Chapter 7: Rachel !
As a 14-year-old, I was working to discover myself and, like most teenagers, was confused at to who I wanted to be. My biggest concern was making boys like me and finding a way to fit in. I couldn’t pick an identity. I was an athlete, but also wanted to try out for the cheer squad. I was into piercings and colorful hair but also shopped at all the preppy stories in the mall. Most devastating were my feelings of being unwanted and lost, often wishing that
something bad would happen to me so people would give me attention. The summer after middle school was rough, but once I finally got to high school, things started getting better. I had an amazing group of friends and met some great new people. I was one of the few freshmen who made the JV soccer team and made the cheerleading squad. I was having so much fun and was feeling better in my own skin, finally figuring out who I was. My best friend was on the cheerleading squad with me, and the two of us spent all of our
time together. We lived on the same street and would hang out every day after school. We would mess around prank calling people, doing crazy makeup, hanging out with boys, and other random 14-year-old things. I loved my life so much and could feel my life becoming nearly perfect. One day during an away soccer game, I took a hard fall onto my right shoulder. It felt paralyzed. I take pain well usually, but this was unbearable. This shoulder had felt uncomfortable for me for a long time but nothing like this. That fall sent me in to my
doctor for an x-ray. He was at a loss, thinking maybe it was a distended bursa, and sent me to a sports medicine clinic. The doctor there ordered an MRI of my shoulder and determined that the scan showed a tumor. Without many answers, that doctor sent me to Seattle Children’s Hospital. At Seattle Children’s I met a tumor specialist who informed me I would be having a biopsy the next week. He said he was 99.9% positive the tumor was benign and if it was, he would remove the tumor, if not, he would leave the tumor in. I was confident in
the doctor’s belief that it was an innocent tumor and all would be well very soon. By this point, the word had spread around the school that I had a tumor. I was embarrassed. People thought I was dying over something I thought was nothing. Maybe they knew something I didn’t. Even though I felt it was something little and embarrassing, they showed so much support it was incredible. I felt so loved and so blessed and knew that with their support this little surgery would be a breeze. I loved all of the kind notes and words people were
sharing with me. I thought back to the summertime when I wished something bad would happen to me and I felt like this was that “thing” and it was great getting all the attention! But… Be careful what you wish for…
The night before surgery, my family drove about an hour to stay at a hotel close by the hospital since check in was early in the morning. I had never had surgery before and all the questions of the unknown were racing around my mind. I remember just
staring at my shoulder and thinking it would never look or feel the same, without a thought in my mind of what would come the next afternoon. !
When we got to the hospital, I had butterflies speeding around in my stomach. I felt that I had to stay strong for my family even though inside I was very uneasy about being put under. I found every ounce of courage I had in me and walked back to the surgery table. The anesthesiologist sensed
my nerves and played me “Ice Age” on his phone as I drifted off into a deep sleep. !
Beep. Beep. Beep. That obnoxious monitor beeping woke me up 4 hours later. I kept trying to fall back asleep but the nurse wouldn’t leave me alone. Finally I was able to keep my eyes slightly opened but was still dazed. My surgeon came to my bedside. !
“You’re doing great. During your surgery, the results were not clear and after initial pathology we left the tumor in.” I knew
exactly what that meant. Emotionless, I replied, !
“Okay.” !
The next few days were a blur. Recovering in the hospital, my friends and family made the drive to visit and new doctors and nurses from the oncology unit came by every day. The pain meds made me out of it and that, along with the life changing news I’d just received, made me physically and emotionally numb. Just two
weeks ago I had been on cloud nine because of how my life was going and now I had a disease. This was something I had a very hard time wrapping my brain around. !
On November 20, 2007 I was officially diagnosed with Synovial Sarcoma, a rare soft tissue cancer. The day I was diagnosed I was not scared. I did not feel hate, anger, or anything at all really. I knew this would be a bump in the road for me, but I also knew I would overcome. Maybe I was just naïve but I knew I had “Team Henley” behind me, and
felt stronger than ever. I just had no idea how big of a fight this would be. !
About two weeks after my surgery, I had another small surgery to have my Hickman line placed. A Hickman line is a permanent IV that was placed on the left side of my chest. I had two tubes coming out of my chest and medicines would be attached directly to that to be injected. I was feeling good and getting so much support. My best friends had silicon bracelets and t-shirts made with Team Henley written on them
and every Tuesday tons of people would wear the shirts. This support helped me to feel confident in the journey that was to come. Shortly after I had my Hickman placed, I started Chemotherapy. The treatment plan was a clinical trial that consisted of combining two traditional chemotherapy drugs with radiation. My treatments were four days inpatient of the chemo drugs Ifosphamide and Doxorubicin. These treatments were every three weeks. After the first few treatments, I started radiation
in January of 2008. I had radiation daily for six weeks. Every morning, my mom and I would wake up and make the hour-long drive to Seattle for treatment, and after treatment was finished we would make the drive home so I could go to school. Because my blood counts stayed relatively normal, I made the choice to stay in school during my whole treatment and even continued cheerleading as much as I could. It was important for me to keep my life as normal as possible and the normalcy helped me to keep fighting so diligently.
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Late February, I had the big surgery to remove the tumor in my shoulder. During the surgery, they removed a lot of my shoulder, including my deltoid and half of my rotator cuff. My right shoulder is significantly smaller than my left and is much weaker than it used to be. The surgery was successful and hearing the words “all margins clear” were the best words I’ve ever heard. It was so exciting to know I no longer had this devil living inside of me- or so I thought.
