Just Another Day

This is what an average day was like throughout my year on treatment.

I woke up at 6: 30 or so and Brandon would help me get set up for the day. He’d make me a bagel thin with strawberry cream cheese before getting on the bus to school. Then I’d doze off a little while watching the Today show. (I especially like the fourth hour because I really like Hoda Kotb.) The today show was definitely one of those things that got me from one day to the next. It was something to do every day that took many hours and was a good distraction.

Then I would work on school stuff for an hour or two. I didn't have the stamina to work on anything for very long. On Tuesday and Thursday my French teacher Mme. Powell would come over for my French tutoring sessions. This was always a nice way to break up the day and it was also nice to visit with Mme. Powell.

My days often included a nap at some point too.

During radiation I had treatment in late morning and afternoon every day. Monday’s were doctor day at UW and I’d meet with my radiation specialist, Dr. Douglas. Wednesdays are brain tumor clinic days at the Hem/Onc. Every Wednesday I’d have an appointment with Cory or Dr. Leary. Some weeks I had to go to the Hem/Onc multiple times for platelet or red blood cell transfusions when my counts got low.

When mom went back to work fulltime, she still came home at lunchtime to check in and eat lunch with me. As the feelings of loneliness and isolation increased I looked forward to her coming more and more. I’d count down the time until she'd come home, one more show, one more homework assignment.

The routine was repetitive. Days were similar and blended into a blur. That was why I really appreciated any alterations or surprises like an outing with my family, a visit from Megan, when mom’s friends CJ and Amanda would come in the mornings, getting a card from Grammie or Pattie, even having physical therapy.

Mischief Managed,

Sammy

Run of Hope Total: $1,685

To contribute, please visit: 
http://www.firstgiving.com/fundraiser/sammy-loch/2014

If we raise $2,500  by September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt!  Thanks for your support!

Doc Loch

There were several people who were very important to me during (and beyond) treatment. I’d like to highlight some of these people in posts throughout this month.

***

I must start by saying that my brother, Brandon, is my very best friend. We are incredibly close and I can't imagine my life without him. This was especially true while I was on treatment. Brandon, at only 13 years old, was one of my very best caregivers. This role started during the summer after I had surgery on my foot. When treatment started, he made sure I got downstairs and was ready to go every morning before he went to school. (Slathering many a bagel with strawberry cream cheese.) He concocted the best 1000 calorie shakes around and did everything he could to help me.

At Children's for an appointment

If you know Brandon, you know that he is a scientific thinker. He earned himself the nickname Doc Loch within the first week that I was in the hospital. He always had incredibly thoughtful and intelligent questions for my neurosurgeon. When Dr. Ojemann (neurosurgeon) saw him in my room he made sure to ask if Brandon had any questions. The legend of Doc Loch quickly spread to the clinic where Brandon was treated like quite a celebrity when he came to appointments with me and mom over winter break (a list full of questions for my med team in hand.) While managing his schoolwork, Brandon also did his best to stay on top of my appointments, treatments and prescriptions, which he continues to do today.

Brandon visiting while I was in the hospital for 6 weeks.

When I was in the hospital for six weeks with necrotizing fasciitis Brandon and Dad’s nighttime and weekend visits always made me so happy. They often brought dinner, which was a great reprieve from the repetitive hospital food. On weekends we sat on the deck and talked and played board games.

In addition to being an amazing brother, Brandon is an amazing person. He is incredibly intelligent and interested in so many things. For example, he is currently teaching himself both Latin and Hebrew. He is also a very talented musician and artist. He taught himself how to play oboe and paint water colors. Most important, he is genuinely kind.

Now Brandon is starting his first year of college in Missouri at Lindenwood University studying biochemistry on a premed track. It is his goal to become a doctor and work in pediatrics.

I am so proud of you Brandon and I love you very much. I couldn't ask for a better brother.

Ectomorph hug!

Mischief managed,

La Soeur Sammy

Run of Hope Total: $1,585

To contribute, please visit: 
http://www.firstgiving.com/fundraiser/sammy-loch/2014

If we raise $2,500  by September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt!  Thanks for your support!

Part 2: The Radiation Routine

After the horrible experience of simulation was over I quickly settled into the daily routine of radiation, which went something like this

-Wake up, get ready

-Drive to Seattle

 -Morning appointment at Children’s for Carbo infusion

-Lunch

-Drive to UW Med [which could take up to 45 minutes to go about 3 miles]

-Wait for radiation appointment

-Lay on uncomfortable table for 45 minutes to 1 hour

-Drive home

-Repeat again tomorrow (for 30 days)

I started radiation treatment a few days before Thanksgiving. I remember Dean, one of my radiation technicians, telling me I was lucky I started when I did because I’d still be able to eat Thanksgiving dinner (which happens to be my favorite dinner of the year.)

