In a Patient's Words

Teenager Bethany Marsh Thinks Back on Battling Acute Lymphoblastic Leukemia at Golisano Children's Hospital

Written by Bethany Marsh

Photo: Bethany March (center) smiles at a Teens Living with Cancer Banquet, together with nurses Kathy Morris (left) and Barb Farwell (right).

Cancer changes a person more than you'll ever know. I will tell you a short story of a very long journey that I have been on while undergoing treatment for Acute Lymphoblastic Leukemia.

Two years ago I started to feel different. My step was slower and every day became harder to handle. I went to my doctor several times. She thought it was just the flu. I am a fairly big girl, so I thought that I was just getting heavier and that I should really go on a diet and exercise more. I went back to the doctor, this time with crushing bone pain that ibuprofen and Tylenol wouldn't touch. I became weaker and weaker as they tried to figure out what was wrong. By the end of the day, the doctors in the small local hospital where I had been taken told me they suspected I had leukemia. That night I was hooked up to a morphine pump to help make me more comfortable. I could tell that my family was very scared. I don't think I would have been so frightened if I hadn't seen my mom crying. She is my security blanket. The doctor told me that the next day I would be transported to Strong. I should have gone that day but the weather was too stormy. The next day, after I was settled into my new room at Strong, my primary oncologist, Dr. David Korones, came in to tell me that I had cancer. I asked if it was curable, and he said yes it was. I told him that I would eat cat poop if it would help me to get better, and that it was time to get started! Little did I know what I was about to go through and how much my life as I knew it was about to change.

When I first lost my hair I'll admit that I was very devastated, but that lasted about a day. After that it became fun having no hair. Everyone thought that I was so cute. After my mom cut it she said, "Tweety! My baby!" (She always thought that I had looked like Tweety Bird when I was little because of my big eyes, long eyelashes, and the one or two strands of hair on my head.) It was also very convenient being bald. I didn't have to wash it as much. One of the best parts was scaring people as we drove by them in the car. No, I didn't care about the hair that much. I was more concerned about my health.

I have experienced a number of serious complications and side effects to medications over the past two years, including an anaphylactic allergic reaction to a chemotherapy drug, chemical hepatitis, the formation of three large blood clots in my heart along with pulmonary emboli, kidney stones, gastritis, seven compression fractures in my spine which confined me to a wheelchair for a couple of months, and necrosis and bursitis of the hip. I gained 40 pounds through steroid treatment and a drug called asparaginase, and lost 50 pounds after throwing up almost nonstop for three straight months.

Even during my worst times though, I have truly seen cancer as a blessing. The most important reason I believe this to be true is that I have met so many wonderful people. The nurses, doctors, and social workers who spend their days in this hospital are a special breed of people and are simply amazing. My doctors on the hematology-oncology team are so trustworthy, honest, caring, and compassionate. One of the things that I like best about them is that they treat me like I'm capable of thinking logically, and they expect me to ask questions and make suggestions about my own treatment. They want to know what I'm thinking and feeling. Eric Iglewski, the social worker for hematology/oncology patients, is such a cool guy. He is the most in-tune man I have ever met. Eric listens to you as though you are the only thing that matters at that moment in time, and what you say is golden. He knows when to give me space and when to act goofy like a best friend. And of course there are the nurses. They are so genuinely nice that you simply cannot get mad at them. No matter how much you want to scream and yell at someone for the way that your life is going. Because the people on the unit have seen so many other kids going through the same treatment as me, they were able to encourage me and give me hope and strength to believe I could come out the other side strong and well. These people have become what I know will be lifelong friends and sort of....well... family. I can tell them anything and feel so comfortable around them. I look so forward to giving them my "Bethy hugs." Then there is my Joann. All of the nurse practitioners are wonderful, but Joann, she's "mine." We have so much in common and we formed an instant bond from the moment we met. We both enjoy PBS and the great outdoors, and treat our pets like humans. A fourth of the way through my treatment I was introduced to a great lady and therapist named Patricia Lynch. I didn't know when we met that Patty would have such a great impact on my life. She has helped me meet many challenges and gotten me through some pretty horrible times. I tell Patty everything, and I keep no secrets from her. Another very courageous and special person I have met along the way is Lauren Spiker who started the Teens Living with Cancer organization after her own daughter lost her battle with a rare form of leukemia. This organization has given me many opportunities to meet other teens struggling with cancer, and Lauren has become a dear friend. And I've become acquainted with people from almost every specialty along the way: Cardiology, Nephrology, Urology, Gastroenterology, and Orthopedics. All I see when I think of my healers are smiles. Coming to this hospital has made me realize how many wonderful people there are out there who are devoted to helping others.

Another reason I feel cancer has been a blessing is that I have developed a relationship with my mother and the rest of my family that I might not have otherwise. A mother is more than just the person who gave birth to you. She is comfort and love. I never knew that a mother's touch could be healing until I got cancer. It's as if there is a flow of electric energy from her body into mine, making me better. I remember lying in my hospital bed while she would sit beside me stroking my brow trying to get the crinkled ridge in the middle to relax. Without her I wouldn't be here now. I'm certain of it. I cannot count how many questions she has asked my doctors over the past two years. And she has learned to do things like give me shots, IV fluids, draw my labs, and change my dressings. She has stayed with me during every hospital admission and even quit her job to stay home with me. My mom always says that any mother would have, but I don't believe it. There are many children in the hospital without their moms. I cannot imagine that. She has not left my side for more than a few hours at a time since my diagnosis. My mother and I have a relationship where I can tell her anything and she can tell me anything. We cry about the smallest things and laugh so hard at the silliest things.

My sister and I have come to realize how important we are to each other also. Even though she is five years younger than me, at times she takes care of me as though she were the big sister. She always makes sure that I'm okay and takes care of me when I need help. And my Dad always seems to keep the humor going when I need it. He helps keep the whole family sane. He and my sister made a very frightening dash back home from a school trip to New York City when the doctors discovered the blood clots in my heart, and we weren't sure what was going to happen. I hope to make it up to my sister by taking a long family trip together when this is all over.

I've learned so much these past two years. I've learned that my family, love, and reaching out to others are the most important things to me. Without them there is no true happiness. Cancer has helped me grow up into the person I've always wanted to be, decide what I believe in, and determine what I want out of life. This illness has made me think about the way the world works and how interconnected everything is. I learned how much the world takes for granted too. Simple things like taking a shower, brushing my teeth and walking up the stairs are amazing luxuries and require a lot more strength than you think. Every day I wake up I am thankful that I'm alive!

To anyone just starting out on this journey I would tell you to remember: you know your mind and your body better than anyone. Always tell people how you feel, and don't be afraid to ask for help when you need it, because there are terrific people in this world who are willing to help!

(A condensed version also appears in the Winter 2007 edition of the Strong Kids Newsletter.)