Vocab Lesson: Cancer 101

Entering the cancer/ hospital world requires a whole new language.  Before I start using a bunch of medical garble that doesn't make any sense, I thought I’d put together a glossary for you.

DIAGNOSES

Metastatic anaplastic medulloblastoma – A form of pediatric brain cancer with metastasis (spread) to my spine.

Hydrocephalous – The build up of cerebral spinal fluid (CSF) in the brain. Mine was from the tumor blocking the ventricle (empty space in the brain that holds CSF.)

Necrotizing Fasciitis (Nec Fasc [Neck fash]) -A deadly flesh-eating infection, which I contracted in my left calf and thigh.

CHEMOTHERAPIES
Carboplatin (Carbo) – Daily infusion before radiation

Cisplatin – One infusion with each round of chemotherapy

Cyclophosphamide (Cytoxin) – Two infusions with each round of chemotherapy

Vincristine – Weekly with radiation and once with each round of chemotherapy

SIDE EFFECTS of treatment-

Nausea/ Vomitting

Hair loss

Fatigue

Radiation  burn – Radiation therapy was delivered to my brain and spine. Radiation causes damage to the skin, like a very intense, localized sunburn. "After burn" formed from radiation that went through my back and left a burn on my chest and neck that matched the burned stripe down my spine. (As shown in this picture). 

Mucositis – Develops from the mass die off of white blood cells causing inflamed gums and mouth sores. (My shiny, swollen gums in this picture)

Late effects-Cancer isn’t over when treatment stops. Many patients experience lifelong effects from cancer treatment. Effects may not appear for some time after treatment.

Some of my late effects include minor hearing loss, hypothyroidism, estrogen deficiency, human growth hormone deficiency and memory loss.

MEDICATIONS

Zofran – Anti-nausea drug I used on a regular basis

Marinol - Anti-nausea drug made from a derivative of marijuana.

Ativan- Anti-nausea drug and relaxant

Dilaudid (Morphine) – pain medication

 OTHER

The Blob- My tumor’s nickname (bloblets – metastases on my spine)

Hem/Onc – Hematology Oncology (Cancer and Blood Disorders) Clinic

NG Tube- Nutrition/ feeding tube that is placed in the stomach through the nose

Central Line- Catheter placed under the skin in a vein to deliver medication, take blood etc.

            Port- CL placed entirely under the skin and accessed as needed (what I had)

            Hickman Line, PICC Line- other central lines

Infusion – Delivery of medication or blood products through IV or central line (Here I am getting Carbo before radiation).

Absolute Neutrophil Count (ANC) – Blood test that measures immune system levels

Simulation- Set up for radiation. Lasers are used to measure the precise locations (down to the millimeter) where radiation therapy will be delivered.

Mischief Managed,

Sammy

Run of Hope Total: $1,420

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

D(iagnosis) - Day

I was scheduled for surgery the morning of Thursday October 29^th.  The surgeons would remove the primary tumor (AKA the Blob) and insert a drain for the excess cerebral spinal fluid that had built up.

It is important to remember that at this point I had yet to be formally diagnosed with cancer, I just felt like I knew that’s what it was. In the early morning before my surgery I wrote the following entry in my journal:

When the doctor called with my results my mom answered the phone and I could hear her conversation from the other room.  When I heard I just got my shoes on, printed directions to the hospital and packed a bag.  Later at the hospital everyone was amazed by my laid back easy going nature.  I can attribute this to 2 things gratitude and positivity.

In a hospital it is easy to be taken over by negative thinking.  But I think that is just a waste of energy.  Instead I am planning on suffocating cancer with laughter and smiles, smothering it with hope, positivity and with the love and support of my friends and family.  That's not to say that I go around perpetually grinning.  Sometimes it's a struggle to stay positive.  That's when I just think of all I have to be grateful for.  Today among other things I am grateful for non-skid socks, visiting friends and apple sauce.  It's these rays of light that help me stay positive.

I know I am only at the beginning of my treatment but I can definitely say I am not putting up with cancer; Cancer's putting up with me!  

***

Analysis of the tumor confirmed that I had cancer. My diagnosis was high risk anaplastic medulloblastoma with metastases to the spine.

I don’t have a distinct memory of someone telling me that I had cancer, which makes sense since I already believed that I had cancer and I was pretty drugged up and out of it in the days following the surgery.

