Monday, November 7, 2011

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 18th 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 d├ęcor, 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


  1. I love reading happy blog updates it makes me smile :) Ok i don't know how you do it but someone you get prettier and prettier every day! Like have you seen that first picture of you by the about DROP DEAD GOREGEOUS!!!!! Geez you need to start telling me your tips for beauty! I love you so much so so much! Your party should have made TV it was that spectacular! I want to relive it every weekend....although that would be a little difficult to set up every time :) but seriously you need to put up pictures on facebook so the whole world can say "Wow look at that hot babe!" Although I guess you don't need any more help getting guys do you...haha Well I love you from the bottom of my heart then all the way to the top (I don't really know if that makes sense but it was fun) :) Keep climbing

  2. It is so good to hear from you again!! I am so thrilled you had such a good B-Day/Grad party! I got to see a lot of the pictures from Jena. Hope the new meds help speed things up on recovery. I agree with Chelsea, you look great. Keep climbing, you are in our prayers constantly! As for naps, go with them when you can is my theory. Keep your chin up and keep smiling!! Joe

  3. I just love to look at the picture of you looking at your cake---I can read the extreme thankfulness and blessing you were feeling----words can't really express it, huh? But, the feelings you were feeling is why sooooo many people desired to be there for you. It was so fun to be able to come and be a part of it all. You have such wonderful friends---it was great to see all that love in action. Keep climbing! Much love, Rexie & Kathy

  4. Hi Ceci...

    Your birthday party was one of the most memorable events I have have ever attended because you are truly a remarkable, courageous and,indeed,compassionate young lady.

    Be strong in faith Ceci...

    God Bless...Gary, Laura, and Katie

  5. Loved, loved, loved the birthday party!!! And love, love, love YOU!!! I'm so glad I got to experience that wonderful fun-filled evening with you!! You looked stunning and so humble all at the same time!! Can't wait to see you again over Spring Break! Keep climbing, Ceci!! Love, Jena