Tuesday, September 30, 2014

Five Years Cancer Free

2011 Skagit Tulip Festival

On August 14th I had my 13th clean MRI in five years. That day also marked my last appointment and end of my patienthood at Seattle Children's Hospital. It's kind of a funny feeling, like being cut loose from the mothership or something. It feels very similar to when I finished treatment and was no longer going to the hospital for weekly visits. It's kind of like the end of an era or something, the close of a chapter in my life's story.

As I have been walking through the past to tell this story it's almost like I'm writing about a different person, a separate version of myself. I am who I am now because of that person and the experiences I had then. My hopes and dreams and what's important to me now were all shaped by my experiences then.

Throughout high school I would always say "last year" when I was talking about anything from when I was sick.  Since I went away to college that time seems so far away. The new place and separation, I think, allowed me to put it behind me. I may have moved forward, but will always carry with me my experience. It  is what inspires me to want to help others in similar situations. That is why I love working at Camp Korey and with the Sunshine Kids and why I want to become a child life specialist.

Thank you for taking this journey with me. I am glad that I took the time to go through the past and write down my memories because they have already started to blur and fade.

I want to end by sharing with you a poem I wrote while I was on treatment. I have done a lot of writing about cancer starting with my This I Believe essay, then my CaringBridge entries and blog posts as well as many scholarship essays, but this piece has always been my favorite.

Give & Take   

I was the girl with the Curly Hair
Until cancer took it away
Leaving me to Figure out
Who I Truly am

cancer ripped me from my “normal life”
But showed me who  my True Friends are
And introduced me to some New ones too

cancer can give me bad days
But it will Never make me bitter

cancer stuck its big ugly label on me
But I covered it with a Smile

cancer took a year of my life
But it gave me a greater Appreciation for the rest of it

cancer left me weak
But gave me the Strength
to find the Courage
I didn’t know I had

Thank you again for taking this journey with me.

Mischief Managed,

Sammy

Monday, September 29, 2014

I Am Not a Cancer Champion, I Am a Cancer Survivor


I spoke at a fundraiser for cancer research earlier this year and the other survivors and I that spoke were called “cancer champions.” I felt uncomfortable with this term. I had certainly survived cancer and overcome cancer but I never felt like a “champion.”  To me, in order to be a champion there needs to be a competition. Since my cancer, like anyone’s cancer, was made of my own cells, it seems strange to think of myself as a champion in a competition against my own body. This term also made me feel like the most important thing about me was that I had “won” against cancer.

This title reminded of other ways that as a cancer patient I felt idealized or simplified as a person because of my disease; times that my diseased status was put ahead of anything else about me. I know that when someone has cancer or a severe illness it can be hard to know what to say and I do appreciate that people were trying to be supportive, but there are a few things that began to grate on my nerves as a patient.

Something people often say when talking to or about children with cancer is, “You are so brave/ a hero.”
I have mixed feelings about this one. I understand the sentiment and truly appreciate the support. However, these statements always made me feel awkward because I never really felt brave and I definitely wasn’t a hero. I was doing what I had to do to survive. To me this was not an extraordinary choice. It was extraordinary situation, but it was an ordinary choice. I chose to survive; I chose to live.Statements like, “you’re so brave” can make it seem like people with disease never have bad days and that they’re always “heroic,” “strong,” and “positive.” That’s how I felt anyway and it felt very disingenuous.  On my CaringBridge I tried to keep my posts positive. I didn’t want anyone to feel bad for me. If it was a bad day, I didn’t write or I asked my mom to write an update, but I had bad days, plenty of them, and sometimes when things got bad I asked, “why me?” I often felt bad, like I was misleading people or something. (Esther talks about this in the video I included in my blog about her) I was not a heroic pillar of strength and bravery all the time.

Another thing many people said was something along the lines of, “I would never be able to… do treatment… drive to Seattle every day… do what you are doing.”
The only reason I was doing any of that was because if I didn’t I would die. This is typically the choice when it comes to pursuing treatment – do it (despite the horrible side effects) for the chance to live, or don’t do it and possibly die. I know this may sound melodramatic and morbid, but it is a life or death situation. You have to do what you have to do to survive. So, everyone, please give yourself some credit, you probably could do what I did. If you were in my shoes, you would likely do whatever you had to do to survive too.