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After surgery, I had a few more weeks of radiation and a couple more rounds of chemo. On my final scans I had a small blur in my right lungs but my doctors were not too concerned. May 16, 2008, just after my 15th birthday, I oďŹƒcially became a cancer survivor. !
I quickly returned to my normal life of soccer, cheerleading, friends, and school activities. I got very involved in Relay for Life and volunteering at the hospital. I moved on
from my life with cancer and it felt like a distant memory or even a dream. Four years later, I went o to college. When I was well into my first year at school, I found that, while running, I was having a harder and harder time breathing as time went on. Being so active I found this slightly odd, but figured I just had a lingering chest cold. !
My four-year post-treatment check up came and I had my normal MRI, Chest CT, and heart scans. When the oncology nurse practitioner came in to meet us she had a
look about her that wasn’t normal. She told us that my right lung showed several tumors and I would need to have surgery. My family and I knew these weren’t just harmless tumors. This was cancer again. !
Friday, April 13th, 2012, I went in for a thoracotomy to remove the tumors. The recovery was horrible. The epidural they placed for pain control didn’t work and I woke up with no pain medicines at all. I screamed for help. My ribs had been separated and broken, my lung bruised, and
a huge muscle in my back cut in half. My body felt all wrong. At the post surgery appointment, I was told the surgeon did not get good margins, meaning it is unsure if he left some tumor behind. My heart broke. I knew that since the cancer came back after all the treatment I had done to kill it, it was a resilient cancer. At my 6-week scans, the tumors had completely grown back. I immediately started a chemo pill which allowed me to go back to college, but at the end of the semester, scans showed growth in my cancer and I had to leave college and
switch hospitals in order to get access to clinical trials, since they were my best option. I started a trial chemo drug but after two treatments, scans showed further progression of the tumors. The next trial I was on worked great. I was able to enroll in online classes and pursue my dream of becoming an interior designer. !
In September, I had scans to see how this chemo was working. On our drive to the clinic to find out the results of my scans my doctor called and said he had good news
and bad news. He told me my tumors were still stable but I had a collapsed lung and needed to go straight to the hospital and check in. I was to have a pleurodesis procedure. The tumors had poked a small hole in my lung and caused air to continuously leak out. Putting a tube in to drain it would likely only be a temporary solution and the pleurodesis was a more permanent solution. !
Since this procedure I have had strong nerve pain and am on the maximum dose of
oxycontin along with high doses of nerve medication and am still in extreme discomfort. After my lung collapsed and I had to recover from surgery and put treatment on hold, the tumors grew once again, and this time, they found a tumor sitting on my liver as well. !
Treatment after treatment, I was having a hard time finding something that worked. We tried radiation to shrink the liver tumor with little luck. We then decided to try the treatment I was on in 2007 and 2008. After
the first treatment I went home and was feeling okay. The next day I would have to go back to the hospital to get a neulasta shot to help my blood counts. That morning I couldn’t get up. I attempted several times but would pass out. I was stuck upstairs and desperately needed to get to Seattle for my shot. My family ended up having to wrap me in a blanket and carry me down the stairs. The recovery from these treatments was terrifying. For the first time, I really thought I was going to die. I lost 25 pounds and didn’t recognize my completely hairless head and
face. The nausea, the weakness, the awful taste in my mouth‌ it was all awful. But I knew it was what I would have to do. I would have to put myself through hell in order to have the possibility of beating this. We finally found a treatment that was shrinking the tumors slightly, and then we ran into another problem: I reached the maximum lifetime dose of ifosphamide, and continuing could cause damage to other organs. Devastated, my doctors and I decided that continuing was not the best idea and I needed to find another option.
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Now 21, currently I am waiting for issues to settle with insurance so that I am able to get back to searching for treatments. For a third of my life, cancer has been my battle. My battle has been long and may be far from over but despite the pain and the frustrations I am strong and I have my “Team Henley� army of supporters behind me and my faith to lead me. !
Thank You--
Cancer is a battle that is not fought alone. Sure, it’s one person getting poked and poisoned, but there’s so much more to cancer than that. Cancer can be extremely lonely for the patient, so sharing love and smiles with someone with cancer is so important. Many have told me they don’t know how to act towards me and want to know how I want them to act around me. I love this question because I know it means they care. So if you know a fighter, ask, or take my advice. It’s a balance; fighters like to talk about what they are going through- to a
point. We want to feel normal; we want to be treated normally. Fighters need family and friends and we want to share our stories. Don’t let cancer scare you. You are part of the fight simply by lending support. Since the very beginning of my fight, I have had an amazing support system. Team Henley has given me so much joy over the years and I feel so in debt for everything the entire team has done for my family and I. The meals for when my family needed a little help after days in the hospital. The donations you’ve given to help my family
with medical payments. The inspiring words and love to help me when I’m feeling down, and most importantly, your belief in me which has helped me to fight on every day. To my family, my best friends, and my boyfriend, the ones who have supported me at my weakest. Thank you for taking care of me at my worst, for spoiling me with favors, for carrying me when I couldn’t walk, pushing my wheelchair, running out to pick up my cravings at any time of the day, and thank you for loving me unconditionally every single day. I will do all that I can to
repay you, but nothing I do will amount to all that you have done and continue to do for me. And to my mom: my best friend, and my caregiver, thank you. Because of you I have never had to face an appointment alone. Because of you I have always had a friend to smile with, laugh with, cry with, and watch HGTV with. I am so lucky to be related to my best friend and to have never had a night alone in the hospital. You inspire me and I don’t know how you do all that you do. I
love you with everything I have and a little bit more. Thank you.