Sunday, July 24, 2011

Where I'm At

Photo by Annie Gerber Photography

For the first time in a long time, I feel like I'm in a good place. I am being honest in saying that. But I'm also going to be honest in saying that I went through A LOT to be able to get to this point.

In the last several months, I've been overwhelmed with emotions I felt incapable of handling. In the moment I struggled to process my feelings, and was dumbfounded at the thought of sharing them publicly. I started writing for myself which is something I had stopped doing. At the time, each journal entry seemed so harsh and miserable. However; that was my reality. Looking back I realize there would have been nothing wrong in sharing that.

So, I will share some of them right now: I dread taking my pills every night; I put it off for hours. I resent getting infusions at clinic. For months I cried myself to sleep after finally getting my thoughts to slow down. When I see pictures of friends swimming or at the lake, I get jealous. I go to bed attached to tubes every other night that make it impossible to get a good nights sleep. I feel useless on days that I have no energy to help. I feel so alone some nights. In my right chest I have a Broviac and a port in my left; the lines make me feel abused and fragile some days (not to mention how difficult it is accessorizing them).

I'm sharing these with you not to make you feel sorry for me. I am sharing them with you to tell you that I struggle. Days rarely come easy. I fight with my emotions constantly. I've had to learn to embrace them in order to overcome them. I finally realized that it's okay to be vulnerable, raw, and honest. But most importantly I'm sharing this with you because I finally feel strong enough to say I made it through all of them.

I started a new treatment at Mayo Clinic to help my Chronic Graft vs. Host Disease. A quick biology refresher, GVHD is a side effect of the transplant. Basically it means Ryan(Graft) and I(host) are still butting heads inside my body. (Really, who is surprised at that! We are brother and sister; isn't that what we are supposed to do?) I was sent to Mayo Clinic to receive treatment called Extracorporeal Photopherecis (ECP). ECP is a process in which my blood is taken out in 4-6 cycles. In each cycle my blood is filtered, a portion is set aside, and the remaining blood is replaced. After the last cycle they take the portion of cells they had set aside, mix it with a medication called Psoralen, filter it under UV lights, and return it to mu body. The combination of the Psoralen and the UV light triggers something in my cells to teach my lymphocytes to recognize good cells vs. bad cells. It is a process that even doctors understand completely, but it has promising success rates. It is an eighteen month treatment. For the first month, I went twice a week, every week. For the next five months I will go two days a week, every other week. A port (permanent IV) was placed because the flow of my Broviac was not strong enough. Each treatment takes about four hours. I visit Phoenix Children's every other week for simple check up's and the occasional infusion depending on my counts.

Now for the good stuff! You probably won't believe me when I tell you all that I have gotten to do in these past few months! Three trips, two concerts, and lots of hanging with friends. For the first time, I have a normal hair cut, I got my GED, I enrolled in college, and I was the ambassador for a marrow drive at PCH and Mayo. I go into grocery stores (as long as they aren't overcrowded), I eat out (probably more than I'm supposed to, sorry Doctor Douglas), and I actually have energy. 

Somehow I had this illusion that when I was "healthy" again everything would go back to normal. My hair would grow back, my Broviac would be gone, and it would be like I never left. Boy, was I wrong! However; I am starting to get my life back, it's not the one I left behind two years ago, it's better. It fits who I am right now, in this moment. And it feels absolutely incredible.

Finally I want to finish with an experience I had the other day. It  was a moment of clarity for me and I hope it will help you understand where I am at as well. I was trying to escape a dust storm by wearing a mask and hiding in the bathroom; I was frustrated and worried. Someone asked me, "So is this how you are supposed to do it when you have a transplant?". My answer was the only one I could think of, "I don't know. I've never done this before. I'm doing the best I can." And that is exactly where I am at right now, doing the best I can in each moment. Living, not scared of what might happen, but excited at the prospect of what will.