Also, when I was sick many people changed the way they talked to me. The best way to explain it is to say that people talked to me like a sick person. I was treated with great care as if I was very fragile and would break.  It seemed like people would only see my illness and not see the whole complex person underneath. To me this was exemplified by the change in the way some people greeted me. Instead of saying Hi, how are you?” people would say “Hi, how are you feeling?”
This seems like such a little thing, but it was big to me. I know people were concerned about me and wanted to see if I was doing okay. But, it made me feel like my illness was the only important thing about me to other people. It made me feel somehow reduced and separated from others. This is how you talk to the sick girl and this is how you talk to the normal people, so to speak. Also, I just wanted to talk about something besides my illness all the time.

All of these things built up over time and I appreciate that people were trying to be supportive.  I guess it felt like I was being masked by my illness. Like the cancer girl was all many others saw. To me my cancer status was not the only or most interesting thing about me.

I don’t mean any of this to sound harsh or that I am blaming anyone.  Because of my experience I have worked hard to see people with illnesses and disabilities as whole people and to look past what can be seen on the surface. It is my hope that by sharing my experience I can encourage others to do the same.

Mischief Managed,
Sammy


Sunday, September 28, 2014

Bellinghome

The Run of Hope was today and it was a great event! The preliminary total funds raised for pediatric brain cancer research at Seattle Children's is $360,000 and they are still not done counting!!! Thank you to everyone who supported my team, Sammy's Blobslayers by donating or participating in the event. As a team we raised $2,530!!!

2014 Sammy's Blobslayers 
***
Bellingham, Washington is situated on the shores of Bellingham Bay at the base of Mount Baker; so far north it's almost Canada. Western Washington University resides in Sehome Arboretum overlooking the bay. It is such a beautiful place to live and learn.

Old Main Through the Trees
I absolutely love being at college! I feel like my eyes are open and seeing the world I was blind to before. I have had many incredible and eye-opening classes as well as many amazing professors. I'm looking forward to the next two years as I will be taking all upper division courses from my majors (psychology and sociology). One of the greatest things about college for me is the independence. When I was on and recovering from treatment one of my biggest worries was that I would always be dependent on others. Living in Bellingham for the past two years has shown me that that will definitely not be the case.

I love the city of Bellingham so much! It is the only place I've ever lived where I feel a sense of community. It appeals to my "hippie" nature with its focus on reducing environmental impact as well as promoting small local businesses. I have many favorite places in Bellingham and I thought I'd share here with you guys.

Restaurants:
Mallard ice cream – all their ice cream is homemade and it’s my belief that Mallards is home to the best peppermint ice cream ever.
La Fiamma pizza – potato pesto pizza, you gotta try it!
Boomer' s drive-in – waffle fries and awesome shakes. Much better drive-in than Dick's (sorry Seattleites, but it’s true)

Coffeehouses:
Avelino Coffee – makes their own caramel = best caramel mocha I've ever had
Woods coffee – peppermint bark mocha = best holiday coffee drink (yes it's better than Starbucks)

Bookstores:
Michael's Books – great used bookstore for those who love old book smell (I got to see a first edition copy of To Kill a Mockingbird last week, which was incredible)
View from the boardwalk
Village Books – awesome local bookstore

Places:
Boulevard Park/Taylor Dock – a beautiful boardwalk by the bay overlooking the ocean and
mountains. The most incredible view at sunset on a clear spring or summer evening.

Bellingham Farmer's Market – a very fun Saturday outing

#1 Favorite Place:
Pickford Film Center – A local art house movie theater staffed primarily by volunteers. They show independent movies, documentaries and foreign films, in other words movies you wouldn't see anywhere else. Because I love movies so much, I've always wanted to work at a movie theater. Now I do. For at least two hours a week I volunteer at the Pickford Film Center selling tickets and concessions. It is so fun to work with such great people who love movies as much or more than I do. Plus I get a free movie pass every time I volunteer.

I can't believe college is halfway over already. It has been such a wonderful experience so far I've learned so much and I have made many new friends. I'm really looking forward to what the next year will bring.

Mischief managed,
Sammy


P.S.I moved off campus to an apartment this year, which is very exciting. If you would like my new address please send me an e-mail.

Saturday, September 27, 2014

What Now?

The Run of Hope is TOMORROW!!! That means it's you last chance to donate to support Pediatric Brain Cancer Research!


***
Before I was diagnosed I didn't really know what I wanted to do in the future. I would usually say I wanted to be an aerospace engineer because that's what I decided on in middle school when I learned you can't just apply to NASA to be an astronaut (my life's dream starting around age 3). But, by high school I didn't really want to be an astronaut anymore; it was just something to say.

While I was in the hospital I was introduced to child life specialists, people who are specially trained to help children and families cope with hospitalization. I had never heard of the position before, but I quickly learned how important it is for patients. Child life specialists take care of the social and emotional side of the patient while the doctors and nurses handle the physical and medical side. This way the whole patient is taken care of.

