I was sixteen years old when my life changed forever. It was a hot summer day in July about three and a half years ago. I had a bump on my left arm that was nearly the size of a golf ball and it was causing the fingers on my left hand to hurt nearly every single day with a strange kind of pain that I could not explain. I was born with a disorder that causes non cancerous tumors to grow all over the body. However, on occasion these tumors can become cancerous, but it is not too common. I had been in pain for a while so my mom decided it was time to see a doctor. We had plans to go on a family vacation in Sunriver, Oregon so my mom made an appointment for as soon as we got back.
That was the start of a very long rest of the year and a major change in my life. The doctor said that it did not look good or normal and ordered an MRI. I got an MRI and it was sent to a pediatric oncologist in Portland, Oregon at Doernbechers Children’s Hospital. We got the dreaded phone call not too long after that it did not look good and they needed to see us right away. A couple of weeks later we were in the car and headed for Portland, Oregon. About five hours later we arrived at our hotel in Portland. The next morning bright and early we went to the hospital to start a very long day. I had a pet scan that morning and was not allowed to eat breakfast because of it. Afterwards we met with two oncologists and a surgeon and before I knew it I was getting prepped for surgery. They wanted to do a biopsy to confirm their suspicions of cancer. That was probably one of the worst and one of the longest days of my life simultaneously. I had never felt so miserable before. I was unable to eat all day and woke up cold and shaking from head to toe from the medication they had used for pain. Unfortunately, a couple of days later we learned that their suspicions were correct and I would need to come back. We went back to Portland again to discuss what to do next and I was terrified when I heard the words chemotherapy and amputation used by the surgeon who had no idea what he was talking about. We then met with another surgeon who specializes in removing tumors, who said that none of that would be necessary and it would be no problem to just surgically remove it. Two weeks later we were back in Portland yet again, this time for surgery and it was not a minor surgery. The tumor on my arm was on the arms main nerve and my arm would never be the same again once the surgery was complete. They would try to save what they could, but I would have very limited function in my arm once the surgery was complete.
We woke up bright and early the morning of surgery. We needed to be at the hospital at 6am. I was exhausted, but surprisingly calm; I don’t think the reality of it all had hit me yet. I had never had anything major happen in my life before and I had never even been to a hospital before all this. This surgery would be long and painful and require a long recovery with therapy and it would be a major surgery requiring a couple of hours. A few hours later I was finally wheeled back for surgery and before I knew it I was awake, yet groggy and in pain hoping that would be the last time I ever felt like that again. I had to stay overnight in the hospital and that made for a very long night, but I was able to eat soon after and was not in too much pain.
The hard part was what came next. My arm was wrapped up for around three months, I had to go to a very painful, hard, and frustrating physical therapy for about two months, and I had to go back to Portland at least three times for follow up appointments to make sure that my arm was healing properly. I had around 25 staples in my arm and getting them out was not a fun task. I had to get another MRI to make sure that they got everything and I also had to get another pet scan too. My fingers were now and still are permanently numb and my hand has very little function. Half of the fingers on my left hand feel really cold and heavy all the time and I still experience nerve pain even though the nerve is gone.
However, the PET scan revealed another suspicious bump, this time on my left leg, and showed that it had grown since the last PET scan which could mean that it is cancerous. Because of this they wanted to do another surgery. It was May of 2007 and a very bad time to be getting surgery. In June I would be finishing my junior year of high school and also in June my family was going on a huge vacation to Europe to meet extended family of my dad’s. It was not a good time to miss school, and vacation was less than a month away and would require a lot of walking. They wanted to do a biopsy first and then surgery a couple of weeks later, but luckily they decided to just do the surgery. I was very happy about that, I really did not want to go through surgery twice in one month. This surgery came with a hard recovery. I got sick and could not eat for the entire day and was very tired. When they did the surgery on my arm they had done a biopsy on my leg and everything had come back fine. However, this caused my leg a lot of discomfort and pain so I was really worried that a surgery on my leg would be much worse, but luckily it was not nearly as bad. I was grateful to find that everything was fine, the tumor that they removed from my leg was not cancerous. Unfortunately, the surgeries did not end there though.
The entire year of 2008, I did not have to get any surgery, but had to deal with my sisters medical issues for nearly the entire year. This year in September I was back up in Portland getting yet another surgery, again on my left leg, but in a different spot. This time though the surgery was considered elective because it was my choice. I had been in pain for quite awhile and was sick and tired of it. Prior to surgery I had to get another MRI, however this time it took over 3hrs as opposed to 45 minutes and was very painful. After waiting for what seemed like forever, but was really only a couple of months I was finally able to get surgery and put an end to the pain in my leg. This time I did not get sick when I woke up from surgery, but I woke up violently shaking. It was miserable, but I was able to leave the hospital the same day and was not nearly as tired as from the previous three surgeries.
Currently, I am looking at possibly getting another surgery on my left arm again. I also would love to have a nerve graft done on my left arm to possibly restore the function and feeling in my hand. I will hopefully get both of those done in the very near future.
However despite all this I am currently a collge sophomore pursuing a career working with children and wanting to make a difference in the world. I have learned to adapt to life without two fully functioning hands and am making the best of my situation.