Note: Ellen Simon celebrates five years as a cancer survivor in February 2010. This is her story.
For three years, my doctors couldn’t diagnose my blood disorder. All we knew was that my white blood cell and platelet counts kept dropping. I really didn’t feel sick; I was just tired often.
My doctors noticed that my blood counts were dropping after I had shoulder surgery in January 2002. I went to see a hematologist in March, but the tests and bone marrow biopsy were inconclusive. We monitored my health, but nothing changed. I saw other hematologists, and there was a possibility that this blood disorder could turn into myelodysplastic syndrome (MDS).
In February 2005, I had yet another bone marrow biopsy, this time at Sloan-Kettering Hospital. This one revealed that I definitely had MDS. My doctor and I talked about all the options I had, and I decided to do some more research. Meanwhile, I suffered from a sore throat that wouldn’t get better. By April, doctors found a mass on my right tonsil. Surgeons removed the growth and the pathology report said the MDS had progressed to acute myelogenous leukemia (AML).
That’s when I got nervous. I asked myself: Why is this happening so fast? Why me? But I kept my positive attitude and told myself that I have too much to live for and nothing is going to stop me, especially when I have two wonderful children and a marvelous husband.
Well, I had to make up my mind on what to do next.
Dr. Ruthee-Lu Bayer explained that I needed to stay in the hospital for five to six weeks for chemotherapy. As a patient facing a dire diagnosis, you need to think positively. When I came to the hospital, I decorated my room to make myself feel comfortable, especially knowing I would be there for so long. I posted signs on the walls and on the door that said “Only those with positive attitudes may enter this room.”
I had well wishes hanging all over the room, balloons, stuffed animals and brightly colored squish pillows on my bed. When people passed my room, they thought it was a child’s room. When they saw me and asked about my decorations, I said, “I am a kid at heart.”
My thinking is that when your room is bright and cheery, it affects your mind, body and soul. I tried not to stay in my room too much, even though it was so beautifully decorated. I went around to different rooms and asked the patients to come and play with me. I told them they had to get out of bed. Beds are for night time sleeping only. If they wanted, they could sit in a chair. I hunted for recliners for different patients, so they could sit in a chair and not lie in bed all day.
The staff on 7 Monti is wonderful. When I found something for another patient, one of the staff members would help me move it to that patient’s room.
I was also one for parties. It’s amazing what a little party can do for someone. One of my fellow patients was depressed being in the hospital on his birthday, so I said to him, “Don’t worry, things will be good today – you just wait.”
I called my best friend and asked her to make some cupcakes and get me some party hats. When the cupcakes arrived, I decorated them with smiley faces. In the afternoon, I asked another patient if he would play “Happy Birthday” on the piano for us. Not only did he play this song, but he treated us to an entire concert in the patient lounge. We all had a great time, singing, tapping our feet and clapping our hands.
I tried to keep myself busy while in the hospital. Another time, we patients were all complaining about the food and how we all could go for a good slice of pizza.
So I planned a pizza party. I asked all the patients if they would eat a slice and then called a pizzeria highly recommended by one of the doctors. It was yet another great day on 7 Monti.
I did a lot of walking around the floor chatting with doctors, nurses, aides and support staff, as well. I was known as the mayor of 7 Monti. I gave out stickers to those who walked with me. In order to get stickers, though, my companions had to earn them with a positive attitude. I got many patients up and about.
After five weeks of chemotherapy, I went home for about a month. Then I was back in the hospital, but this time for a bone marrow transplant. I was a little hesitant about being in the Bone Marrow Unit (BMU); I didn’t know if I could handle being confined to a small room. I started to think positively again, and decided that I needed to keep myself busy while I was “vacationing.”
I called my room sun catcher village. My son made signs to post outside my room, and I painted sun catchers for my window. I must have made more than 45 of them during my stay. I hung decorations from the ceiling, too. I played music on my boom box. I sang, danced and made the staff laugh a lot. I made a bad situation into a great one.
My vacation in the BMU lasted five weeks. Of course, I had my bad days. For the most part, though, my time in the BMU was good and that’s because of my positive attitude, the overwhelming support from my family and friends and the special care I received from the staff. My loved ones sent me toys, books, good luck charms and cards, and I will never forget the staff. They each made my stay so pleasant. They are all special. Before I left the hospital, I offered each staff member one of my sun catchers as a keepsake.
I enjoy visiting everyone on 7 Monti and updating them about my condition, which is very good. I plan on visiting more and talking to patients who need a sympathetic listener and a boost of positive thinking.