I now know that this is what I want to do with my life. I want to be a child life specialist. I had an incredible team, including several child life specialists, who helped me through treatment and made a tremendous difference in my life. Now I want to work to give back and make a difference in the lives of future kids and their families.

The first step to become a child life specialist is to earn a bachelor's degree. I am now in my junior year at Western Washington University double majoring in psychology and sociology. After I earn my degree, I plan to earn a Master's degree in child life before taking the test to become a certified child life specialist.

Mischief Managed,
Sammy

Friday, September 26, 2014

Senior Year - Class of 2012!

Senior Breakfast
Senior year was really incredible. After having surgery on my foot during the summer, foot and ankle pain was no longer a major limitation. I was able to do more and participate more. A full head of hair and fixed up feet will do a lot to make a girl feel like a "regular kid." I had great classes, teachers, and friends. I was able to participate in the many senior festivities.

In November I was very happy to be accepted to Western Washington University where I planned to study psychology.

Prom was the high point of the year. Although, I'm not a girly girl I have looked forward to prom for a long time – the fancy dress etc. I also wanted to have really long "mermaid hair" that I could put in an up-do. Through the magical talents of Tracy King along with some hair extensions, my up do dream came true. With an awesome blue dress and some bedazzled sneakers I was on my way to the prom of my dreams.

I asked my friend Michael to prom and we went with a group of friends. It was most definitely one of the greatest nights of my life. 
Prom Group
There is one moment, however, that stands above the rest in my return to school. On the last day of school at the senior assembly I was awarded one of the staff scholarships. As I walked to the podium the entire senior section stood and clapped and cheered. I was overwhelmed by the spontaneous display of support. While I had been disappointed by the lack of support from my peers since I returned to school, I was so happy that I got to see it in that moment. This care and support was also shown in the messages written in my senior yearbook. I actually had people asking me if they could sign my yearbook because they wanted me to know how much I inspired them.

Here is what my classmate Sara posted on my Facebook wall after the assembly:
Sammy,
You are an amazing young woman. As I watched you being presented with your award today I looked around the gym and saw the look on everyone's faces... truly incredible. To all that may know you or not, know the positive energy you give off. I feel so blessed to be a part of such a strong class. I can't wait to hear the speech you have prepared for graduation. You are remarkable and I couldn't thank you enough for such a great 4 years. Not only did you help me pass French but inspired me to never give up. You are a fighter. You did it Sammy. We all love you.
-Sara

Graduation
While school was a challenge at the beginning, it only went up from there and got better and better, culminating in an incredible end to my senior year.


I graduated on June 16, 2012 and was chosen by Jackson's staff to give one of the commencement speeches. I was also very fortunate that my Grammie and Grandpa and Aunt Katie were able to come to Washington for my graduation. I also shared my graduation with my friend Pattie and favorite teacher Mrs.Rodriguez.

Mischief Managed,
Sammy

Run of Hope Total: $2,370

There are only TWO DAYS left to contribute to this year's Run of Hope supporting Pediatric Brain Tumor Research


Thank you for your support! Thank you for GOING GOLD!

Thursday, September 25, 2014

The Fault in Our Stars

When I became a nerdfighter in 2008, I read John Green’s books Looking for Alaska and An Abundance of Katherines and loved both of them. I felt he had the best voice of teen characters that I had read in YA fiction. They were full and complex and flawed just like real teenagers. I followed him as he wrote and then released his very successful book Paper Towns and couldn't wait for his next book to be published.

Slowly small bits of information came out about the new book at around the same time that I was finishing treatment. First, that the narrator was a girl, which I thought was awesome. Then he let out that she was a 16-year-old girl with cancer. I couldn't contain my excitement. My favorite author was basically writing a book about me. I anxiously awaited the release and hung on every nugget of information he shared about the book in his videos. In January 2012, the middle of my senior year, the book was released and I devoured it in days. I would sneak it under my desk in class because I just couldn't put it down. I remember sitting in history class tearing up as Gus told Hazel that ... (spoilers).
 
In the book, Hazel says that Peter Van Houten (the fictional author of An Imperial Affliction), "Writes what it's like to be dying without having died himself." That is the very way I feel about John Green and The Fault in Our Stars. He captured so well the experience of being a teenager with cancer without being a teenager with cancer. Hazel, Gus, and Isaac’s experiences and feelings related to their disease completely validated my own thoughts and feelings. They made me feel less alone even though I read the book two and a half years after completing treatment. I wish that I had the book while I was on treatment and felt so alone. I wish I could have shared it with my friends to help them understand my experience.

