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 9^th 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. 

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.

My Wish

Where do I begin? How about being treated like a princess, shopping at Macy's, riding in a limo, or ice skating in the magical Rockefeller Center? And that is just the tip of the iceberg on my trip to New York City.

Let's start at the beginning. When I was first diagnosed, I was visited by a lovely couple who generously volunteers their time to Make A Wish. They asked me if I could have anything or go anywhere I wanted, what would it be? My wish was one I had thought about. Actually, I had stressed about it for days,  asking myself over and over again "What is your biggest wish?" I am so blessed with wonderful family and friends, passion for life, strong faith, and a second chance at life. When it hit me, I was the most excited I'd been in months. I wanted to inspire people to join the National Marrow Registry on a national platform. It's the thing that brings me the most joy, knowing that maybe, just maybe I made a difference in someone elses' life. I will admit a trip to Bora Bora, meeting Justin Bieber, and shopping all passed through my mind, but absolutely nothing made my heart happier than the thought of spreading the word about the need for donors.

This past December, I received a phone call telling me my wish had come true. My family and I packed our bags and were headed to New York City compliments of Go Daddy who sponsored my wish. They gave us a thick itinerary packed with sightseeing, hotel details, limo rides, and so much more. My Mom, who is always in charge of travel plans was stunned that she didn't have to plan a single thing. Every little detail seemed to spoil my family and me. We were picked up from our house by another Make-A-Wish volunteer, in his limo. I was one of 2,000 kids he had picked up over the years. Even just on our way to the airport I was inspired by his generosity. We arrived at the hotel in New York and met up with Aunt Ro. I had thought about this trip for so long, and I couldn't have imagined it without her.

The next day we went to Macy's. They had a huge hand in helping make my wish come true. To my surprise, we were escorted into a room where we met the loveliest Macy's employees, Allison, Christine, and Kim. They had picked out clothes for me to try on. They were giving me an outfit to wear for the actual interview and one to wear around New York City. Honestly, that in itself was a dream come true! There were racks of clothes and shoes in my size. We met the most amazing employees, who were so gracious and welcoming, not to mention they had AMAZING taste. They spent there entire day helping me, after we picked out the outfit they took me downstairs to cosmetics. We walked over to the Bobbi Brown counter to be greeted by another extraordinary group of people. They did my make up and even gave me products the they used. Like I said, a dream come true in itself.

Thursday night, we got lost on a way to a restaurant we had wanted to try. I was exhausted. We walked for what seemed like forever. Everyone seemed to be reaching there last nerve. We ended up walking back towards the hotel and had dinner at a restaurant called Cinema. It was an old time movie theater made into a restaurant. I don't know if it was the fact that we were so hungry or relieved to no longer be walking, but we had a really special family dinner. The food was great, we were passing our plates, laughing, and talking. It was yet another memory to cherish. And a reminder that sometimes you have to take the long way to something great. (FYI: It turned out the restaurant we had started out looking for was a street vendor or a food truck. No wonder we couldn't find it, it was on wheels!)

Thursday night at 2am (technically Friday morning) I woke up nauseous from the Iron chelating medication I was taking. Nausea woke me, but nerves kept me awake. I couldn't fall back asleep for hours. Thankfully, Caitlin, a Bobbi Brown make up artist was a miracle worker, no trace of the long night I'd had was visible after she was done. She had generously offered to come do my make up for "The Early Show" and again made me feel so beautiful.

We were picked up at our hotel in a town car by Make-A-Wish volunteer, Cindy, and were escorted to CBS. My family and I waited with Macy's employees and Make A Wish volunteers while we watched the first half of the show take place. Again, they were the most infectious group of women. They were a good support system backstage.  A show producer came and talked to me and explained how things worked. They were so kind to take the time when I am sure they had a million other things going on. It was fun to get a behind the scenes look, especially for a girl who wants to pursue journalism. Finally we were escorted downstairs to the studio. I was miked and lint rolled. Yes, someone lint rolled my dress for me, I told you they treated me like a princess! And then I took my place on the couch with Martine Reardon, CMO of Macy's. A commercial break took place and Erica Hill and Jeff Glor made there way to the couch, introduced themselves, and 5, 4, 3, 2, 1...we were rolling! It went by so quickly, I was just hoping no one could see me shaking in my heels. That morning, I was on a high. As we said our goodbyes, we got back in the car and I grabbed my phone and saw I had several e-mails.They were pouring in from people who had watched the segment and had already been on my website to join the registry. I read the e-mails and was overjoyed at their enthusiasm, the sweet stories they shared, and the hope they were giving so many by joining the registry. We went back to the hotel and I took a long nap, and believe me; I fell asleep with a smile on my face.

The fun ensued when Ryan told me an anonymous source gave us tickets to the Z100's Jingle Ball. Not only did they give us tickets, but they gave us tickets in the event level seating. In other words, WOW. We were two rows away from Lady Gaga, Pitbull, Gym Class Heroes, Demi Lovato, Kelly Clarkson, Pumped up Kicks, the list goes on and on. I was dancing and singing the entire night. Needless to say, I was exhausted, but it was worth every beautiful lyric and beat I heard that night. We took a taxi back to the hotel, in true New York City style.

The next day, we went ice skating at Rockefeller Center. Of course, Make A Wish had it arranged that we got to skip the lines. I was running on adrenaline as we skated around and around. Ryan and Allan were holding me on both sides. I would have hated for an injury to mar the electricity in the air that night as we skated under the Rockefeller Center tree. At one point a little boy crashed into me and Ryan was holding three people up at one time. It was quite a feat. Of course, being so determined that I could do it, I took a few laps by myself and I survived without falling.

We flew home Sunday afternoon. I was still on cloud nine. Honestly, the word that sums it up for me is beautiful. From the kind-hearted and generous people I met to the city in it's Christmas splendor, everything was just beautiful. The memories they gave my family and me will truly be cherished. New York left me inspired, motivated, thankful, and refreshed. And for that, I am so grateful to everyone who helped make it possible.