After I found out that I had cancer (which I still did not know what kind it was) I was rushed off for appointments at MD Anderson the very next week. I had never even heard of the place called MD Anderson. nor did I know that I would get to know it so well.
I had many tests done and met many doctors and nurses and specialists. I was finally told that I had Osteosarcom; a bone tumor in my right distal femur.
My pediatric oncologist's name was Dr. Norman Jaffee. I later came to know that he was one of the pioneers in treating the type of cancer I had just been diagnosed with and made the discovery that just amputating the limb infected did not rid the body of cancer. In most cases the cancer metastasized (moved) to the lungs within 6 months of the amputation.
I began chemotherapy 2 weeks later. I had cisplatin and adriamycin at lethal doses. To give you an idea, one of my friends and his father came to visit me in the hospital one time and his father asked my parents what type of chemo I was getting. They told him and he just shook his head and repeated "cisplatin?" Yes, that was the one. He told them that when he was a student at MIT they had developed cisplatin and basically they mixed the most toxic things they could think of into one concoction and that was this chemotherapy drug that I was on. The doctor confirmed that yes, it was quite lethal and that basically they were going to bring me to the edge of death with this drug and then at the last moment, give me the antidote.
Cisplatin was administered inter-arterially, which means that instead of the medicine going through my veins, they went in (during a surgery) to the artery in the groin that goes down you leg and feeds blood to you bone and knee. The thought was that doing the medicine like that would be denying the tumor blood and directly feeding it chemo, thus hopefully killing it more directly. I had to lye on my back the entire time it was being transfused (6 hours) and then another 6 hours while I laid with bricks on my groin/pelvis to stop the bleeding when they took the tube out. By the last 2 hours I was agitated, my back was hurting, and I'm sure I was a complete joy to be around.... not! Haha.
Adriamycin was not nearly as intense. It was lovingly referred to as the Koolaid chemo because of it's bright red color. The first time I had it no one warned me it made you go to the bathroom the same color and I might have freaked out a bit. It didn't hurt or do anything, an occasional puke but other than that not too bad.
For the next four months this was basically how it went: I would go to Houston and get pretesting done on Wednesday, be admitted on Thursday, get all the chemo and other drugs to help with which made me sleep and woke up Sunday ready to go home. I've been told it is normal for teenagers to hole up like that and just sleep and I have also been told that they give you medicine to help children forget what is happening. It's probably a combination of the both.
Now, I have been told that I would wake up between Thursday and Sunday and have conversations and such but I never remembered them. It got me into trouble a few times haha. I eventually had to tell my parents not to let me talk to any of my friends until after Sunday because I couldn't remember what had said to them! We would then leave the hospital and drive the 4 hours home and I would be weak and sick for about 2 weeks and then I was usually well enough to go to school for 2 weeks and then the process started all over again.
At first it really didn't seem that hard. It sucked, that is for sure, but wasn't something I couldn't handle. Even with all the side effects, and boy oh boy did I have side effects. Even to this day, if there is a side effect to be had, I have it full force. So I had them all, nausea, vomiting (for which I was allergic to the anti nausea and vomiting drugs! I could only use benadryl for that) mouth sores, weakness, hair loss... you name it, I had it. The nausea was a funny thing. It wasn't like when you are sick and just feel sick all of the time. I felt pretty good, other than being so tired I could hardly stand, but really, not sick. Then all of a sudden I would sit up, grab the bucket, puke, and it would be gone again. I am still very thankful that it didn't feel like I had the flue all the time. Random throwing up I can handle.
The doctor told me it usually took about 10 days for your hair to start falling out. On exactly the 10th day, my hair started showing up on my pillows. What was weird was that it kind of hurt. It felt like when you have you hair going one way and then make it go the other way and you get that prickly feeling. But that prickly feeling was it falling out hahaha. It came out in chunks and I would wear a hat to cover the bald spots. By my second round of chemo I was over the whole hair thing. I was staying at my aunt's house the night before I was going to be admitted, my mom and aunt were talking in the living room and I excused myself to the bathroom. I remember looking into the mirror without a hat on and being able to see the huge bald spots I had and decided, it's all or nothing and since I can't go back to all hair, I'm going all in for no hair. I began to pull it out, right there in the bathroom! It ended up being a lot more than it looked like and it didn't hurt anymore. I pulled the sides out first, leaving myself with a Mohawk. I mean, I was never going to give myself a Mohawk for real so might as well try it when it's all coming out right?! HAHA. I kept pulling until there was none left and really sank in that this was real. I wonder still what my aunt or uncle thought when they emptied that little bathroom trashcan that was FULL of my hair. From then on I always had on a wig or a hat. I was not brave enough to go bald. Not even my parents saw me bald but maybe a handful of times.
Wigs were fun though! I got one that was really long and a strawberry blond color. It was made of real hair so I could curl it and everything. I remember the first time I wore it to school and a guy said to me, "hey, did you cut your hair?" HAHAHA!! Shows you how observant men can be! I also had a short strawberry blonde, a pixie red, and a shoulder bleach blonde.
Anyway, back to the meat of the story, after the first chemo the x-rays showed that the tumor was reducing and because it was in my bone I needed to use crutches so that the now hollowing bone didn't break. Whew, 3 months on crutches was intense, I think I became more efficient on those than my own two feet! As the time went on, my friends dwindled down to a handful. Everyone was very nice and friendly at school but there were only a few that would talk to me or come see me when I wasn't in school. Surprisingly enough, they were all my guy friends. I had no girl friends during that time in my life. For whatever reason, it was too hard for them, they didn't know what to say, or whatever, the guys were there for me.
December 2003 over Christmas break I had my knee replacement. The tumor was too close to my knee to only take bone so the whole knee had to be replaced. I was a candidate for a new knee, one that is fused into the bone so that it never has to be replaced! Which is great for someone only 16 years old. Brilliant! They told me that for 3 months after the surgery I would need to be on crutches still so that the bone could grow in around the prosthesis. "No problem," I thought, "I've already been doing that!" They would also analyze the tumor that they take out to see home much has been killed by the chemo. The x-rays and other scans showed that the chemo was very effective and looked like there was little tumor even left.
The doctors told me that after analyzing it they would decide how much, by percentage had been killed and that would determine what I had to do next. If the chemo killed 95% or more, then I would have 1 more round of the chemo I was already having. The thought being that it had killed nearly all of it with just this chemo and one more round would make sure none was floating around in my body. If it was 94% or less, We would try 2-3 new kinds of chemo and do 12 more rounds.
After my surgery my doctor seemed so happy and cheerful that they got it all and it looked great. A few days later they told me the pathology report came back. My tumor was made up of 3 types of osteosarcoma cells and 2 of them had been completely eradicated. The third type had not been killed at all but only represented 6% of the tumor. That meant that the percent necrosis (killed) was 94% and I would need to do the 12 more rounds of new chemo.
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