I've told my cancer story to so many people that I didn't realize before now that I'd never written about it here. It can be really mentally exhausting to discuss it sometimes because, even as cancer-stories go, mine doesn't have the nice, neat ending that other cancer survivors can give. I always like to hear those cancer-stories where some person, who was really saintly before cancer, gets sick with it and finds the courage to be strong for everyone else even while their body falls apart, only to be cured in the end and go on to live until they're 104 years old. If only I could have one of those stories like that, having cancer might not be so bad. Instead, mine is ugly, gets uglier, and is all told by a girl (me) who was never all that nice and sweet in the first place. Ah well! Such is life!
I was a college student when my cancer story began. I took a lot of classes each semester and this meant that on most days I had to walk around campus with a bookbag full of very heavy chemistry and biology books. I had been suffering from chronic back pain which I attributed to the strain of carrying around so many textbooks. I would get The German to rub the capsaicin cream (e.g. BenGay, Aspercreme) that I some times use for my arthritis pain on it and this helped ease the pain even though it didn't eliminate it completely. This went on for over two years but it never got so bad that I felt the need to go to the doctor about it.
It was springtime in 2002 when I came down with a really bad cold. I went to see the campus doctor who usually wrote out my maintenance prescriptions for me. While I was there, I also mentioned my back pain since I knew he specialized in Sports Medicine and might have some recommendation for dealing with it. Because he knew that I had Lupus, he was concerned that with my immune system problems I might not have a cold but instead/also have contracted Tuberculosis (TB), so he swabbed my mouth to test for it. It takes a day for the test results to come back and, since it was Friday and the clinic wasn't open on weekends, it would be Monday before he could see it. Because he didn't want to wait that long before he'd know, he wanted me to go and get a chest x-ray so that he could get a look at what was going on in my chest that afternoon .
I was a bit reluctant to get the x-ray because it would cost me a hundred dollars that I didn't want to spend just because it was a Friday. Besides, the lab was all the way across town and I'd probably have to catch a couple of buses and the streetcar to get to it. I called The German and he urged me to just get the x-ray. He said he'd give me the hundred bucks the next day to make up for it, so I went along with his and the doctor's advice. One of my best friends gave me a ride uptown and stayed with me so that I'd have a ride back to school too.
When we got back to the school, I gave the folder with my x-ray films to the doctor and waited while he looked at them. The lighted board where they hang the films is right next to the door between the exam rooms and the waiting room. Since the door has a big window in it, I could see the doctor viewing my films. I wasn't really all that concerned until I saw more and more of the staff going over to look at them.
After a long while, the doctor called me to the back. He showed me a mass on one of the films and told me that he wasn't sure what it was but it shouldn't be there. According to him, it was probably just some fluid built up around my left lung but it needed to be looked at by a specialist. He called the public hospital and scheduled an appointment for me to be seen at the respiratory clinic in three weeks.
When I went for my appointment at the respiratory clinic, they took more x-rays and scheduled lots of tests. After lots of testing, they couldn't figure out what was wrong with me, so they referred me to the rheumatology clinic. The rheumatology clinic determined that this mass wasn't Lupus-related so they passed me along to the neurology department.
By this time, it was late Autumn. At neurology, they decided that I needed to have a needle biopsy in order for them to get an idea of what this mass was made of. Looking back on it, I don't know if I should have done some research on what a needle biopsy is before I went in to have one. On one hand, I don't think that a person should have any medical procedure performed on them without understanding it but, on the other hand, if I had known what it would be like, I probably would have been a lot more afraid.
In preparation for the biopsy, they made me lie down on a table on my stomach. They put a topical anesthetic on my back and then, once that numbed my skin, they gave me an anesthetic injection. Even though this was uncomfortable, I was able to just grimace through it. I asked the doctor why they didn't put me to sleep while he did this procedure. He said that because he had to push the needle through my lung, he needed me to exhale completely and I had to be awake in order to do it. That definitely made me gulp!
There were four medical school students in the room with him. I thought they were just going to watch but they were there to lean down on my chest to help get more of the air out when I exhaled. I was hoping that it wouldn't hurt since I had received two forms of anesthetic but it didn't turn out that way. The anesthetic only took the edge off because when the doctor pushed the needle into my back, I could feel it slowly going through my lung. This was NOT at all pleasant. The fact that they had to do it four times in order to hit the right spot certainly didn't improve things, either. The procedure left me whimpering and in tears.
I wish I could say that the needle biopsy was at least really helpful but it wasn't. When the laboratory examined the sample, they found that it was mostly stromal cells which didn't tell them anything. At that point, the doctors decided I would need to have surgery so they could go in and get a sample of the mass. The neurosurgeon, a beautiful African-American woman, said she would also try to remove it completely at that time, if they could.
I went in for my surgery on December 6, 2002. The German's sisters agreed to take care of VanGoghGirl for me. My mother, my oldest brother, and The German kept me company at the hospital. When I woke up after the surgery, I was lying flat on my back with a bandage that started at the nape of my neck and extended down my gown.
When the doctors cut me open, they realized that the mass was actually a bony tumor (which was why the needle biopsy had been uable to extract a sample) and it wasn't going to be possible to remove it during that surgery. However, they did cut out a piece of it to send to the lab and then closed me back up. I had been told to expect the incision to be about three or four inches across. Instead, I had a fifteen-inch long incision going down the center of my back held together with thick black stitches from the partial thoracotomy that they'd given me. Compared to the pain I felt, the needle biopsy had been a cakewalk. In order to sit me up, they had to grip the corners of the sheet underneath me and lift it because directly touching my back was excruciatingly painful.
After spending about a week in the hospital, I was released. This was when I began to take narcotics. They started me out with two Percocet tablets every four hours and even that didn't eliminate the piercing sensation I felt down the length of my spine at all times. It took me about a month to get to the point where I could stand on my own and it was several months before I could bathe myself or go to the bathroom without help. However, it was only about three weeks after my surgery when the doctor called me in to hear about the lab results. That's when I was told that the tumor was a rare, malignant bone cancer called Chondrosarcoma. The tumor was attached to one of my ribs (on the left side of my chest), pushing into my spinal column and wrapped around the vein going to my heart. She told me that there was only one doctor in the state who might be able to help me and fortunately, he was located in New Orleans and willing to see me at his private practice.
Although I had hoped this surgery would be the end of my troubles, it was only the beginning of my fight with cancer. Fortunately, I lived to fight another round but not without any scars. Even though the incision healed well, I still ended up with a pale one-inch long indentation at the nape of my neck and a thin brown scar down the other fourteen inches of the incision site.
Before all of this began, I was a wispy 115 pounds and hadn't worn anything bigger than a size 5 since two weeks after giving birth to VanGoghGirl years before. I loved my body. Like a lot of girls in their early twenties, I practically lived in cropped tops and halter-top shirts. Why not?! I looked great in them. After my surgery, I just didn't feel good about myself anymore. Imagine going from constantly getting compliments about your figure to suddenly being "disfigured".
Of course, I can think about it rationally and say that I should only be glad that I had been in the hands of such a skilled neurosurgeon but it would be dishonest if I didn't acknowledge how much my depression was exacerbated by the outward effects of the surgery on my body. You can't wish away your cancer but if there are no visible signs of it, you can at least look at your body without instantly being reminded of what you've been through. Well, that's what I imagine would be the case. I don't know for sure because my first surgery made it impossible for me to ever have that experience for myself. The radiation that followed proved to be equally unkind.