My last haircut for over a year

The effects of radiation are cumulative, so they don’t start right away. For the first two weeks of treatment I was feeling pretty good. No more massive headaches or nausea. By the end of the second week my hair had started to fall out. One morning I awoke to clumps of hair on my pillow and even more came out in the shower. I didn’t tell anyone all day. I had a haircut scheduled for that night to even it out after my surgery shaving. I did think about having Tracey shave it off, but I decided to have her just cut it even though I knew it was going to fall out anyway. 

Around the same time other side effects of radiation and chemo began to set in as well.

I was incredibly nauseous and threw up several times a day. My diet became very limited and I was very sensitive to cooking smells. One time scrambled eggs even smelled too strong.

 Over the next four weeks I became increasingly weak and fatigued. By the end, I had to be pushed in a wheel chair to get from the parking lot to the clinic and my dad would have to carry me up the stairs at night to get to bed.

Radiation burn can be seen on my neck in this picture.
It is also the only time I have ever been tanner than Megan.

Radiation also comes with radiation burn (basically very intense localized sunburn). For me, it appeared as a bright red stripe down my spine. It was very painful, but there were some suggested pain management techniques. My mom, being the mother of invention, rigged up a system for me. She taped a piece of moistening gauze slathered in Aquaphor lotion to the inside of a cami since taping the bandage to my skin would further irritate the burn. Radiation burn is so severe that there is actually a thing called after burn where the radiation enters through one side of your body, exits through the other side and leaves a burn on the way out. 

On their last day of radiation, pediatric patients at UW get a beanie baby husky dog (UW mascot) and a certificate of completion signed by the doctors nurses and technicians. As I watched other patients leave at the end of their treatment, I couldn't wait for my turn. Finally, the last day arrived, Radiation Graduation (as my dad called it), and I couldn’t have been happier. 

Radiation Graduation
My mask is in my lap , inside it is my husky.

Without a doubt, radiation was the worst part of treatment. I didn’t want to go one day longer than I already had to, so I fought every day to get to the hospital. Some days it was a very close call and I barely made it out of the house on time, but I never missed an appointment.

Following radiation I had 6 weeks off treatment before I would start six rounds of monthly chemotherapy.

Mischief Managed,

Sammy

Run of Hope Total: $1,545

To contribute, please visit: 
http://www.firstgiving.com/fundraiser/sammy-loch/2014

If we raise $2,500  by September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt!  Thanks for your support!

Thoughts Besides Cancer

Although my cancer diagnosis dominated my thoughts in the fall of 2009, I wanted to let you in on something else I was thinking about at that time.

Around the same time I was diagnosed with cancer I was experiencing another traumatic life event. My little brother had just gotten taller than me. This was not surprising, it was inevitable and logically I knew that. Yet somewhere deep in the recesses of my cancer-ridden brain was a 10-year-old girl who believed, of course, she'd always be the biggest, she was the "big" sister after all. That 10-year-old girl resurfaced at this time and was very disappointed to have been surpassed by her baby brother. I guess it's like they say, "When it rains it pours." :)

As I have been reflecting on my experience with cancer this funny little anecdote came up and I thought I should share it because while I was a cancer patient I was also a big sister thinking about big sister things like who was the tallest. I was also many other things; I was a friend, a daughter, a reader, a learner, a teenager, and so many more things. I wanted to share this story because often sick or disabled people, especially really sick people, are seen as only that, "a sick person," a symptom, a disease. When really they are just people who are complex and have hopes and dreams and desires, they just happen to be sick. I try to remember this and the work I do with Sunshine Kids and Camp Korey and in life in general. Seeing people as people breaks down barriers and deepens connections. From experience, I know that it can also be a gift for someone when you see them as a whole person and  not just their disease or disability.

Just so you know, I have come to terms with the fact that my brother is taller than me. I am now a proud big sister of one amazing big little brother. (you will hear more about his awesomeness in a future post.)

Mischief Managed,

Sammy

10 year old Sammy& 8 year old Brandon

16 year old Sammy and 14 year old Brandon

Run of Hope Total: $1,445

To contribute, please visit: 
http://www.firstgiving.com/fundraiser/sammy-loch/2014

If we raise $2,500  by September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt!  Thanks for your support!

