Monday, September 15, 2014

Part Two: Six Weeks in the Hospital

Before I get to today's post:
Run of Hope Total: $1,835 - We're only $660 away from getting on the shirt!
If we raise $2,500  by TODAY September 15th our team name, Sammy's Blobslayers will be on this year's Run of Hope Shirt. 
Thanks for your support!
To contribute, please visit:


Needless to say, being in the hospital for 41 days is a very boring place to be, especially because I was mostly bed bound.

We got into a schedule based on my medical needs. I was on many different teams (oncology, surgical – orthopedic and general, infectious disease and pain management) and they all made rounds at different times of the day, so that helped take up some time. I also had physical therapy, which was my favorite part of the day. I was so restless, I just wanted to get up and move. I asked every doctor, "When will I be able to walk again?" No one could answer because there wasn't any way they could know, which I found tremendously frustrating.

Besides physical therapy, the other thing that got me from day to day was my quotes. Starting on Pi Day (March 14) I made a sign that I posted on my door. Each day I had someone else choose a quote from my quote book, (from my family and friends, to nurses and doctors, to the lady who brought my lunch every day) "drew" it, and posted it on my door. Every day people would comment on my quote of the day. It was really nice to make other people smile. Eventually people started to come to my room at the end of the hallway each day just to see the new posting.

To break up the day to day monotony, my mom and I played lots and lots of travel Scrabble. For those of you who don't know, Scrabble is my mom’s game, so it was very exciting to finally beat her. We also started watching the show Glee after we saw the cast on Oprah. I'm sure we looked funny huddled around the tiny screen of the net book my dad bought me. We also spent quite some time watching Golden retriever puppies (a friend of ours dog just had a litter ) via WebCam.

Before the infection, I had already started to feel alone and disconnected. My friends from school had started to fade away and I had spent a lot of time on my own in the six weeks between radiation and the start of chemo.

Being "chained" to a hospital bed for such a long time made those feelings worse. Time seems to
stretch on and on. I always looked forward to Sundays when my best friend Megan would come to visit. Pattie also came several times and Aunt Katie came for Easter. I also looked forward to Brandon and Dad’s visits very much. I missed being at home with them and seeing them all the time. When they came and we would sit outside or play board games or watch TV. They often brought dinner, which was a great relief from the hospital food.

A contributor to the feeling of loneliness was feeling disconnected. I could only use the computer when my dad was there with his laptop, so I had very limited ways of contacting anyone. I asked my dad if he could get me a netbook, which he did. Big Red (my netbook) was life altering. It made a really big difference to be able to connect with people and was great for relieving boredom.

For the majority of my time inpatient I was on a pretty good dose of morphine, which made me say some funny things. I gave one of my doctors a report on a book (the Landry News by Andrew Clements) that I hadn't read since the third grade and had long since forgotten. Some other favorites include: "Why do I always feel like I'm on an elevator?" "Penguins can fly!" "Why is there a house in the middle of the stairs?" "Feathers!" Due to my altered mental state, my memory was pretty shoddy. I told the same jokes over and over and laughed at the same jokes Megan told me every week.

I was in and out of the operating room so much I got to see familiar faces. Most memorable was a nurse named Cheryl. She was wonderful; I had her on several operations. She would always tell me jokes as they were putting me under anesthesia. The only one I remember is this: "Why was the tomato red?" – "Because it saw the salad dressing." I thought this was absolutely hilarious. On my last operation when my calf was closed with a skin graft Cheryl gave me a blanket she had embroidered for me.

The last of my 10 operations was to place a skin graft to close my calf. After the surgery I had to stay bed bound for two weeks because the graft was so fragile. After this period I moved out of the “Sammy Loch suite” and back to the oncology floor for my second round of chemotherapy.

Looking back, this infection was scarier than cancer. My cancer diagnosis came with a clear plan of attack. I knew pretty much exactly what was going to happen and what the side effects would be. The infection was chaotic and the plan kept changing. I didn't know when I would be out of the hospital. I didn't know when I'd walk again or if I'd walk again. Fortunately my leg was saved and I did walk again.

