Tuesday, January 15, 2013

Brand New Me

I hope you had a merry Christmas. Mine was wonderful. It was filled with family, I decorated everything in sight, did my Christmas shopping early, I had the honor of gathering supplies for a 60-man platoon in Afghanistan, and I felt good for the first time in months.  But I want to tell you how I got there….

I tried to just suck it up, to not complain, and that lead me to this mess I am in. I’ve got a million thoughts running through my head, I can’t quite manage to get everything out I want, and I've shoved everything deep inside. I thought if I skipped over angry, I could move on. I thought if I acted like it wasn’t happening, it would disappear. I thought wrong.

Last June, I decided it was time to move forward. I enrolled at ASU, and I was elated to follow my dreams of becoming a journalist. Everyone encouraged me, saying “School is good for you, it's normal.”

In August, I started school. Around the same time, we ended my treatment at Mayo Clinic called Extracorporeal Photopheresis. It was a seventeen month long treatment and it worked. The chronic graft-versus-host disease(GVHD) symptoms I was experiencing started to fade away. The tightness in my fascia (tissue surrounding my muscle) started loosening, and my liver functions got better.

In conjunction with that fabulous news, we were tapering on my immune suppression medication (Cyclosporine). Shortly after, I had a flare. My skin was inflamed, red, and itchy. My B cells were elevated and causing GVHD. We went up slightly on the Cyclosporine, and we started a new treatment called Rituximab. It isn’t approved by the FDA for chronic graft-versus-host disease, but it is the latest in the slew of medications they are experimenting with. It is typically used as chemotherapy.

Basically, it's job is to target and kill the B cells. It's infused into my veins over six hours, once a week for four weeks.  It was great, they pre-medicated me, and I would sleep for six hours while it infused. I was tired for a day or so and then I would be fine. Every week on Monday or Tuesday I would have a doctors appointment, on Tuesday and Thursday I would go to school, and on  Friday I would have my six hour infusion. Sure, I was busy, but things were great. I was at the doctors less, and I was going to school!

After the infusion, I noticed a few bothersome symptoms.  Days later, the symptoms escalated. I was extremely achey, having black outs, and could barely stay awake. I had to get magnesium infusions every other day because my levels would drop critically low. I was sleeping about sixteen hours a day, exhausted, in pain, getting treatment, and going to school. 

I went to the disability office at ASU to make sure that I would have support if I needed it. Basically, you just notify your teachers so they are aware that you have a legitimate problem in case of an emergency. I never used the service at Chandler Gilbert, but I wanted to have it in place in case things got out of hand. Robin Roberts, co-anchor for Good Morning America, just had a bone marrow transplant and GMA couldn't be more supportive of her journey to good health. I thought that if a company with millions of viewers could understand, surely my teacher to introductory journalism would. I was mistaken. I got a response that read, “Journalism is a competitive and deadline driven field. Excused absences aren’t allowed. " 

I was too sick to drive to school, so my Dad drove me. When I tried to do homework, I would fall asleep. I would go from the hospital to class. I was bandaged from lab draws, and a bright red allergy wristband and hospital ID peeked out from my sweater. I would get bad news from a doctor, and twenty minutes later, I would walk into class smiling. I was desperate to be happy and normal. It was good for me, right? I hid the fact that I would cry on the way to school, wipe my tears, and walk inside. Or that I was throwing up the night before. My school bag was a mess; it drove me crazy. I was "the girl who carried mints and gum". Little did they know it was because I have a dry mouth from chronic GVHD. I kept heat packs in my purse to soothe the pain.  I wore jeans when it was one-hundred degrees out because I was hiding legs covered in scars. I walked into my class everyday, out of breath from the stairs, and stressed because I hadn’t done my homework. I was trying so hard to do everything. I wanted to be a good student, keep my room clean, do the dishes, eat healthy, take my pills, and go to doctors appointments. I was failing. School was getting fifty percent of my attention and my health was getting the remaining 50 percent. I hate doing things halfway. My health suffered: I was skipping medication, staying up late, ignoring symptoms, and sleeping through alarms. I was a mess. Everything was astray and miserable. I would be rushing out the door to the doctors office and forget my pills, drop my notebook, arrive late, with wet hair, nauseas, and in pain. While we were waiting, I would try and finish the reading assignment for that day to be prepared for the daily quiz.

One day, for my English class we had to check out five books from the Library, which is located in the basement, and get them to class on the second floor. I sat in the library with my five books, and text my Mom. I could barely manage to get to class as it is, how could I carry five books up the stairs on top of it? In another class, a teacher said that there were no exceptions for midterm time slots. I had treatment that day, and I had already postponed the infusion once for school. So I got up at 6am to take the midterm and I received chemotherapy from 8am-4pm. I missed one day of class the entire semester because I was giving a speech at Phoenix Children's. 

