When I was 27 years old I moved to Japan to see if things would work out with the man I love. ***Spoiler Alert*** It did. I am so fortunate that I did because if I hadn’t been with him after everything started to go downhill, who knows how things might have turned out. I’m not sure just how long I had been in Japan when I got sick, but it had been at least a few months. If I got out my passport I could narrow it down to a week, but it really isn’t that important. While in Japan we decided to take a trip to Guam. While there we were playing water volleyball and when I dove for the ball I remember feeling a pop. That’s about when everything started to go wrong. The pain wasn’t that bad and I honestly thought that I had just pulled something. But after a few months of pain it became apparent that it was more.
I began having spasms in my chest. They tickled, but hurt at the same time. The pain only got worse as each day went on. A friend recommended a chiropractor and I thought, why not. It seemed to help, but only for a day or two. Then I went back to visit my family. My father was retiring from the Navy so I was staying at my parents’ home for a few weeks. I remember waking up one morning and as I went down the stairs, I slipped. I hit the bottom three stairs with my rear end. Thunk, thunk, thunk. It hurt, it hurt incredibly badly. This did not make the rest of my visit very pleasant.
After returning to Japan, I went to the chiropractor. I told him that I had fallen down the stairs and he insisted that I had x-rays done before he did anything to my spine. (Something to be noted here, in Japan chiropractors are not allowed to use X-rays, you must bring them in from somewhere else.) He was afraid that I might have a compression fracture. Since he couldn’t use x-rays, he took out a tuning fork, like the kind you use on a piano, and he hit the fork on the table and placed it near my spine. He continued to move it lower until I let out a scream. The x-rays later proved that was where my fracture was. Apparently this little trick is taught in chiropractor school, but even the doc’s teacher was surprised to find out that it actually worked!
My husband took me to the hospital and they did x-rays. They verified a compression fracture, gave me Motrin and told me to stay off my feet. About two weeks later I got out of bed and collapsed. I was in so much pain that I couldn’t even hold myself up. This earned me another trip to the hospital. This trip was not very fun at all. The roads were full of pot holes and with every bump I felt so much pain that I would vomit. When we got to the hospital they informed us that the orthopedic doctor was not in. I sat down in tears, I was not going back home. They finally found someone who would see me. They decided to order an MRI. Unfortunately I had to be transferred somewhere else for this. They took me by ambulance and my husband followed. While in transit it was learned that the MRI machine at our destination was broken so we were re-routed. My husband did not know what hospital we were going, but attempted to follow the ambulance. We were separated as we could go thru red lights and he could not. I was at the hospital for a few hours alone while my husband tried to figure out where I was. In that time they did an MRI and then a full body scan. The more tests they ran, the more concerned I got. I became incredibly stressed out and it did not help that I only knew about 5 words in Japanese and none of them would help me in a hospital setting.
Eventually someone came in, they gave me an IV with saline and Motrin (They don’t like to prescribe heavy drugs it seems) and then they gave me some valium. Due to the language barrier, they were not sure if I was in pain or if I was anxious. I was both. A doctor finally came in and told me that they found a tumor on my spine. This was the worst possible time for me to be alone, I cried for what seemed like an eternity. Eventually my husband found me and when he got to me I told him that they found a tumor. Apparently they had not informed him what they had found. Because he thought that I was just stressed and making a joke, so he did the Arnold Schwarzenegger, “It’s not a tumor” line. He was so lucky I couldn’t throw anything. We can laugh about it now, because it’s funny, but it certainly wasn’t funny in that moment. It really was a tumor. I was in a foreign country where I didn’t speak the language, in pain, and had just been told that I had a tumor on my spine that just might be cancer. It was turning out to be a very bad day.
Since then, my body has been ravaged by an illness that most people have never even heard of. I have had 5 spinal thoracic surgeries in 6 years. One of these also happened to be an abdominal surgery as well. My back looks like the start of a road map and my stomach looks like someone sliced right down the center of it, probably because someone did. I have scars from a multitude of chest tubes on both sides of my chest and stretch marks from the multiple occasions of rapid weight loss due to the sickness associated with radiation, and surgeries. I have had multiple thoracotomies, a rib removed, half my right lung taken out and a vertebrate removed and replaced by a metal cage filled with crushed up bits of part of one of my ribs. Oh, and then there is the tracheotomy scar on my neck. Did I mention that I’m only 35 years old?
I have eight years of stories about living with GCT. Some of these stories are funny, some scary, some strange, and some are just plain terrifying. This was my first story, this was my first day. This was the day that changed my life forever. I’m going to tell you my best stories. So welcome to my life of living with Giant Cell Tumor. Hang on; it’s been a crazy few years!