I was able to walk again with the help of an incredible physical therapist. Edwin Malijan is quite possibly the best physical therapist ever. He has taught me to walk no less than three times and I don't know how I'd be getting around as well as I am today without him. I swear this man has magic hands; he could cure any ache or pain I had. At one appointment Edwin asked how I was doing. I said that I wasn't doing very well and even my pinky hurt. So, what did he do? Edwin worked on all my ailing parts from my lower left leg to my back and even my pinky. For the two years after my infection and subsequent surgeries Edwin and I worked very hard. It began with just being able to walk and by the end of summer 2010 I was training to go back to school, which meant I would do many of my exercises with my backpack on my back. We trained to gain strength and mobility and I know I'm doing as well as I him today because of that the foundation Edwin helped me build from the start.

Mischief Managed,

Sunday, September 14, 2014

Part One: Something Worse Than Cancer

On Saturday February 27, 2010 I finished my first round of chemotherapy. By the end I was pretty tired, but overall it went well and I only got sick once.

In the week that followed I had the worst insomnia. There wasn't a night all week that I got more than two hours of sleep in a row.

The night of Saturday, March 6th was different. I couldn't sleep, but I also could not get comfortable because of a cramping feeling in my left calf. I went downstairs early the next morning because I couldn't sleep. I wrote a caringbridge post, watched TV, and waited for the painful cramp to go away. By late morning, I was asking my dad to get the crutches from the garage because it hurt too much to put weight on my leg.

We called the hospital and they said we should come to the emergency room right away. Dad carried me to the car, then he, mom and I drove to Children's. I remember sitting in the backseat gritting my teeth trying not to cry out as the pain got worse and worse.

When we got to the hospital my dad carried me is inside. They took me straight back to a room. (One of the perks of having cancer is that you get a fast pass through ER.)

The pain was unbearable. I was asked what my pain level was from 1 to 10. I said 10, but it was probably more like a 13. I tried to hold it back, but every once in a while a scream broke through my gritted teeth. The doctors tried IV dilaudid (my usual pain medication) and it barely took the edge off. They tried it a second time with the same result. No one knew why my leg was in so much pain, which made it harder to treat. Eventually, after what seemed like hours, I was moved to the inpatient cancer floor. My mom went home to get us some things to spend the night.

For the next hour, my dad held me as I screamed in pain while we waited for the pain team to arrive. When they finally came, I think I straight up asked for morphine. Once they hooked me up to the morphine pump and gave me some other meds to relax, I finally felt relief.

My leg after the first surgery.
By the morning my leg had swollen up to the size of a grapefruit. The oncology fellow decided to call in surgical. After being seen by general and orthopedic surgical residents and fellows and attendings, the head of general surgery, Dr. Waldhausen, walked in the room. He made the final decision to take me to surgery immediately.

During the exploratory surgery, the doctors found that tissue in my leg was infected by necrotizing fasciitis, a deadly flesh eating bacteria. They removed as much infected tissue as they could in a process called, debrieding. Over the next several days I went back to the operating room several times for debridement and dressing changes. When not in the operating room I was in ICU hooked up to a rigorous course of antibiotics, bags of blood products (red blood cells, platelets and granulocytes) and morphine.

In the ICU - Check out that IV pole
By the end of the week it looked like the infection was clearing up and there were plans to close the incision. Friday night I started to feel hardness and swelling in my left thigh that was also very red. Another exploratory surgery found that the infection had spread to my thigh. The spread of the infection meant more operations to remove the infected tissue.

After 11 days in the ICU I was moved to room 3009, a.k.a. the "Sammy Loch Suite", where my mom and I would spend the next 30 days.

All told I was inpatient for 41 days, had 10 surgical operations including a skin graft, had countless blood product transfusions, a rigorous course of antibiotics, and finished my second round of chemotherapy.

During this time, I experienced boredom and restlessness as well as feelings of isolation and being very much alone. I will talk more about all that is my next post.                      

Mischief Managed,


Run of Hope Total: $1,835
If we raise $2,500  by TOMORROW September 15th my team name, Sammy's Blobslayers will appear on this year's Run of Hope shirt!  (We're only $660 away - we can do it!) 
Thanks for your support!

