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.