The last thing I remember being told before the surgery was that my Aunt Katie was coming from St. Louis. When I saw her in the ICU the first thing I said was. “Thank you for coming.” I am told I continued to thank her for coming every time I saw her after that.

In the nine days I was in the hospital following the surgery I had many visitors and received many cards and gifts. The outpouring of support at the beginning was tremendous.

Over the next several days I began to learn how to walk and take care of myself again. I also had double vision and had to wear an eye patch to see straight.

 Walking felt so strange. My legs felt so heavy. It was hard to think about how walking worked because it wasn’t something I ever had to think about before. I was really wobbly at first. I always had to have someone walk with me and hold on to the gait belt strapped around my waist. Eventually, over the next few weeks, walking felt normal again.

During my stay we also learned what my treatment plan included: 6 weeks of daily radiation followed by 6 rounds of monthly chemotherapy. My treatment was fast and intense because my tumor was of the fast growing variety.

At my first appointment with my oncologist, Dr. Sarah Leary, I elected to participate in a study that was trying to determine if some common additional treatments made the standard treatment protocol even more effective. The study had 4 arms:

1-      Standard (Radiation followed by chemo)

2-      Standard  + concurrent chemo with radiation

3-      Standard  + cis retinoic acid (Accutane – acne medication, which had been shown to stop tumor growth)

4-      Standard + Both concurrent chemo and retinoic acid

I was randomized to the fourth arm.

           

          From the first drive to the hospital throughout my stay there and for several weeks following I felt like I was floating in a state of serene calmness. Nothing bothered me and I didn’t worry about anything. I just floated through life. I don’t know if it was the trauma of brain surgery or if it was my body’s reaction to being alive or something else entirely. It was such a strange sensation. It was like I was on a different level or in a daze.

            Soon enough my serene state would end and emotions would begin to flow.

Mischief Managed,

SAMMY

Run of Hope Total: $1,215

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

Mass Invasion

In September 2009, I was 15 years old and a sophomore at Jackson High School. I was excited to have several classes with my friends and I really liked some of my teachers. School-wise it looked like it would be a good year. Unfortunately, I wasn’t able to be at school as much as I’d like because of debilitating migraine-like headaches accompanied by intense nausea and vomiting. I went to the doctor and he prescribed a migraine medication called Maxalt, which provided limited relief.

By the third week of October I had missed 10 days of school.  My doctor tried several more migraine medications to no avail. He ordered an MRI. Just in case, to make sure there wasn’t anything else going on. The test was scheduled for the following Tuesday, October 27^th.

That weekend was our homecoming weekend. Friday the 23^rd I made it to the homecoming football game with green stripes in my hair. I had a really fun time with my friends and hoped Saturday would be a good day too so that I could attend the homecoming dance. My friends and I had been planning to go as a group and I was looking forward to my first high school dance.

Somehow Saturday was a good day and I was able to go to the dance. My friends came over to my house first and we had dinner before driving to the school. I remember being very excited that I got to go and had fun with my friends. However, I also remember how the music seemed to pulse inside my skull and needing to sit down most of the time because I felt light-headed and fuzzy.

]

Tuesday October 27^th came and I was scheduled for the MRI at 4:00 PM. Around eight that night we got a call from the doctor’s office. There was a mass and fluid in my brain. The doctor said we should go to Seattle Children’s Hospital immediately.

As I listened to my mom’s side of the conversation from the other room, I was in a state of calm. I was relieved that the MRI had found something. If there was something there then there was probably something we could do about it and the excruciating pain would stop. I also knew that something was really wrong with me and that it wasn’t just migraines. I figured that the most likely thing to be in your head that wasn’t supposed to be there was cancer. The MRI seemed to confirm my suspicion.

My mom and brother Brandon, however, were in a state of shock, practically frozen in place. My mom asked my brother to get directions to the hospital, but he couldn’t move. I was already going upstairs to pack an overnight bag. Then I went downstairs and printed the directions to the hospital.

I remember the car ride to the hospital being very quiet. I thought about a lot of things on the way, but what I remember most is coming to terms with the fact that I would probably lose my hair. I loved my thick ultra-curly hair. It was one of my identifying features and some people even seemed to think of it as part of my identity. I was the girl with the curly hair. I wondered if losing that trait would change who I was. I realized that it didn’t matter to me if I lost my hair and that was all the mattered. Besides, I liked wearing hats anyway.