I got a B.  It was the first B I have ever gotten. Oh wait, no it’s not, I got a B in 9th grade because I had to drop out of high school. Another reminder of MDS. That is so not me. I get A+'s. But then I think, who am I anymore? I haven’t been the girl who got A+’s since 2008? Am I even that girl anymore? Someone told me I was “being mean” these days, and speaking my opinion a lot. I have just started trying to be honest. People aren’t used to it, and they don’t like it. Because I used to let people put me down, while I smiled and apologized. They told me “That's not like you.” 

I’m not that little blonde girl who let people take advantage of her. My room is messy, I leave the house in sweats, and without makeup. There are stray papers in my purse, every once in awhile a curse word slips out, and I got a B. That little blonde girl would have never done any of those things.  But does that make it wrong? Just because I grew up and experienced a lot doesn't mean that I am no longer me. I don't know exactly who I am, but I've experienced things and I've grown up.

I don't know exactly who I am, but I know that I don’t want to be mean, but I want to be honest. I want to be comfortable in my own skin. I don't want to worry about what other people think. I want to get straight A’s. I want to feel alive, and I want to do what makes me happy. But can I have all that at once? Do I have to sacrifice something? I don’t know. But I am trying to do too much; I am trying too hard. I am so afraid to let life pass me by. I keep fighting to be normal. But I am done fighting for that.

I am tired of hiding the fact that my life is different. I don’t want to complain all of the time, but I don’t want to live two separate lives. I have to find a middle ground where I can be myself without dwelling in the past. I am going to take this semester off. I will go back to school- I love school, and I will make a great journalist someday, when I can meet all the deadlines. But right now, I need to take some time to enjoy my life, to heal, to take care of my body and soul, and be happy. I need to find the new me, the one God intended for me to be. When I am ready, I’ll get back in school, and I’ll be the best me that I can be.

I love music, it's therapeutic to me. My playlist is like a mood ring. So, I thought it would be fun to help you understand where I am at in my journey by doing a "theme song" for each blog. It will be a song off my playlist that I listen to in the car, when I get ready in the morning, when I'm having a bad day, etc. This blog is "Brand New Me" by Alicia Keys. 


  1. Carolyn,

    I know I don't know you other than online, but I see the passion you have similar to the passion I saw with your mom when we worked together. Your passion in your writing was moving, and in a way I think I can some what feel your frustration. Now I don't want to pretend to understand what it's like to be sick for years like you have, but I think I may understand a small percent.

    I went to school to be a pilot. I got all the way through my commercial pilots license. Then I started getting really violent vertigo. Went to doctor after doctor and one even told me to "Your just going to have to deal with it" when I told him I didn't want to give up on trying to find a cure. Flying was my life and I didn't want to give up on it.

    I then moved to Phoenix and the vertigo appeared to get better. I got a job with Southwest Airlines. It appeared that maybe it was going away, but then a few years later it go worse in fact really bad.

    It was hard to work, and some of my managers were being really insensitive similar to your professors. One even had the nerve to ask if I was "faking" it.

    Anyways, I know that my health condition is nothing like what you've had to go through, but maybe in a small way the frustration were feeling might be a little the same. Don't ever give up on your dreams! You are a talented writer and If it means anything I use to work in broadcast journalism before moving to Phoenix.

    Like you I was an A student through high school, but as distractions happened in my life those grades become more difficult to get. Looking back on it, I realized I still am and will always be an A student. It may not reflect on my report card, but I know in my heart I am and you are too.

    Seriously don't ever give up on your dreams. Really you already are a journalist now. Keep writing your blog, keeping sharing with your readers your vision. Keep inspiring people through your words. You never know who might read it. You never know who you might touch.

    Keep up the great work! Tell your mom I said hi and I really hope I can meet you in person one of these days!

  2. hey Ceci:
    Just wanted you to know it's hard for someone to be normal and ordinary when they are already extraordinary!! My thoughts on life is that it has as much to do with heart as it does with brains. like I have told you before we aren't required to be perfect just be honest and true with ourselves and God. Hope to get out that way sometime in the next few weeks to see you and your family. Joe

  3. Thank you for being honest, Ceci. I want to know your true thoughts and feelings. Even though you may not be that little blonde girl who makes A+'s right now, you're still a child of God and you're still so incredibly loved. And that's what really matters.
    Love and Prayers as always, Jena

    P.S. Maybe you need to find the "new you" in small town Oklahoma! ;)

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