Wednesday, September 12, 2012

The Summer of The Peach

Sauna Suit Occlusion
I think about blogging at least once a day. I miss it. I miss what I learn about myself as the words poor from my heart and the deep-rooted emotions flow. When I write, the things I've forced myself to choke back, thoughts I've denied myself, and the truth seems to come out whether I'm willing or not. I miss your inspiring comments and your hopeful responses. I wish I could share each silly moment and laugh that fills my heart, but I also wish I wasn’t afraid to share every gory, down and dirty moment as well. I’m angry with myself for stopping, but at the time, writing a blog became yet another thing this damned disease forced me into doing. But I realized that I could have it all back. And this time, I'll certainly appreciate it more.

At the Floyd's wedding
Like usual, I don't really know where to begin. I'd like to pick up where I'd left off, but I'm writing a blog, not a novel (for now, at least). So, a recap seems most fitting. I don't want to linger in the past, but I want to show you how I got here.

I finished at Chandler Gilbert Community College with a whopping 13 credits to show for a years work. I finally got off the magnesium infusions in April, and had my Broviac removed! It was and still is one of the things I am most grateful for. It makes my life a little easier, a little more normal, and whole lot better.
At the Ellen Degeneres Show
The beginning of this summer was incredible, I was starting to feel better and I was gaining energy. Life was blossoming before my eyes. In between Mayo treatments and Phoenix Children’s appointments we went to Hawaii, Huntington Beach, and Burbank, California. It was extraordinary. We visited the most serene botanical gardens, saw a taping of The Ellen Show, and I read twenty-two books. I was on cloud nine. I moved into an apartment closer to Arizona State University with my brothers. It was a step of independence and freedom that has allowed me to move forward. I'm with my parents at appointments at least twice a week. My Mom still does my laundry and helps me with grocery shopping. It's not something I'm proud to admit. You're probably thinking, "Wow, how lucky her mom does her laundry."And you're right, I am very blessed, but I don't think people understand that if I could do it on my own, I would. For me to be able to take that step of independence, there are things that I need help with. Each day is work, getting up, getting dressed, taking pills, eating, and keeping the house clean takes a lot out of me. I have to take naps and rest frequently. I sleep over at my parents’ house when I don't feel good. I know me living away is harder on them, they’ve been on the receiving end of several 2am “help me” phone calls, its a longer drive, rent, and the list goes on. At times, I think it would be easier just to live at home. But it's been so good for me emotionally. I absolutely love my little apartment, I am so happy there, and so grateful I was fortunate enough to have been able to take this huge step.
Abby & Me 
Everything was just peachy this summer. Sadly, the peach rotted. I got a virus that we believe lingered for months, my energy started fading, I started getting painful cramps, and I became short of breath. In the last two months alone, I've had my port removed (due to a puncture in the frame from overuse) and a new one put in. I've had four unbelievable rashes, and lots of dermatology appointments. We started a new treatment called sauna suit occlusion. 
I made the taper all the way down to .2ml twice a day on my Cyclosporine (immune suppression). YAY! I dropped my Extracorporeal Photopheresis treatment twice a month instead of four times (double YAY). Almost immediately experienced a flare of the Graft Vs. Host disease in my liver, skin, and cell count. I was just a few weeks away from being off immune suppression when I flared. Now I am back to .5ml twice a day on my Cyclosporine. It took me a year of hard work to taper that low and a measly day to go back up. I did a short burst of steroids and started Etanercept shots, all in attempt to fight the Graft vs. Host Disease. If you're catching the pattern here, my health is up and down.
I do have good days and even great days. I was accepted to the Walter Cronkite School of Journalism at ArizonaState University, and began taking 7 credits this August. I love shopping, cooking dinner, eating out, and going to the library. I frequent Starbucks, and get massages from Art of Healing several times a week. All in all, I have more energy than I did a year ago. But as I try and return to a more normal life, the energy I have isn’t sufficient. Everything is hard work. At the end of the week, all I have energy for is Redbox and take out. It's my way to unwind and relax. I wish so desperately I was more social, but it seems like by the time I get everything finished I have to; I just need to relax. It leaves me feeling lonely a lot.

