Wednesday, November 19, 2014


It’s been over a year since my last post and I have done a lot of living. It does not feel like I am simply going through the motions anymore. I still have an overwhelming amount of appointments, pills, treatments, infusions, tests, etc. But it’s not all I do. I have a fragment of a quality of life. My life is this crazy weird mix of adventures, experiences, challenges, and doctors appointments. In the past year:

I have been in the hospital and I have gone on vacation.
I have had a blood clot in my heart and I bought my first car.
I have had surgery and I have indulged in a spa treatment.
I have been to every specialist you can imagine-neurology, radiology, oncology, hematology, gastroenterology, optometry, endocrinology, cardiology, dermatology, psychology, etc and I have attended several special music concerts!
I’ve gotten shots and taken shots.
I have worn a bone marrow transplant mask, and I have worn a masquerade mask while attending a gala.
I have planned birthday parties for thirty and attended pity parties for one.
I work hard at physical therapy and I relax while getting a massage.
I have eaten nuclear eggs and I have had a glass of wine at dinner.
I have days where my mom brings me dinner in bed, and I’ve been out on a dinner date.
My cheeks have grown to giant proportions from steroids and I went to a Giants playoff game.
I have had many fun girls nights out and I’ve had countless not so fun infections.
I have been helped by volunteers at the hospital and I spent a few weekends volunteering for one of my favorite charities; The Boot Campaign.
I have had a brain MRI and I was a bridesmaid in my brother's wedding.
I have been lectured about taking my medication on time and I have given speeches about cancer awareness.

I am doing my best enjoying the good and dealing with the bad-just like everyone else. I work hard to find a balance so that I am able to experience the enjoyable things I want to do while taking care of my body and doing the things I have to do.

Someone asked me why I hadn’t gone back to school, and they did so in a judgmental and condescending way. Usually, I clam up and I explain that I take chemotherapy, I go into my spiel about not being able to give it 100% of my energy. Sometimes I share the anecdote of throwing up in front of my entire college class on the first day of school (true story). This time, I looked them in the eye and I said, “I am enjoying my life right now. I am travelling and volunteering. I am doing things that make me happy and healing. I love school, and I will get back to it when it’s my time.” It was an empowering moment for me. I wasn’t ashamed or regretful of my reality like I have been for so long. I wasn’t looking for approval or validation to qualm my insecurities. I was comfortable in my own bruised, scarred, pale, and steroid fat skin.

My reality is swallowing over thirty pills a day, I take naps, I occasionally wear makeup, I have nausea, stomach pain, headaches, and body aches on a daily basis. The truth is that five years later- I still have more sick days than I do healthy. I do more hard things than I participate in fun events. Phoenix Children’s is on my speed dial, I am on three forms of immune suppression, I nap daily, and I have bald spots. But I have improved. No matter how small and slow the improvement has been- it feels remarkable to know I am moving in the right direction. I never would have been able to do all of the things I listed above had I not gotten better. Sometimes I look back at where I have been and I drop to my knees overcome with gratitude acknowleding how far I have come.

Like any human being, I am guilty of hiding my scars, my weaknesses, my insecurities, and my flaws. Whether it's a coping mechanism or an attempt to be positive-I post more pictures of the good things than I do the bad. I say “I am fine.” when I am not. I hide my actuality because I don’t want to be seen as just the sick girl. It has been five long years and if I posted every picture or told you what my days are really like- I am afraid you would look at me like I was foreign, treat me differently, or pity me. But I did what I felt was right at the time. And now, I am delighted to share that I am in the process of writing a book about my unconventional “climb”. It is remarkably therapeutic to be so boldly honest.  I am vulnerable and unfiltered pouring my heart on the page. Writing it is both scary and liberating. For what feels like the first time since I became ill, I have come to terms with what has happened. I am learning to accept the reality of my life while maintaining hope that it will continue to improve. I have never felt so alive.

1 comment:

  1. Hey Ceci! It's Julie from Australia, remember me? I've come once again to see how things are for you. Been thinking about you. I'm now quite unwell since my MDS has transformed in AML. But have 2 matched unrelated donors for transplant. One better than the other, I'm glad I have options. Wondering if you'd like to chat via email? You're my inspiration. I know the journey isn't easy but your attitude is great. Hard to always be positive when you're in pain & unwell. But there is always something to be thankful for. Bless you precious girl! Julie xo