Part 1: Radiation Simulation

Four weeks after my brain surgery I began the process of starting radiation therapy.

Seattle Children’s doesn’t have radiation therapy machines, so I had to go to the University of Washington medical center for treatment.  UW Medicine was such a contrast from the bright colors and decorations at Children’s. Everything was white and clinical. It felt like a maze because all the hallways looked the same. The people were different too; not as warm, welcoming and understanding. I quickly became very grateful that I was young enough to be treated at Children’s. I wondered why adult health care didn’t have the same standards of taking care of the person not just the patient as child-centered health care. What would adult health outcomes be like if regular hospitals functioned more like children’s hospitals?

I digress. My first step was pre-stage where I had a mask made that would hold my head still during treatments. I also had a CT that would help with alignment at the next stage; simulation. The people working with me were very nice and sensitive to my situation. They were very kind and made me feel more at ease about the whole process. I can’t remember their names, but I am very grateful for their kindness.

Unfortunately, I didn’t stay at ease for long. My next appointment was for my radiation simulation, the process used to define the radiation treatment field. This is a very important step of the process that defines the areas that will be exposed to radiation in order to limit exposure and damage to other tissue and organs. The process is similar to having a CT or MRI done. The patient has to lie very still on a hard table. I also had my head attached to the table by the mask made in the previous stage. The process was supposed to take maybe an hour.

My alignment was unusually challenging and I was on the table for several hours. Every time the door opened I thought it was over, but instead a new person would enter and adjust my position, trying to figure out why it wasn’t working. As each lab-coated person entered I felt more and more like a science experiment and less like a human being.

I felt vulnerable and nervous and scared. There I was, 15 years old, nearly naked, strapped to a table trying to keep completely still waiting and hoping that this would all be over soon. (I also really had to pee.) I was so uncomfortable. The table was so hard; especially for my head which was still tender around the surgical incision. I was scared because I didn’t know what was going on and felt very self conscious lying on the table with all these people peering down  at me. Nobody asked how I was doing they just came in, re-positioned my body as if I were a puppet and didn’t explain what was going on. I kept thinking to myself that the next time someone came in I’d ask to go to the bathroom. I felt conflicted. I wanted to move so badly, but what if I got up and it messed everything up? I also thought that I should just stick it out so that it would be over.

There are a few moments of sensitivity and compassion that stand out in this experience. At some point, my technician, Jamie came in on her own to talk to me about continuing and to give me a short break. I was so grateful to be able to move and know a little bit more about what was happening. Throughout my treatment, Jamie was always very kind and thoughtful. She approached everything in a very sensitive and personal way that helped me to feel more comfortable with the situation.

After Jamie left, simulation continued. Finally, the nice man from pre-stage came in to help. He talked to me instead of about me and said we were going back to the CT room. I asked him if I could go to the bathroom before returning to simulation. When he said I was done for the day, I was so relieved I wanted to hug him.

This was the most uncomfortable, dehumanizing, degrading experience in my life. Thank goodness for the man from pre-stage and Jamie who were sensitive enough to recognize my discomfort and help me.  I think a major problem in our health care system is that practitioners can get so focused on diagnosing and treating the patient that they forget about the person behind the symptoms.

In health care and in life compassion goes a long way. Practicing compassion in every part of our lives allows us to remember that other people have feeling and fears too. Taking the time to recognize that can make all the difference in the world to another person.

Mischief Managed,

Sammy

Run of Hope Total: $1,420

To contribute, please visit: 
http://www.firstgiving.com/fundraiser/sammy-loch/2014

If we raise $2,500  by September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt!  Thanks for your support!

The Curly-Haired Girls Club

When I was on treatment I was very fortunate to have such an incredible medical team. They all took such good care of me and were so supportive of me and my family. My primary team consisted of three wonderful ladies, Sarah Leary, Cory Hoeppner, and Katie Steffl. Katie named our little group “the Curly Haired Girls Club” since she, Dr. Leary and I had curly hair. Cory has wavy hair and my mom used to have curly hair, so we figured that counted too.

My team was headed by my fabulous oncologist, Dr. Sarah Leary. She steered us through the long road of cancer treatment and recovery. She was very good at explaining the entire treatment process. She would discuss what was happening in the present while keeping a long range view on what was yet to come. It meant so much to me that even though I was still considered a "child," she wanted me to have a say in my treatment. She explained everything to me and not just to my parents. She made me feel a part of decision-making instead of feeling like things were happening to me. Her role in my life has changed over the past five years. She went from expert care giver to longtime friend and supporter. No matter how her role in my life changes, she will always be the fearless leader of the “Curly Haired Girls Club.” I couldn't have had a better oncologist and supporter.