At Mayo Clinic
Most days I envision myself hopping on a plane, running away from all of my problems. I want to be living in New York, interning for CBS or Harpers Bazaar , trying new cafes, and taking bubble baths in my black and white studio apartment. But the problems I have, are the kind you can't run away from. So, I’m here, trying to wrap my head around the concept of being on Cyclosporine for at least another year. I’m enjoying the sweet little moments like eating fresh strawberries for the first time in years, cooking enchiladas, and taking trips to Aunt Ro’s in Kansas City when I can.

I feel so guilty complaining about my struggles. I am MDS free. I am better. I have so much to be thankful for, but my struggles are still hard. I spend more days at the hospital than I do school, more hours asleep than I do awake, and have more heartache than bliss. I thought by now, three and a half years later, my fight with this awful disease would be over. I thought that one day I would wake up completely healthy, rested, and happy. Maybe it was naïve of me. Maybe it was unrealistic. But everyday I spend at the hospital or trying to muster enough energy to perform daily activities; I find myself angry. I wholeheartedly believe that there is a reason behind each struggle, and that makes it a little easier. But I am human, and my heart aches for the experiences I’ve lost, and the pain I continue to endure.

P.S. I apologize for all of the formatting issues with some things spaced, some indented, and some to the right. I have yet to figure out how to make my blogspot look respectable with pictures in it.


  1. Carolyn!! I am so very happy you blogged today! Hearing what you are up to is always the best part of my week! Did you know that my favorite pass time is watching Redboxes? And eating? So if I'm in town, we should do these together! A little pazookies, a little Bridesmaids . . . A little party! This journey has turned out so much longer than I think anyone would have imagined. But please know, you are never ever alone. Whether it be a snapchat, a phone call, a skype sesh, an emoji jam, a movie night, I am there. I love you more than a fireman carrying a baby while riding a dinosaur at U of A to go to Starbucks on a cloudy day!
    Always and dearly,
    Karissa Sorensen
    #1 Fan, #1 Stalker
    P.S. I loved the format! It gave each paragraph a little character!

  2. Ceci,

    This posted touched me so tenderly. You are a beautiful writer. You are a beautiful woman! And such an old soul. Your wisdom comes with the growing up you had to do so young, but let me tell you my beautiful friend, these trials are turning you into a remarkable human being. :)

    I come home next week and will be there for 10 days. I would LOVE love love to see you.


  3. Ceci, thank you so much for blogging. It feels so good to enter your world again. I want to know your ups, your downs, your pleasures, your fears, your dreams, your nightmares, your strengths, and your weaknesses. Knowing all these things makes me feel closer to you and gives me more specific ways to pray for you. With all you've been through, and even at such a young age, I'm sure it feels like you have already lived a lifetime. Not a day goes by that I don't still ask God for a miracle of complete healing for you. However, until that day comes, I pray for peace and guidance. You are such a special girl, friend, and cousin to me. Love you lots, Jena

    P.S. I love the pic of you and Abby. I'm jealous of Abby because she's with you, and I'm jealous of you because you're with Abby! ;) I know you have to love having Rick and his family so close!

  4. Thanks, Ceci, for sharing your heart with us again. We have missed you. You are such a remarkable young minister to each one of us. We want to feel your pain and anger with you and we love to rejoice in the good times with you. You are such an inspiration and your wisdom goes well beyond your years. Keep climbing and keep blogging. We love you! Rexie and Kathy

  5. Yeah!!!!! So glad you blogged again! For the longest time I checked your site every night before I'll be checking again! :) Love the update and hearing your strength. Even when you feel so very are such an encouragement to the rest of us for the courage and determination you have each and every day. We love you, Ceci!
    Heather and the Driggers Family

  6. I missed this so much!!!! I miss your beautiful words! Hey you sound like me! I go home on the weekend and my mommy does my laundry. If she keeps offering then hey I am not going to object! You are so amazing in every way. You may not think you do a lot but you do! I could never be as strong as you. Car you don’t realize how truly inspirational you are. I want in on these redbox nights! I would love to sit there with you and just be there. I miss you a lot and I hope that everything will get better from here on out. But I am always ALWAYS here! I love you bestfriend.

  7. so good to hear from you Ceci!!! we love you and love hearing about how and what you are doing. thanks for sharing!
    the McCord family

  8. so good to hear from you Ceci!!! we love you and love hearing about how and what you are doing. thanks for sharing!
    the McCord family

  9. so good to hear from you Ceci!!! we love you and love hearing about how and what you are doing. thanks for sharing!
    the McCord family

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