighting cancer since 2007. She beat it then the cancer came back in March 2011 and, again, in June 2012. She has been on two kinds of maintenance chemotherapy for months. She had some pain in her chest and leg. Just recently, we noticed her right eye began to droop. We knew something was wrong.

On Monday March 17, 2014 we took her to Sinai Hospital. The following day we found out that a cancerous tumor was wrapped around two muscles in her right eye. Surgery was scheduled for the following day.

I couldn’t believe it. The cancer attacked my baby girl for the fourth time. For days, I felt like I couldn’t move. I felt like I had a five hundred pound weight holding me down. I couldn’t even do my daily radio show. I sobbed. Once Juliana was released from the hospital my wife and I came up to our bedroom to talk and I held her as she sobbed in my arms. Not again…not cancer…again?!?!

A few days later, Juliana emailed me a little poster that said, “Keep calm and Stop Worrying.” What? Keep calm and stop worrying? Certainly, Juliana doesn’t know the severity of her situation as the doctors said there is no long term cure for her. Still, this little champion was encouraging her panic-stricken father who doesn’t want to lose his little girl to this horrible disease.

What do you do when you don’t know what to do? The easy answer is to take control over your thoughts. Is that easy? No way is it easy! By March 21, 2014 I was able to pick myself up but not until I did something that has worked in the past. I started contacting thousands of people to pray for Juliana and our family. There are some struggles that you cannot afford to carry alone. This is one of them for our family.

When you leverage what you cannot do alone with the power and strength of others the load that you’re under gets a little lighter. Too often, I have found, people do not want to reach out and say, “I need help!” This is a huge mistake! I don’t know of anyone who is wired to handle all of life’s struggles. Allowing other people to help gives people a chance to make a difference in your life.

Thousands of years ago the Biblical character Moses was in charge of a great battle. He was so tired. He was losing strength very quickly. Two of his friends, Aaron and Hur, stood beside him to encourage him and to strengthen him. Everybody needs “Aarons and Hurs” in their life.

Author Mary E. DeMuth writes, “We grow when the walls press in. We grow when life steals our control. We grow in darkness.” There are some people who have a “calling” to be such encouragers. Statistics tell me that about thirty to forty percent of the public are encouragers. They are everywhere but you will never know it until you have the courage to open up your heart to people worthy of your trust.

Author Jon Walden said, “Struggle is proof that you haven’t been conquered, that you refuse to surrender, that victory is still possible, and that you’re growing.”
You don’t have to carry your struggles alone. Please pray for Juliana Carver.
“I Believe in you!” ®

John Carver was born in Baltimore Maryland and now lives in Carroll County Maryland. John married Tammy in 1988 and after nine years of infertility began adopting children from Russia and Belarus. Today, they have six children. Their youngest daughter, Juliana, has been fighting cancer since 2007. John inspires several thousand people each week using several online tools. To sign up for his weekly email, email him at johncarver@wildblue.net or check out his website, www.johnwcarver.com

Golden Honey, Silver Lining

In 2008, my garden was decimated by a small twister that took out over 30 trees. One of the trees, a stately black walnut, was home to a colony of feral bees. The trunk had been ripped in to several pieces, and the intricately constructed combs were in disarray. A beekeeping friend, Jon, attempted to rescue the colony, with the intention of hiving it somewhere on the property. His best efforts to find the queen and move her with her courtiers were thwarted: it appears she died on impact leaving the colony to dwindle and, already weakened, to die. Unable to save the colony, Jon removed big clumps of comb and our children sat around the increasingly sticky kitchen table squeezing pounds of oozing honey into a bowl. We bottled the honey and it is the best I have ever tasted.

This brush with bees inspired me to become a beekeeper myself. It was not a straightforward path: first, the night course I was to take was cancelled, another to be offered in the spring. When spring came I could not take the course as I was a little preoccupied with a very sick son, Gregory, being treated at Johns Hopkins for Stage IV Lymphoma. Eventually, however, Gregory made a recovery and returned to school.

Another spring came round, and the bee keeping course was offered again: I signed up immediately. Coincidentally, my children’s third grade teacher, Rosie, took the course too. She had been Gregory’s teacher when he became sick, and took a particular interest in his sister, Alessandra, when she joined her class a couple of years later. She has an excitement and enthusiasm that is almost childlike, certainly infectious and, on April 19th, 2015 Rosie and I successfully hived our very own colony of bees, and have tended our “girls” this year with increasing fascination and affection for these extraordinary creatures. In addition to co-parenting several thousand 6 legged delights, we have become fast friends, working together more and more smoothly as we open up the bee hive, examine each frame of comb for eggs, pollen and honey.

Rosie’s family has health challenges of its own, and we can speak to each other about our experiences in a kind of shorthand, a waggle dance of sorts. Having that implicit understanding of each others day to day difficulties, the exhaustion of continuing to function with as much grace and gratitude as can be mustered, having that inner knowledge, it takes the weight off our shoulders, if only for an hour or so. Having borne witness to how painful, frightening and fragile life can be ensures that Rosie and I are not great dwellers on the unhappy and we both tend to look for the joy in life, even on days when it is particularly elusive.

This beekeeping business helps us in that endeavor, watching these industrious, collaborative insects drawing out their beautiful comb, hexagon by hexagon, filling it with pink, yellow, even blue-ish pollen, storing honey to nourish the tribe in the depths of winter, keeping house, spic and span, each with a defined job to do, carried out efficiently, coherently, elegantly. I find myself talking to my bees when I am near their hive, or if they are working next to me in the garden foraging for nectar and pollen, their legs and abdomens liberally dusted with the good stuff. When we break open the hive and disturb their good offices, they fly up and around us and it is not fearful, but provokes a feeling of great warmth as we are enveloped in their thrumming cloud.

As Rosie and I continue our journey of care for family members with a chronic illness, on an often bumpy and rocky road with unexpected twists and turns, we have found a happy place, one we occupy together in empathetic companionship, striving to find the good, the pure, and the joy in life with our girls, our bees.

Laura Leach was born in England but currently lives in Baltimore. She is a horticulturist, a fundraiser, and freelance writer. She is married to Paul and is blessed with two children, Gregory, now 13, and Alessandra who is 10.

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.

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.”

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.