[Dr. Leary and I at my last chemo]

It wasn’t until a few weeks after diagnosis that I met one member of my team. I finally got to put a face to the name and met the legend herself, Cory Hoeppner, nurse practitioner extraordinaire. Into the room came this red-haired Canadian woman who kept the laughs rolling with the brand of sarcasm that fell right in line with my family's sense of humor. Cory is one of the smartest people I know. She has worked in the oncology field for many years and knows all the tricks of the trade. She got me through the day-to-day challenges of being a cancer patient with all sorts of magic home remedies for the various side effects I experienced from treatment. Cory has continued to be a go to person for information, for both me and my inquisitive brother. I will be forever grateful for her expert care, snappy wit, and unending support. She made such a personal connection that she began to feel like “my Cory.”  It wasn't until the 2010 Run of Hope that I realized she was everybody's Cory. That she made a special connection with each patient and family that came through the brain tumor clinic.

[Katie, Me & Cory]

Rounding out my main team was Katie Steffl, RN, who taught us everything we needed to know about the do's and don'ts of being a cancer patient. Katie had a positive and sunny attitude that always made me feel better. Over the year we spent together she became almost big sister like. Katie’s first task was teaching us “The Book” on cancer treatment. “The Book” is a three-inch binder filled with all the information a patient and their family needs to know while being treated for cancer. She patiently worked through the book with my parents while I was recovering from brain surgery and finished her lessons when my mom and I came in for clinic visits. In the many visits to the clinic that followed Katie would always stop in to see how I was doing or if I need anything. One of my funniest memories of Katie was when she brought me a bag of Doritos after I was prescribed Marinol (and anti-nausea drug that is derived from marijuana). Before I was prescribed the drug we had joked that it should come with a bag of Doritos.

Although she has moved to a different position at Seattle Children’s she still stops to chat if she sees me when I come into the clinic. No matter where she goes within the hospital, she will always be the founding member of the Curly Haired Girls Club.

Other members of my super-team included hem/onc M.A. Cindy, and the many wonderful nurses of the infusion center including; Aaron, Heather, Jen, Gen, Erin, Anna, Kirsten, Tracy, Kelly, Robin, Marcy and many more.

 

 

 [Top Left -Cindy; Top Right - Heather; 2nd Row Left - Erin; Right - Aaron; Bottom Center - Gen & Marcy]

This amazing team helped me through the most difficult year of my life and I don't know what I would've done without them.

Mischief Managed,

Sammy

Fist Day in the Hem/Onc and Pink Glittery Inspiration

The first time I was in the Hem/Onc clinic was to have an IV placed and labs drawn before surgery to insert a port (central line) into my chest.  The Hem/Onc waiting room was unlike any waiting room I’d been in before.  Everything was so brightly colored. One wall held a display case showcasing a PEZ dispenser collection and on another   hung a brightly papered bulletin board displaying patient artwork.

I remember sitting on the lab side of the waiting room with my dad. Just waiting.  And thinking. I knew I was really sick, but I didn’t feel sick. Now that the headaches and nausea were gone, I felt pretty good actually. I remember feeling somewhat uneasy about treatment was going to go. I also felt almost guilty looking around at the other patients waiting with their families. I was feeling good and had a full head of hair while most of them were bald, attached to tubes and looked exhausted.

We had been waiting for a while when in bounced a pink, glittery ball of energy in the form of a four-year-old girl. You could tell she had been a patient for a while because she enthusiastically greeted many of the doctors and nurses that passed by us.She had so much energy. She hardly stopped moving and smiling and talking. If it weren’t for the bald head and small stature, you would never know that this sweet little girl was also a cancer patient.  I remember thinking to myself, “Wow, she’s amazing!” She defied every notion I had about what being a cancer patient was like. I thought, “If she can do it, I can do it.” I saw her in the clinic many times and she always inspired me to keep going and keep smiling. She was also my roommate during one of my chemo treatments and I was able to share with her dad what an inspiration she had been to me.

This young girl was the first of many young patients I came to know and be inspired by. Others included Little John (another inspirational roommate), Brooke (my tumor twin), Gillian (fellow member of the curly-haired girls club), and Keaton (my Run of Hope buddy).

It was my experiences with these patients and others like them that inspired me to want to work with children in hospitals as a Child Life Specialist.

Mischief Managed,
Sammy

Run of Hope Total: $1,420

To contribute, please visit: 
http://www.firstgiving.com/fundraiser/sammy-loch/2014