Hello everyone! it's been a minute since I've posted on here, and It's not because I don't have anything to say, but it's because I have so much to say sometimes, that my thoughts get jumbled and overwhelm my mind. I constantly think about my blog and posting, to update people on how I'm doing, and even to keep a journal for myself...but sometimes life just gets in the way, and life has just been getting in the way. I wake up at night sometimes and have these amazing thoughts that come to me about what I should post on my blog, then I wake up and I totally forget what I was going to write. There's chemo brain for ya!
Ever since my "Utah Incident" life has been a little crazy and I would say different. And also very hard. Not only physically, but emotionally. There's the constant fear and the what if's that haunt my mind daily. "What if my dressing lifts up a little, will I get a line infection?""What if I don't wash my hands here or there...will I get an infection there too?" lol! "That guy is coughing, I need to move, I need to wear my mask..." Little things that I stressed over before, but not to this severity.
I don't know if I expressed this in my last post but, before all of the craziness this summer, but I felt like I was getting to a better place. Physically, emotionally, medically... Maybe that's me comparing that time to now, but it seems that way at least. I look back at pictures on that time; the pictures of New York, where so much magic happened. I was taking an institute class and driving myself, hanging out with friends, felt good about how I looked (I know silly, but true)...and all of that is kind of gone. I haven't been able to take any classes or drive myself anywhere because I've been on seizure medication (so no real independence for a few months), my energy has plummeted and honestly most days I feel like crap. And most days I don't have the energy to hang out with any friends because I just don't feel good or just spend my time at the hospital. I honestly just haven't felt like myself for a long time, and I want to get that back. Another thing that has been hard for me has been the way my body has changed. My body went through so much trauma this summer and my body kind of went crazy on me and I gained some weight. For a teenage girl who is turning 20 this next week, seeing all their friends getting married, going on dates, thriving in college and having the time of their lives...It's been a hard thing. My body is already scarred, permanently bruised, and I'm just getting hair back and I've come to accept those things with time...It's just been one more thing I didn't want to have to worry about. I want to feel pretty, like most girls.
I share all of this not to make you feel sorry for me, but because it's real and this is a place where I feel like I can share things. Social media has a way of depicting a "perfect life" of most people, and I think a lot of people struggle, with a lot of different things, whatever it may be. I think it takes a strong person to express what they really feel and be real.
There hasn't been all bad things!! I have started physical therapy and I've been very successful in that. I go twice a week, and while it's so hard for me...It's challenged me and pushed me farther than I knew I could go, and I've been proud of the accomplishments I've made. Like the other day, I went up PCH's 10 flights of stairs...I mean I can't walk now...but I did it lol!
We also weren't making any progress with my GVHD (Graft Vs. Host Disease) and reducing my steroid's, and my mom and I were getting very frustrated. My GVHD mostly affects my gut and skin right now and so the steroid's have been controlling that for over three years, so was the ECP (Apheresis). But both things come with side effects, especially the steroids, and right now, the steroids are doing more harm than good so they need to get me off. But my body reacts to the tiniest de-crease...and goes crazy. But at the same time it goes crazy with them too, and my stomach just reeks havoc on me and it feels like my insides are getting ripped apart. It's not a fun experience. So, I started a new treatment last week called Tocilizumab. It's an IV drug they're using every three weeks to try to replace my steroids. So we'll see. My neurologist is also planning to wean me off my Kepra, which is my seizure medication, so hopefully that means a little more independence. My headaches have been out of control, so we've been in close communication with him to try and figure something out for those, so far nothing has really been helping. I'm also still doing IVIG infusions about every three weeks to keep my immune system boosted. I still am not immuninized from after my transplant, because they haven't been able to get me off of the steroids, so they have to keep that up and I still have to wear my mask every where I go, because I don't have an immune system. Any little virus could be really dangerous. I'm also still on 16 hour fluids at home, so I carry around my heavy backpack with me everywhere I go. But thanks to my fellow cancer slayer Cayden, he hooked me up with some rad Christmas lights to deck out my backpack with. So we've gotten pretty festive around here. Thanks Snells! My Kidney's are really damaged, so that's the main reason I have to keep up with the nightly fluids.
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To keep you all updated on the exciting things going on in my life, because you know there is a lot of that, I'll start with my surprise trip to Disneyland. My awesome parents, and my best friend Madi and her mom, Lee, kept the best surprise for about a month. They had been planning a whole Disneyland trip without me knowing for my birthday, and they all kept it a secret...and if you know any of them, that's really hard to do. Well they took me to lunch a week and a half ago, the Saturday before we were going and gave me a letter surprising me with the trip. We had THE BEST time! Everything was decorated for Christmas and it was pure magic. We ate all the food we could and just had the most fun time together. It was my first trip out of the state since Utah, and I was nervous, but everything went well and we had the most wonderful time! How could we not...we were at Disneyland...at Christmas? I also got to participate and host the Ignite Hope walk at PCH this year. It was a wonderful way to kick off the holiday's and so much magic and love was felt that night. Just seeing everyone's candle light's and lightsaber's light the night and see the patients looking down from the window was truly inspiring. I remember being that patient in the hospital on Christmas, and they truly do everything they can to make you feel special and make your family feel special. My family still says that, that Christmas three years ago was the most special Christmas we've had. Not because it was a happy time, but because it was a special time with loved ones and all about family.
Another really exciting thing happening is my Melodic Caring Project video is FINALLY coming out and will be in a theatre for people to see on January 4th. The crazy thing is, tickets already are SOLD OUT! We literally have the best support from family, friends, nurses, doctors, and so many others. I can't wait to see it. A HUGE shout out to the Melodic Caring team for the amazing experience on putting it together, the trip, the shoots, the shows, just about everything. You guys are one incredible team. Can't wait for everyone to see it!
Lastly, I can't believe Christmas is just around the corner and the new year is upon us. I've had a lot of time to reflect upon my savior Jesus Christ and his birth and also his atoning sacrifice for us. It is so comforting to me to know that he has felt everything we have and because of him we can live again and be perfected through him. I am also so thankful that I can be with my family forever. It is such a blessing to know that.
By the way, If you're in need of a cute Christmas outfit, head on over to Lizard Thicket Boutique down at Dana Park. This cute outfit I'm wearing is all from there and so fun and festive, and also so cozy! They literally have the best holiday pieces right now. It's not to late to go grab a cute outfit! Plus, they have the best customer service and prices and will help you pick out your perfect outfit for your Christmas or New Years party! Tell them I sent you in! XOXO
That brings me to the 30th which is my birthday but more importantly my brother and cute future sister in laws wedding. It's going to be a beautiful day, and definitely a party. I am so thankful for everyone's constant support in this long battle. For the messages of love and encouragement. I hope everyone has a Merry Christmas and a Happy New Year!!
P.S Brooks is still as cute as ever and gets all the attention in the house. We love her to pieces and she gives the best hugs. She also LOVES the neighbor boys, which is about the cutest thing ever.
Love, Kin