What I think is most important about the characters in this story is that they are more than their disease. They are complex, multifaceted, flawed people living good lives while also having cancer.

Thank you John for your beautiful book!

Mischief Managed,

Sammy

Because I have friends in the bookstore business I was fortunate enough to be able to meet John (and Hank) on the book tour for The Fault in Our Stars. Thanks, Jessica!


Run of Hope Total: $2,270

There is THREE DAYS left to contribute to this year's Run of Hope supporting Pediatric Brain Tumor Research

Wednesday, September 24, 2014

Back to School

I finished treatment at the beginning of August 2010 and was very excited to go back to school in September. If you know me, you know that I love school. It was really difficult to miss so much.

Back-to-school shopping is one of my favorite things and that year was no exception. I remember having a great time with mom and Megan at Target walking or being pushed (I can't remember) up and down the aisles immersed in the smell of a new paper, pencils, and crayons etc. It was a lovely day.

Although it was very exciting to be starting school again, there was some disappointment mixed in. Despite my school counselor Mrs. Williams’ assurances that I can graduate on time, I was convinced I'd have to stay an extra semester or year.

Decked out the walker for homecoming
When I started back at school I was bald, eyebrowless and needed a walker to make it through the hallways. It was tough just to get through the day at first. Many times I got home and crashed on the couch and into a nap.

While I was glad to be back, school was very different than I expected. I didn't know you could feel so lonely surrounded by 2,000 people. It was as if my walker created a force field around me that other people couldn't penetrate. It seemed as if people didn't see me. People I knew seemed to look right through me or barely acknowledge me even if I said "hi." I don't know if they just didn't know what to say or were scared for some reason. No matter the reason, it hurt. To feel invisible is a horrible thing and that is what I experienced. This taught me the importance of acknowledging others, saying “hi”, or a nod of acknowledgment can make a big difference in how someone feels about their self.

This is not to say that there was no one that acknowledged me and supported me. I had a wonderful group of friends and supporters.

One new friend in particular I couldn't have made it through high school without. While I was on
Brooke & Me on prom night
treatment, Brooke Hereth became friends with Megan, so we heard about each other a lot. We describe meeting in person like meeting a pen pal because it felt like we already knew each other. Brooke was incredibly supportive and remains one of my best friends. She's a great person to talk to and hang out with; she makes me laugh and is a kind and thoughtful friend. I think something that made her such an important friend was that she had not known me before I was sick, so she didn't have someone to compare to as "normal" Sammy. Thank you so much, Brooke for being such a great friend in high school and continuing to be one of my closest friends.

I was depressed and often felt overwhelmed by everything going on from the problems with my leg. to felling isolated, to fears about the future. I have to thank my incredible psychologist Christine for helping me maintain my sanity and figure things. She was another important member of my super-team that helped me get through this experience as well as I have.

One thing that made me feel alone was that in classes, people I knew, friends even, would walk into class, see me, say hi, and walk past. No one ever asked if they could sit by me, or if I wanted to sit by them. I felt like it was always me in my little corner by myself.

This changed senior year when a guy named Sean Hoon that I knew from math class the previous year walked in to AP Lit. There were plenty of empty seats, but when Sean walked into the room he asked if he and his friend Michael could sit by me. Of course, I said yes. It was great getting to know and becoming friends with Sean and Michael throughout the year. This is one of those memories of my experience during and recovering from cancer treatment that sticks out. It was such a small moment, but meant so much to me.

By the end of my first semester back at school, I was doing much better and didn't want to have to stay any extra time. So, I figured out that Mrs. Williams was right all along. I would be able to graduate on time; it would just take a little extra work. I did independent study with the theater teacher, waived PE with physical therapy, and took an English class online over the summer. The rest of my graduation requirements would be met during my senior year.


By the time I graduated, I amassed quite the support team of Jackson High School faculty and staff, including: Mrs. Williams, Mrs. Rodriguez, Mr. Crosby, Mr. Simmons, Mme. Powell, Mme. Grindstaff, Mrs. Carbajal, Ms. Templora, Mr. Trueit, Mrs. Baker, Mrs. Stolzenburg, Ms. Fritz, Mrs. Robertson, Ms. Peterson and Mrs. Moffat.

Mrs. Williams, Megan & Me
My JHS team at the 2011 Run of Hope
Mischief Managed,
Sammy

Run of Hope Total: $2,170

There is only one week left to contribute to this year's Run of Hope supporting Pediatric Brain Tumor Research