To contribute, please visit:

Saturday, September 13, 2014

The Loneliest Number

One of the unexpected side effects of cancer treatment for me was isolation, a near crippling feeling of aloneness.

I had a very supportive family and small group of supportive friends, but I hated being physically alone. Every day I would count down to the time when my mom would come home for lunch and dread her departure. Being alone gave me too much time to think and I didn't like many of my thoughts. In a very dark time halfway or so through treatment I began to ask the question "what is the point?" Not what’s the point in my living, but the age-old philosophical question "what is the point in life" and all I could see was a cycle of pointlessness. We live and die trying to make life better for the next generation as they do for the next and it seems so pointless. This time was definitely my darkest moment when my depression was deepest. Many people didn't know how depressed I was or that I was in the depression at all while I was on treatment and returning to school.

This brings up an interesting point about depression. It is more complex than we tend to think it is and it’s not an all or nothing thing. I still smiled a lot and was happy often and kept a positive attitude while I was depressed. Those things don't make the depression less valid they help show the vast unknowable complexity of human emotion.

The above view of the pointlessness of it all is not what I really believe; these are the thoughts of depression and isolation. I believe that we live to make a mark. Not on the world, but through the connections we make with a few people throughout our lives and if we are lucky maybe more. This mark seems fleeting, but it is eternal. Because the people we connect with in our lives go on to leave their own mark through their connections with others throughout the present and generations into the future. In this way we are all connected to each other.

Mischief Managed,

Run of Hope Total: $1,785
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!

To contribute, please visit:

Friday, September 12, 2014

My Card Ladies

One of the things that kept me going and staying positive through treatment was looking for the little things in life to smile about.

There were two special ladies in my life that kept me smiling on a regular basis. My Card Ladies- my Grammie and my dear friend Pattie Holt.

Grammie & Grandpa's 2010 visit
Grammie was the card lady at her church so she was all over it when it came to sending me cards. She sent a card every week for over a year and they never failed to make me smile. Grammie and I would talk on the phone regularly, swapping hospital stories and complaining about our sucky veins. She really wanted to come to Seattle when I was first diagnosed, but couldn’t because she was having health problems herself. When I was hospitalized for nec fasc, she was bound and determined to come. The week I got home from the hospital she and grandpa flew from St. Louis to Seattle. It was so wonderful to see them both in person and get to spend time with them. My brain was still pretty muddled, so I don’t quite remember it all. I do remember showing off my new physical therapy exercises (which included walking from one side of the room to the other with my walker.)

Grammie & Grandpa at my graduation,
Grammie and Grandpa were also able to make it to Seattle for my high school graduation two years later. It was touch and go with Grammie’s health leading up to their trip. Somehow she willed herself to be better so they could come. It was wonderful to celebrate with them and good to see Grammie doing well. I will cherish these memories forever because it was the last time I got to see Grammie. After battling poor health for decades, Grammie passed away in November 2012.

Pattie (previously known as Mrs. Holt) was my middle school librarian, teacher, and track coach, now turned lifelong friend. She has been one of my biggest supporters for many years.  Pattie sent me a card almost every week while I was on treatment, was one of my most frequent visitors in the hospital and is a long time member of Sammy’s Blobslayers (always decked out head to toe in purple.)

I have to say, no one sends cards like Pattie. She finds the
most unique cards and saves them, waiting for the right person to send them to. (For me that means many book-related cards.) I still have the first card Pattie ever gave me in seventh or eighth grade, featuring the cover art of Charlotte’s Web. Many other Pattie cards are in frames around my room or tucked into my bulletin board.I still love getting cards from Pattie. They are always special and make me smile.

These two women did what may seem like a small thing, but was one of the biggest things that brought brightness to some of my darkest days. I am forever grateful for their never-ending love and support.

Mischief Managed, 

P.S. Between the two of them I received over 80 cards (and yes I still have all of them).

Run of Hope Total: $1,685
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!

To contribute, please visit:

Thursday, September 11, 2014

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,

Run of Hope Total: $1,685

To contribute, please visit:

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!

Wednesday, September 10, 2014

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:

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!

Tuesday, September 9, 2014

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
-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,

Run of Hope Total: $1,545

To contribute, please visit:

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!