When we arrived at the emergency room, we were first screened for swine flu (this was during the crazy H1N1 epidemic).  Once we got into the crowded ER we waited and waited and waited some more (This was the beginning of a year of waiting rooms).  Finally, after several hours I was admitted.  When I was brought back I went through neurological tests (track the finger, balance tests etc.) several times. Each doctor that came in seemed perplexed that I performed so well on the tests. I guess they thought if they kept doing them over and over they would get the result they were expecting. I remember thinking, “You have seen the pictures of the mass in my head. You know something’s wrong. Can we be done with the testing already?”

Finally I was admitted to an inpatient room sometime around two in the morning. That night was the only night I spent alone in the hospital because Dad was out of town and Mom and Brandon couldn’t both stay with me.

The next day consisted of many more tests including an eye exam and an MRI of my spine that showed that my tumor had metastasized to my spine…

To Be Continued,

Sammy

Run of Hope Total: $1,215

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

There Is No Medicine Like Hope

There are several reasons I'm writing this series of blogs, but perhaps one of the most important is to bring attention to a cause that is very important to me.

So, before I get started on telling my story I wanted to make sure you have all the information about the Run of Hope.

The Run of Hope is an annual fundraiser for the Pediatric Brain Tumor Foundation which supports the groundbreaking research being done at the Olson lab at the Seattle Cancer Care Alliance.

This year it is my goal for my team, Sammy's Blogslayers, to raise $5000 to celebrate me being cancer free for five years.

Event info:

5K Run/ 3K Walk

Sunday September 28 at 10 AM

Seward Park, Seattle

Please support this very important cause by joining my team or donating. Every bit counts to make a difference in the lives of children with cancer.

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

Mischief Managed,

Sammy

To learn more about the research being done at Dr. Olson’s lab visit:

Dr, Olson’s Ted Talk (highly recommended): https://www.youtube.com/watch?feature=player_embedded&v=7IWMJhg2Zlc

Research funded by PBTF

http://www.pbtrf.org/#!research-efforts/ccej

Project Violet:

http://www.projectviolet.org/

Time to Tell the Whole Story

Starting September 1st I will be posting a blog every day for a month telling the story of my experience with cancer. On CaringBridge my family and I posted the basics of what was happening while I was on treatment, mostly general updates. You can tell I was having a bad day if I asked my mom to write. I never wanted anyone to feel bad for me or know I was having a difficult time.

I’ve decided to write this series of blogs for a few reasons:

  

-        September is Childhood Cancer Awareness Month and what better way to spread awareness than to share my own story.

-          I was inspired by my friend Patrick Betters who writes so openly and emotionally about his experience with cancer. To read Patrick’s beautiful posts please visit: http://clubcancerblog.org/  

-          October 29^th marks the big one in cancer birthdays. This year will be my 5^th year cancer free! Thinking about this significant milestone has made me to reflect on my experience with cancer and I’m ready to tell my full story.

-        The Run of Hope (5K run/ 3K walk) supporting Pediatric Brain Tumor Research is on September 28^th and I can raise support for this important cause through my blog. 

To join my team (Sammy's Blobslayers) or donate visit: http://www.firstgiving.com/fundraiser/sammy-loch/2014

Feel free to comment on the posts. I’d love to hear your feedback.

Mischief Managed, 

Sammy

Reflections

I have been working on a project for my sociology class about how having a children with illness or disability affects the family and I have reflected a lot about when I was on treatment and recovering.

Today I was filling my pill box, like I do every week, and I wondered to myself, "how many pills do I take every day?" and this little poem-esque thingy came to mind and I thought I would share it with you all.

I take thirteen and a half pills a day
I have trouble remembering things sometimes
I have over four feet of surgical scaring on my body
My ankle and foot don't function normally

but

I'm alive
I survived
I'm loved
I'm thriving
I'm alive



Mischief managed,
Sammy

(in case you're wondering, that's 94.5 pills a week and 4,914 pills a year)

4 years of second birthdays

What a year it has been! This is the first year since 2009 that my life has not been dictated by disease, treatment, pain or surgeries. It has been a wonderful year full of fun, excitement, learning, and adventure.

At this time last year my Grammie was very ill in the hospital and I asked for prayers and good thoughts for her. On November 4^th, 2012 she passed away. My entire family was able to go to southern Illinois for her services. While we were brought together for a sad reason, it was very nice to see everyone. We hadn't been all together since we moved to Seattle in 2005.  I miss my Grammie very much, but she is in a better place now and I know I will always carry her with me.

