It was in North Carolina that I developed the kidney disease that still plagues me today. After an extremely traumatic kidney biopsy that involved a needle that wasn't long enough and not near enough licocaine, I was put on all kinds of heavy duty drugs like Cyclosporin and Imuran in an attempt to avoid chemotherapy, but they did not work. It was also discovered (the hard way) during the biopsy that I had a horseshoe kidney. This didn't make me happy at all, because my mother also had one, and she died at 37 because of kidney failure. I started Cytoxan chemotherapy in the summer of 2000. Because I lived so far from the hospital, I had to stay overnight every time I had a treatment. They took hours, and I later learned that they didn't take all the steps they could have to protect me from the negative effects of Cytoxan.
Cytoxan can cause some severe bladder damage. I have developed Trigonitis and bleeding in my bladder, which has been attributed to my years of chemotherapy, but they don't know for sure.
I was given the cheapest nausea medication they had, and it didn't work. I spent my first 6 months of chemotherapy in the bathroom. I would tug on my hair and get handfulls at a time. I was so depressed from the chemo, the illness, losing my hair, and where we lived that I'm surprised I made it out of there alive.
Once a month for 6 months...that's how often I had the chemo. Then it was supposed to be every 3 months for another 18 months, but it didn't work that way. December - February was supposed to be my first 3 month period, however in January, I started getting very sick. My feet and face were so swollen, I think I had 20 pounds of water in me. I went to the emergency room, and my kidney function was very poor, so I was admitted and put on IV pulse therapy steroids (1000 mg a day) and given another round of chemo. After nearly 3 weeks, I was released.
In March of 2001, we moved to Upstate NY. Because of the lapse in treatment, I was admitted to the hospital again shortly after we arrived in NY. Only here, I would finally find a team of doctors who knew what they were doing.
1999 - 2001
2001 - 2003
2003 - 2006
2007 and Beyond
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