My Biggest Regret

Well the good news is that the worst is over. But I hate to say that it isn't a pretty picture from here on out. There is still a lot to the story.


Everyone knows that hindsight is 20/20. But damn- I really wish I had a premonition or something. My family and I went to St. Maarten right before I was going begin university. We were all so excited to get away and soak up the sun. Now the transplant team had warned me that I needed to stay out of the sun because it can make you get GVHD. We bought a UV suit (long sleeves and pants that kept out UV rays) and a giant hat. I stuck to the shadows. I did what I thought was right. But in the end it was all wrong. And if there are any BMT patients reading this- I swear- do NOT go in the sun.

While on the vacation, I began to get very lethargic. I just wanted to sleep on the couch instead of enjoying the island. When I got home, my skin started turning very red- like lobster red. Soon my mouth began hurting. I had sores all over and I couldn't eat. My skin started peeling off in large chunks. I had gotten GVHD of the skin and mouth. So we started up with more immune suppressants and steroids again. But this time it was chronic instead of acute (like during my intestinal GVHD). I had done it to myself and it is by far my biggest regret of my life.

Soon I began my freshman year of college. I met my AMAZING roommates Caitlin and Eula. They were great. They saw my centimeter long hair and my odd body shape, but they accepted me as a sister. But things were not great for me. I had become so itchy- we still have no idea why. I had to take high doses of sleeping pills to sleep because of the itching and I would make my mom stay on the phone with my while I laid there scratching. To this day, I still think that extreme itching is far worse than pain. And the peeling skin was bad. It came off so thickly on the bottom of my feet that it made it hard for me to walk. {sorry for the graphic details}

Then one morning I woke up and my eyes hurt so badly. I had no idea what was happening. Luckily, Eula had some eye drops and let me use them. It was such a relief. I made it to the eye doctor finally and was told I was no longer producing any tears. I had GVHD of the eyes.

I don't know how to express how disappointed I was. I felt like it just kept piling on. First the skin (which I was so self conscious of), then the mouth (making it hard to eat), then the eyes (making it hard to see). My eyes had gotten so dry that I had formed patches over my cornea so that everything was blurry all the time. Ever since then I have had to put in eyedrops every 15-45 minutes. It never went away.

I was getting weekly infusions. To do these I had to have someone drive me because I would get an IV in the crook of my arm, get a ton of Benedryl so that I didn't react to the blood products, and get an infusion of IVIG and high dose steroids. This usually was a 5 hour process. It was pretty much always my sisters who drove me- Carina and Brandan. And a lot of the time (especially when I first had to do this), they would stay with me for the whole 5 hours. And I would always pass out from the Benedryl. So they would bring their work and quietly sit by me as I snoozed, go get me lunch, and gently wake me to eat something. Then they would drive a drowsy Genevieve home. Once a week. For five hours. FIVE HOURS. Seriously- my family is the best! And this went on for a few years. I have the scar in the crook of my right arm to prove it.