  1. Carolyn, you should write a book! I love how I feel like you are explaining things to me; when I read this your voice just talks through the screen!!! Oh and I needed that biology refresher cause I kept forgetting what GVHD actually was :) I'm so glad that you have more energy and are able to hangout, it fills my soul with joy whenever I see you! I love you very much and feel so blessed to have you and all our friends in my life :)
    Love Corinne
    P.S. I've missed my favorite blogger! :)

  2. Uncle Vaden & GammieJuly 25, 2011 at 9:38 AM

    Watch out Columbia!!!!!!Here comes Ceci! Uncle Vaden & I thought this was a great
    blog. If we were grading it we would give you an A+. Thanks for being so honest and explaining things so well. We Love you very much! A+

  3. Wow I didn't know you were going through all of that. I'm sorry I really wish I could have known you were hurting so that I could have helped in some way. I am glad you are over it and living life now! On a positive note I am so so glad the new treatment is working!!! Anything is possible when God is on your side. I hope I am considered one of those friends you have been hanging out with because that would be a great accomplishment for me. PS I really do like your hair cut you rock it! PSS Woo go GED girl PSSS I LOVE the last paragraph you wrote! LOVE LOVE LOVE IT!!! I hope we grow old together and stay at the Biltmore Hotel from time to time and laugh at the youngsters walking around in robes. (well that might only be allan) I will love you forever, Chels

  4. Oh, Ceci! Words cannot express how very excited I am to see your beautiful face and be in the presence of your beautiful spirit! You are such an amazing person, and your knack for writing just makes me feel everything for you. While reading this, I cried sad tears, happy tears, hurting tears, and proud tears. You have been through so much, and I'm glad you feel that you're at a good place now. I love you soooo much and am so excited about your visit to Oklahoma coming up!! We'll have so much fun!! Love, Jena

  5. Cec! Just ran into Gammie and she told me about the blog update! I was so excited!! I'm so glad to hear things are improving :) In fact, I've heard some pretty crazy stories about you lately! Coning? You're wilder than I am! I always knew you'd beat the rest of us to college. I'm so proud of you :) You'll probably have to tutor me to get me there with you! Speaking of being proud . . . I'm still telling everyone with ears about how fast you learned how to drive standard! I look forward to our many more adventures together :) So glad to see you blogging again! You have an incredible way with words! Probably haven't heard that before, huh? Only a 1,000,000 times, I bet! Love you more than the fireman parade back in Rhode Island!
    Always and Dearly,

  6. Was so happy to see that you were back to blogging! Cried many tears reading this and knowing that such a special spirit was going through so many different emotions. Just know that you being "raw" just may be the inspiration someone else needs to hear to help them through a tough time! I am so proud of you on so many levels. You are an amazing woman, not that I ever doubted that you would be! We are so blessed to have an angel like you in our lives!
    Congratulations on your GED and starting college! WOOOHOOO!
    Lots of hugs, Mrs. Bray

  7. The McCord FamilyJuly 26, 2011 at 8:10 PM

    Hooray for Ceci! A: For blogging for us who miss you so much and feel selfish wishing you would blog... :) B: For getting your GED and C: For starting college!

    I have been able to keep up on your progress whenever Connor and I see your Dad, but it's so nice to hear from you! Thank you for your honesty and sharing with us. We think of you every single day and hope to see you soon!

    We love you Ceci!

    The McCords - Kim, Cassi, Taylor and Connor

  8. Just when I thought your writing couldn't get any better you amaze me even more! I think of you all the time sweetie! We should hang out again in the near future....congrats on all of your recent achievements! I'm so proud of you :)

    Love you!!!!!! Sammy Jo

  9. Oh, Ceci.....I am sitting here with tears in my eyes, wearing your "Have you emailed Oprah yet?" t-shirt and thinking how very blessed we all are to know you and love you. You are so real---thank you for sharing your pain and also your gain with us. I have missed your blogging--thank you for sharing again--we feel so deeply for you and your "Climb". You are such an inspiration. You look absolutely beautiful! I love your hair and pink is definately your color! Much love, Rexie & Kathy

  10. So glad to hear from you again. Prayers are with you and your family.