 

My first year of college was fantastic! I love being at Western, it is definitely the right place for me. I learned so much and a lot about many subjects I hadn't studied much before– anthropology, psychology, sociology, cinema. One of my favorite parts about being at Western is exploring Bellingham. It is so different than anywhere I have been before. A smaller town full of many independent businesses that support each other. I have never lived in a place before that really felt like a community. I have several favorite places including Michael’s Books (a used and rare books store), the Little Cheerful (a great place to go for breakfast), Mallards (home of the best handmade ice cream) and the Pickford Film Center (an art house movie theater). I love movies and the Pickford allows me to see independent and documentary film that I wouldn't get to see anywhere else. The Pickford is run by community volunteers. I have been volunteering on a weekly basis since the end of spring quarter. I have always wanted to work at a movie theater and now I get to work at a theater where everyone is excited about film and really likes working there.

Being at Western has also given me a lot of independence. The bus system here is really great and since I don’t have a driver’s license it has been the first time that I have been able to go wherever I want whenever I want.

Last year, I had a great time living with my best friend from high school, Brooke.  We definitely grew a lot closer and couldn’t have made it through the year without each other. I also made two really good friends, Kiley and Jessica. I had a really successful first year and am very excited for the rest of my time at Western!

This summer was the busiest, most fun summer that I have had maybe ever. It started out with a trip to Brookings, South Dakota for the Jennings Family Reunion (my dad's mom's family.) There was a reunion in Brookings in 2002 that we attended, but I can hardly remember. It was really nice to get to meet and re-meet many of the people who were so supportive of me while I was on treatment. I had a great time catching up with and spending time with my family. While there, we also celebrated my grandparents' 60th Wedding Anniversary. 

In short, the trip was 10 Days, 1971 miles driven, 50 hours in the car, 1 big family and a lot of fun!

When we got back from the trip I spent a week at home before going to Camp Korey for four weeks as a volunteer camp counselor. Camp Korey is a camp for children with life-altering medical conditions. I was introduced to camp in 2011 when I attended the Young Adult Cancer Retreat weekend. Camp is nestled on a hill top farm in Carnation, WA and it is a truly magical place. My goal is to work with kids in my career but before camp I didn’t really know how much I would like or be good at working with kids. I loved it! It was an incredible experience to watch kids whose lives are often full of limitations get to do things they never thought they would do, like perform on stage or fly down a zip line. (I have never seen more joyous smiles than when I was watching our campers at the end of the zip line.) Needless to say, it was a life-changing experience and I hope to be on summer staff next summer.

The week after I got home from camp I had surgery to straighten my left toes. It should be the last surgery (of thirteen) on my left leg. The results were great! My foot looks normal again, my balance is better and I can walk faster. I am very happy that the crusade to save and then rebuild my left leg and foot is finally over.

A fantastic day at Bumbershoot (Seattle's big music festival) was the cherry on top of my summer! My friend Jessica came over from Spokane and spent the weekend with my family. On Sunday, me, Brandon, Jess and Jess's friend Aria headed to Seattle Center for a day of waiting in line and watching awesome concerts. We started by waiting to get into the Key Arena to see fun. The concert was incredible! Nate Ruess's energy was explosive and didn't stop for the whole performance. (lead singer) The show had such great momentum. It is one of the best show's I have ever seen. After fun we got in line to get in line to see Death Cab for Cutie. Their performance was also fantastic! I had such a fun (pun possibly intended) time with my friends and got to see two really great shows. Definitely the best way to end a really great summer!

At the end of September I moved back to Western and lots of exciting things have happened in the month since then. I now have a job in the exam department of our Disability Resource office and I really enjoy working there. It is very exciting to have my first real paying job! I have found that while i am interested in psychology, I am a sociologist at heart. So, I decided to double major in Sociology and Psychology and will still  be able to graduate in four years. I am also looking into doing a service learning study abroad trip to Kenya and Rwanda next year or the year after. The trip is usually run through the sociology department, so I would earn credits toward my major. It is an incredible opportunity to learn about other cultures and become a more informed global citizen.

I am at a very happy place in life right now! Looking back at past years’ posts it is so striking to me how fast time moves and how much changes in a year. (I can't believe it. This time next year, Brandon will have graduated high school and have started college.)

Thank you for your continued support!

Mischief managed,

SAMMY

P.S. Only 1 year away from the big 5 year mark!