Sarah Gailey is a teenager. She plays water polo, the trumpet, writes in her journal, networks on Facebook, and sings Wicked’s “What is this Feeling” with her sister. Sarah also knows what it’s like to be a 68-year-old. Sarah was diagnosed in 2007 with Acute Myelogenous Leukemia, which is a malignant disease of the bone marrow and blood that commonly affects adults in their sixties. According to The Leukemia and Lymphoma Society, there are approximately 245,225 people living with leukemia in the United States.

Sarah has become a Cancer Survivor Activist. She formed her own team “Chemo Burnz” for The Light the Night Walk on November 20, 2009 5pm at Qualcomm Stadium in San Diego, California. She is requesting people to donate and to join her walking team. Funds raised through Light The Night Walk support the work of hundreds of the world’s best and brightest researchers in their search for better therapies and cures for leukemia, lymphoma, and myeloma. Here is Sarah’s story.

Me: You were diagnosed with AML Leukemia at the age of 16. How did you know you were sick?

Sarah: Well I was always getting sick and my hair was thinning but I was just a regular teenage person in water polo and marching band so I just thought it was stress. I didn’t have any of the typical symptoms of leukemia. I didn’t have any bruising and I was able to exercise every day. The night everything happened it hurt really bad to breath so I went to urgent care, they did a test and there was a possible blood clot so they sent me to the emergency room at Children’s hospital. More blood clot tests proved negative, and they couldn’t figure out what was wrong, so they were going to send me home. But my mom, with her intuition, refused to leave until they had a diagnosis. I went through more tests, none of them resulting in any answers, but then they wanted to do a bone marrow aspiration, which involves sticking a HUGE needle into your hip to pull out bone marrow and test for cancer. They told me they were 90% sure it wasn’t any kind of cancer but they were going to do the test just to make sure. To the doctors’ surprise, the results indicated that my bone marrow was 50% leukemic, and they told us that if we didn’t start chemo therapy right away I would be dead in four months.

Me: Describe your initial feelings upon being diagnosed. Were you always optimistic?

Sarah: When they first told me I had cancer the first thing I thought about was my family and how it would affect them. It was a very sad day, I couldn’t sleep that night I just stared at the wall. I was in denial for a long time and I kept telling myself that what I had was nothing compared to a lot of people. If you have ever been in the cancer ward you would know how much of a loving community there is there. God is very close to all of those sick kids. I felt him there with me every day and I knew that He knew the whole picture of my life. The conclusion that I came to was that God gave me cancer for a reason and even though it was really hard right then, I had hope that it would get better. Thinking about what I wanted in my future helped me to not focus on the pain.

Me: What treatment did you take? For how long? What were the side effects?

Sarah: Initially they started me on three different chemo agents. I was put on a study for a drug that they had previously used on kids with Down Syndrome who had cancer, so this made a total of four chemo agents used. The first round of chemo was 10 days, the second round of chemo was 7 days, the third round of chemo was 5 days and then I went up to City of Hope for another round of chemo and a bone marrow transplant. Within the first two weeks after I was diagnosed my hair fell out. I was very nauseated most of the time, experienced headaches, stomach aches (due to intestinal infections), and severe joint pains in my back, shoulders and neck. I was in the hospital for a month for each round of chemo and would go home for about 3-5 days and then go back up to the hospital for another round. I transferred to the City of Hope where my little sister was a perfect match for a Bone Marrow donation. I had to stay in LA after the transplant for 100 days because they needed to check for graft vs. host disease. My treatments took about 7 months.

Me: What was the worst part about having Leukemia?

Sarah: The pain and nausea were pretty bad. After the bone marrow transplant I felt like a 16 year old trapped in a 100 year old body. I couldn’t walk, I couldn’t lift myself up. I had chemo burns on my hands, elbows, knees, and feet so it hurt to put pressure on my body and to move around. My mouth swelled up so I couldn’t even swallow my own saliva without excruciating pain. I couldn’t bathe myself and my mom had to do everything for me. It was very difficult for me to accept that I couldn’t do things that people my age could do.

Me: What was the best experience with having Leukemia?

Sarah: There were so many good experiences with having the leukemia. I have grown as an individual because of it and I have been given so many blessings because of it. I was able to meet so many strong individuals who were battling cancer with me and I had understanding doctors and nurses. I became very close with my family. I was also able to get into contact with the Make-a-Wish foundation and last summer was able to go on a Mediterranean cruise.

Me: How did your family deal with your diagnosis?

