Friday, April 30, 2010

Crazy Week

It’s been a week full of extreme up’s and downs emotionally. Which I have the steroids to thank for. Or at least to blame. I have done more this week than I have in a while, but it feels like less.

We had clinic Monday morning. My magnesium level was low and Dr. Douglas claimed I had “earned” a magnesium rider. I quickly pointed out that I did nothing to earn this. They acted as if they were doing me a large favor in giving me this infusion. Needless to say I wasn’t in the mood for the small talk and frustration of spending my day there. But I did and felt better afterwards. My Tacro was upped once again and the steroid dose remained the same. The day brought no extraordinary news; good or bad. Which should be looked at as a major blessing.

Tuesday I woke up at 5:50am and made chocolate chip muffins. I was headed to get my license. My instructor’s name was Chuck and he willingly wore his mask and asked me about MDS during the test (which kind of worried me). I was close to asking him if I could just focus on driving, but refrained. Who knows what I actually said during the conversation. I was dealing with nerves. This was the first thing I had gotten to do, and I didn’t want to mess it up! I passed.

My first big drive consisted of dropping my Mom off at a store front and parking alone. It was actually exciting! We headed to Ryan’s game later that day at Yavapai College. I was feeling sheer joy of the open road, beautiful scenery, and good music. We arrived at the field and it was so windy!! Since when did Arizona turn into Chicago? It’s felt like the windy city since the day I was introduced to the idea of avoiding spores. I sat in the car watching the game from afar. Ryan didn’t pitch; so I didn’t mind. It was hot though! My lack of hair wasn’t bothering me that hour.

Wednesday, the adrenaline high from my license seemed to have worn off. I was in the mood to pick fights. I wanted to say something mean and sarcastic, but I didn’t. So I would try to hold my mouth shut and that came across as mean. Even though it’s nice to know it’s the steroids it’s really frustrating. Why would I want to be mean to my family who have been incredible and won’t say anything back? I can’t count the times they’ve had to bite they’re tongue so I don’t feel bad.

Thursday, I had clinic . I asked about Allan’s graduation and was laughed at. I told her I had been expecting no, but that wasn’t going to stop me from asking. We waited a significant amount of time for labs to return with outstanding results. My hemoglobin was a “manly” 15, ANC- 9,636, and WBC-10.7. My liver enzymes are decreasing, slowly, but decreasing. My tacro and steroid doses will remain the same as I am still experiencing sypmptoms of GVHD. I got in the car and was so thankful, yet I started crying. The health conscience, mature Carolyn needed to hear that my counts were improving. I needed to hear that my hard work and effort was all going to pay off, but the sixteen-year old Carolyn desperately wanted to hear that freedom was soon around the corner. At the rate we are going I am looking at about four more months of severe isolation. I know freedom will come. But it still hurts. People always throw the “but” word in. “But, Carolyn, this is just two years.” Or “Freshman and sophomore year weren’t that great anyway.” I need to experience that on my own and right now I don’t have the opportunity. I hear it from the people who are living their lives and their dreams while I attempt to sit on the couch and plan mine.

As I got in the car and said thank you because I truly am grateful for the beautiful blessing I’ve received, a second chance at life, I prayed for an open heart and mind. And a patient faith and love that would help me find myself in this world.

I assume by now that you know I’m a big fan of Oprah. Today, is “National No Phone Zone Day”. I just signed the pledge after watching her show. Just like the amount of donors in the national marrow registry this is something we have the power to control. You can join at A phone call isn’t worth a life.


  1. Sweet Girl, I know my day has been different than yours, I haven't been fighting for my life for 14 months and things just don't go the way we would like them to, but this has been one of my saddest days since Grandpa has been gone, nearly 4 months. Things have been so hard today. Your Mom, irrigating, Uncle Randy mowing the front lawn, lots of phone calls from former church members telling me what a great Pastor Grandpa was, Tylie wanting in the house so bad today.Ceci and I are sad today and we can only imagine Grandpa what you are doing!!!

  2. Congratulations on passing your driving test! I feel happy for you and also sad for you.....four more months of severe isolation.....yuk. All I can think to say right now is keep blogging and praying and we'll keep reading, responding and praying. Much love, Kathy & Rexie

  3. CONGRATS on passing your driver's test. Today in Relief Society (our women's organization-organized in 1942 in Nauvoo, Illinois and today is the largest women's ortganization in the world), I am giving a lesson on "Influential Women." For a month I have pondered and prayed about Women who have touched my life. Of course my dear mother leads the list and my grandmother and my ancestors who sacrificed so much to come to this free land. There are my teachers and friends and associates and more recently Rhonda and Carolyn Christenson and Pam Gerber. You, my dear friend have given me better perspective. How often do we just jump in the car, go to the mall and shop--and we don't even stop to be grateful about our "freedom?" You have helped me stop and COUNT MY BLESSINGS and pray more. A prayer is not said in our home where you are not mentioned. God must be a lot busier since so many prayers are going heavenward because of you. After my awful divorce, another friend and I would greet each other, smile and comment, "Do you think we can be good for another half hour?" (Our earth life is probably only 2 hours in God's time). So, dear Ceci, can we just be good for another few seconds until you are free to do the things you so desire? Yes, we all have those down days, but the really good thing about that is that there is no other way but UP. Yes, the climb is hard. . . . .but it is worth it my dear friend. Lots of hugs and love from WA! Richard and Tamara

  4. YAY BABY HITTING THE ROAD! Is it everything you ever dreamed of!? You are the strongest toughest girl I know! I know this must be hard for you and you hate watching from the sidelines but I know this is just God's plan and he really does love you! Ill keep you updated everyday so you dont miss anything :) church eat open presents! eat and now i cant get off the couch!! haha what an exciting day! Hey I want to let let you know... I LOVE YOU!!!! and you better not think otherwise EVER! your my best friend!:)!