Friday, January 4, 2013

New Year, New Perspective...New Life!

Merry Christmas, Happy Hanukkah (Since I know I have some Jewish supporters! :)), and Happy New Year!!! And a pretty great new year it's been so far: My counts are FINALLY beginning to rise, which means quite a few things:
- I have more energy in general and I'm stronger and more balanced
- My pain is almost totally gone, which means going down on my pain meds, SLOWLY so that I don't have withdrawl symptoms since I've had to be on them for so long
- Once my counts reach a certain point and I'm pretty much pain-free, I get to go home for a few weeks before coming back for transplant!
So, if things go as planned, hopefully I'll be home sometime in the coming week to rest and let my body heal as much as possible before starting my bone marrow transplant. While I'm home, however, I'll have to come back to the hospital pretty frequently to have my counts checked and to go through lots of pre-transplant testing. When I'm finally ready to be readmitted, I'll have to move up to the floor that's specifically for bone marrow transplant patients rather than being on the pediatric floor; that means I'll have a new doctor, new nurses and techs, and a totally new environment--without an art room. :( However, the floor is currently being remodeled, so I'll have a brand-new, really nice room. In addition, the floor will have an exercise station (After transplant, exercising every day is required to keep your body strong), "meditation" room where I can go to be alone and pray or just have some quiet time, and a family room for visitors. My social worker, who mainly works on the transplant floor, has assured me that my new room and floor is going to be GORGEOUS.

I think most people would expect to be excited to move to a brand-new, beautiful room and finally be in the last phase of treatment after 3 long and unimaginably difficult cycles of chemo. Instead, if I'm being totally honest, I'm nervous and even pretty scared. I'm so comfortable with this floor, my amazing nurses who have become close friends, and having access to an art room and all the movies and video games I could possibly want. I don't like big changes; after almost 4 months here, it's kind of like home.

It's almost ironic that this huge change in my life is happening at the same time lots of people are deciding to change their lives as well. New Year's resolutions are usually pretty big changes to benefit oneself, like living a healthier lifestyle with diet and exercise or spending less money and saving more. Those changes take a strong, dedicated person. I think the majority of people would admit that New Year's resolutions tend to fall off after a few weeks or months. However, there are a select few who actually stick to their goals and achieve them. I think the hardest part of making big life changes and sticking with them is being willing to be outside of your comfort zone for a while and eventually redefining your definition of what's comfortable. It's not easy, but it's what I've had to do so many times already during this journey. There are the huge changes I was forced to get used to, like having a port surgically implanted in my chest to make blood collection easier, and especially living in a hospital rather than my college campus. Then there are the smaller changes: losing my hair, eyebrows, and eyelashes; wearing pajamas and sweats 24/7 rather than putting together cute outfits. I've had to allow myself to be uncomfortable in a lot of different ways.

What I've learned from all these difficult changes is that once you have the courage to get on the other side of the lines you draw in life, you find that the other side isn't as scary as it seemed before. I'm not going to say that change is easy, but as things change, so do your priorities and your outlook on life. When I was first diagnosed, I was terrified to lose my hair and even more scared to lose my eyebrows and lashes. I didn't want to look "sick" or have people feel sorry for me. However, now that it's all gone, I've realized that I almost fit in more here in the hospital. The majority of us who stay here long-term are oncology kids getting chemo, so there are lots of us "baldies" and people don't really take too much notice. :) Even being outside of the hospital, I have learned to spend way less time worrying what people think of me. Cancer has made me realize how frivolous it is to worry about what others think, even if they do think I'm "sick" or feel sorry for me. By being forced out of my comfort zone when it comes to physical appearance, I see from the other side how useless it was to spend time worrying what a stranger (or anyone really) thinks of me.

You'd think with that life-changing realization about change that I'd be fine with moving up to the transplant floor. But, since you can't really control the emotions that come and go, I guess it's one of those lessons you have to be taught over and over again. I can't help feeling nervous about moving to a brand-new environment and having brand-new experiences; it's out of my control. I do have control over how I decide to act according to how I feel. Rather than carrying the burden of my bundle of nerves all alone, I do my best to trust God, my doctors and other caretakers here at Loyola Hospital, and my parents that this is the right medical choice...even if it's a little scary. I have SO much care and support from more people than I can imagine; I know that there are many, MANY people I don't even know who have followed my story and are supporting and praying for me even though they've never met me. In addition, having the support and love of all of my family and friends is, once again, getting me through a difficult time. I know I sound like a broken record with how much I talk about all of the support I receive, but when I know that I have prayers and love from such a multitude of people it makes me feel stronger and less afraid. There's no question on whether or not I can make it through transplant; I know I will!! I guess it just comes down to trying as hard as I can to keep a positive, hopeful attitude as often as I can. Obviously I can't be positive all the time, but lots of studies have shown that your mental beliefs can have big effects on your body. So, the more I either think positively or believe the awesome words of all my supporters, the better I believe I'll do physically. It's not going to be an easy challenge to have to pursue, but, as my Mom reminded me a couple of days ago after reading a note from a family friend, once I'm done with my transplant I'll literally have a new life and a new birthday, a wonderful gift from my little sister. Yeah, be jealous...I get TWO birthdays! ;) I want to add another big THANK YOU to Mary for giving me the most beautiful gift she ever could. I love you little sister and I'm thinking about you all the time!!! <3

I hope all of this is coherent and legible...I'm still on medication that effects me mentally, which includes reading and writing. :P Regardless, I wanted to make sure to give everyone an update and not leave my family, friends, or supporters without knowing how much better I've been feeling! :) My counts are still extremely low compared to someone who's healthy, and I'm still sleeping more than usual, so as much as I would love to have some visitors, I would still appreciate a text/call to my parents or me before visiting! How I'm feeling, like if I have nausea or need more sleep, is still day-to-day and my immune system is still very, very weak. I've still been recieving beautiful notes and cards of encouragement, and I read and save every single one!!! I have the BEST support system a girl could ever ask for. :)

Lots and lots of love and thanks, as always!



  1. Sarah!!!

    You're doing so well! I love your attitude through all of this. I wish I could have half of the strength and courage that you do to get through the day. I think about you everyday. I love and miss you so much!!!

    I can't wait to see you when you get back to SLU :)


  2. Keep up your wonderful spirit, you inspire all of US to review our priorities in life. The new floor at Loyola without an art room...sad. Can I send scrapbooking supplies with your Aunt Lori to help keep you and others busy? I have too much and I'm looking for a good home for TONS of crafting items. Praying for you!

  3. Grandma and Grampa

    Dear Sarah:

    We are so happy with the good news today and are so incredibly proud of you. We have given out over 500 prayer cards. People we didn't even know asked for them. Everyone we know is praying. My Emmaus sisters are planning a prayer-a-thon during your transplant. We hope that you will be able to breath fresh air and feel God's sunshine very, very soon.
    Jesus had his worries as he walked this earth and talked to his Father often for support. Mother Mary will surround you with love. "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

    We love you, Grandma and Grampa