Sarah: My family had a lot to deal with. My Dad went home the day of the diagnosis and told my little sister I had cancer. Her first question was “will she die? My mom and dad did a lot of crying, and they were all very scared for me. They had a hard time sleeping at the hospital but were scared to leave me alone in the hospital so they took turns staying with me so that they weren’t both exhausted at the same time. Mom organized care for my younger sister, with the help of many of our church members, and she and Dad both did a lot of studying and praying so that they were aware of what was happening and able to make some real hard decisions in an incredibly short amount of time. My older sister felt shock, sadness, and guilt because she was soon to return to Idaho to continue her education. Before she left, she spent several nights with me in the hospital and put on a “happy face” so that I could forget the seriousness of what I was experiencing for small periods of time. She helped me to laugh and smile in spite of everything that was happening. When she went away to Idaho she felt separated from everything because so much of my parents’ energy and time had to go into the care of my little sister and me.

Me: How did you mentally and emotionally get through this ordeal?

Sarah: I prayed a lot and received comfort from friends who came to visit me. I was able to look at it as a blessing that God would love me so much that He knew I would be able to get through cancer and all of the hard things that come with it. There were times when sleeping was a good escape from the pain, nausea, etc. but during my waking hours I used art and journaling as a way of expressing my feelings and forgetting how sick I was. I watched a lot of TV and funny movies. Because I was in isolation on several occasions, I wasn’t able to leave my room, but people from the hospital would bring games, movies, etc. to my room and I would enjoy the time they would spend with me. The massage therapist, Lisa, had magical hands that would help me relax and feel better.

Me: The cancer is in remission. How do you feel about life, yourself, your friends, and your future?

Sarah: I feel that I have had so many opportunities to help people because of the cancer. I am able to have a better understanding for people who are sick. I am excited for my future. I am thinking of going to med school and becoming an oncologist so that I can help cure and share my experience with my future patients and bring hope to them. Because I spent so much time in the hospital (and basically missed out on that year of going to school and being with my friends) I am finding the transition sometimes challenging. It’s as though they went on with their lives and I was “stuck” in that time. On occasion I find myself in situations where the cancer is the topic I relate to most but they don’t, so it makes it awkward to know how to navigate through the conversation without drawing a lot of attention to myself or alienating myself from them. When I first came home from the hospital, I was very susceptible to infections, or so tired or in so much pain that I was not able to be around people much. This caused awkwardness for them at times and loneliness for me. I’m grateful that that phase is in the past now.

Me: How is your health currently? Were there any side effects from chemotherapy?

Sarah: It was hard for me right after I was in remission to realize that it would take a long time for me to regain my energy. It has taken a while but looking back to how I was even four months ago gives me hope. My kidneys and my liver were affected by the chemotherapy, but they have pretty much recovered. Perhaps the toughest realization of adverse side effects has been that I may not be able to have children because I’m basically like a menopausal woman, requiring hormone replacement therapy so that I don’t have hot flashes or decreased bone density.

Me: Do you feel you had adequate care and information from the nurses and doctors while you stayed at the hospital?

Sarah: The doctors and nurses at Children’s Hospital and City of Hope were great. Most of them were very compassionate, understanding, and able to talk to me at my level. The Art therapist, psychologist, and child life specialists were all great at their jobs and they made the hospital a less boring place.

Me: What school are you currently attending? What do you want to study or be someday?

Sarah: Right now I am attending Grossmont College. I want to go into med school in my future.

Me: You mentioned that The Leukemia and Lymphoma Society helped your family with travel and medication funds. Is this typical for The Leukemia and Lymphoma Society? What else do they do?

Sarah: The Leukemia and Lymphoma society or LLS offers the most comprehensive array of services to blood cancer patients and their families. Only LLS provides individualized information to patients and their caregivers about their blood cancers, resources, treatments, and other critical issues. They have also created an implemented and innovative program, The Trish Greene Back to School Program for Children with Cancer, to help smooth the way for children returning to school after cancer treatment, with education and tools for teachers and school personnel. LLS also provides financial support and co-pay assistance to patients with blood cancers, helping them access treatments and drugs they otherwise might not be able to afford. LLS is a leader in encouraging all patients to consider clinical trials, which offer enhanced care and, for some, the only hope for a positive outcome.

Me: What made you want to get involved in Light the Night Walk?

Sarah: I wanted to give back. I received so much when I had the cancer and now it’s my time to help give back. This walk was perfect for me because it’s not a strenuous walk. It’s going to be a leisurely walk but at the same time it’s going to raise money for a good cause so I was excited to learn about it.

Help Sarah raise money for Light the Night Walk by donating to her team. http://pages.lightthenight.org/sd/SanDiego09/chemoburns

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