Where I Used to Be

Well, I have THE best news ever. I do not have MDS! All of the results eventually came back. It was the best birthday present! But the party we had was a close second. The weekend before my birthday we had a 18^th birthday/GED celebration at Gerber Gardens. It was truly a celebration of life, friends, and family. Thank you so much to everyone who helped or attended. It was more than I could ever imagine. I do have to admit, it took me awhile to recover, but it was worth it. Family from Oklahoma, Kansas City, and Connecticut even flew in to attend! I was so surprised.  We had a cake, cupcakes, candy, cake pops, dinner, music, purple and cream décor, flowers, etc. I felt so special and loved. Again, thank you to everyone involved.

I am still going to Mayo to receive treatment twice a week every other week, and to Phoenix Children's twice a week every other week. So, typically I spend two days a week at some form of a hospital. Compared to being there all of the time, I am thrilled with this new normal. I have reached the point where I am living my life and thoroughly enjoying it; school, friends, public places, and more! I even went to New York and visited Columbia University and New York University! There are still some stipulations, but most of them I have tried to disregard. I have not gotten sick so far, so I am going to keep going with this theory. I have learned in the medical world asking for forgiveness is much
easier than asking for permission. 

I am still on heavy doses of immune suppression. My body is so dependent on medication it frightens me. They are considering tapering on either the dose of Cyclosporine or the amount of Photopheresis I receive. The taper process would take up to December 2012. If we chose to taper the Cyclosprine we would drop in small increments every three months, depending of how my body reacts. If we chose the ECP, we would go to treatment twice a month, instead of four times a month. Although I am emotionally ready, I don’t know that I am physically ready for a drop in ECP, my flexibility in my fascia has improved, but it’s not 100% and the idea of stopping something before it has fully worked scares me. The doctors will make the final decision, but there is no right answer. That is the most difficult part for me as a patient. A lot of the decisions are judgment based; and like life, everyone has there own ideas of what’s best.

Physically I have been tired and sluggish this week (if only I had a dollar for every time I’ve said that). My hemoglobin continues to stay between 8.5-9.5. It isn’t low enough to be transfused (Praise the Lord!), but it is enough to make me feel fatigued. I usually take a nap every day (sometimes two); so we are still searching for answers to the big fatigue mystery. I started a new medication called Exjade to remove the amount of iron in my system. When you receive so many transfusions, like I did, you become overloaded with iron; which isn’t good for your organs.

I love quotes and this one seems to sum up how I feel perfectly, “I might not have arrived where I want to be, but I damn sure left where I used to be.”-unknown