August 24, 2012Okay I'm sorry I'll be catching up again today, it'll probably be a bit random, but hopefully it'll get easier as time moves on to write shorter and neater each day! (And I'm pretty horrible with computers but I'll try my best!) Today, (Day 5) I had a crazy schedule, like every other day that never seems to slow down, it was a lot smaller than every other day though. It's therapy here, radiation oncology there, a visit with my oncologists, consultation with the pharmacist and everything in between.
I thought it was interesting that on Sunday, one of the first things my first Dr. told me was "I believe it's impossible to come to St. Jude's and leave without believing in a higher power." There's a lot of comfort in that sentence to me.
And the cicadas! Holy cow, they are so noisy. Diane and I thought we were walking through a power plant. They hum so loud it was deafening!
Yesterday I woke up around 3 AM. My legs felt like they were broken. Every step I took felt like a stress fracture from the knee into the foot. It was the most excruciating pain I've ever felt. I wanted to give up/get my legs amputated, I'd do anything. But Diane, who's always there to comfort me, helped me until we were able to get my body going again, and some medication to relieve the pain. We found out another side affect to my steroid, is it could weaken my bones and if pain is an indicator, it is doing a great job! But I'm able to manage the pain and they are working on reducing my dose so all is well. Yesterday morning was the hardest time I've had yet. But spirits have been raised high since then!
I also had to fast yesterday for the research study they did. (Accidently chewed a piece of gum, whoops!) After getting an IV without any numbing, and laying on the bed around an hour, of course not eating (anyone who has ever been on steroids know how hard that is), I felt like a champion!
I was thinking the whole time during the research scan about how much I love to make things with my hands! Especially bracelets. I'm going to look into this!
Anyways, after finishing my full day schedule, we were able to get back to the grizzly house and relax.
This morning I woke up at 2 AM. In fact, I don't think I've slept since. I took a shower, read all my emails, got caught up on everything, and by 4 was even able to accomplish core! I know it was only 100 sit ups and 150 bicycles, but it gave me a good sense of accomplishment! It did help that I wasn't even hungry or mad about anything all morning, and there was no leg pain today! It has been a great morning.
So we head out today, making the usual rounds with the doctors. I am for sure starting radiation on Tuesday next week. They told me I'll lose my hair in 3-4 weeks, and they'll be going in with the radiation from 8 different spots. I should only lose hair in the target area of treatment which will be the lower part of the back of my head. This was a great relief to me. Wide headbands and scarves have been recommended. So I went the the pharmacy, picked up a boat load of medications and then headed to a group therapy, basically we made a big mirror, for the art show here. It was good to meet the other teens, who'd been there from 36 days to 6 months. Most of them have/had Leukemia. One of them had her head shaved yesterday. They were all really pleasant teens with tender hearts. One boy is on the same steroid as me and kind of scared me the way he talked about it. But I try and look at myself as an individual and that not all statistics need apply to me.
So guess what, I skipped school, (Diane and I are rebellious sometimes;)) and we went to the farmers market they had going on today! We got tons of soap, the lady selling the soap bought me this bread I'm obsessed with. So amazing of her to do for me, what a blessing. And we were able to get cherries and peaches! I have to say what I miss most about home (besides you guys) is living on an orchard with unlimited fruit. I MISS FRUIT.
Last week it was all about Guacamole, Cheese and Salt. This week it's hummus! We got 3 containers and every time we go to dinner we get one. I eat it at 9 PM every night. And my nurse is making me some! We'll see how long this one lasts. My cravings usually last a week, so we should have gotten plenty to sustain!
Soap lady who bought me bread
Picking out cherries and peaches
Then we had lunch, at first I didn't feel that hungry, but I love the veggie pizza and wraps here! So this is trip 2! I'm losing my appetite next week anyways, so why not!
He has been such a blessing in my world. I look up to him so much, for his perspective on everything. It's hard to not be home telling him all this in person, because he's definitely one of the top people in my life, who has changed it dramatically. He's helped me through everything, and now with my cancer. He is such a strong guy, I guess an adult now. But I hope one day I can be more like him.
I'm going to a sleepover tonight with a local group of young women, jokes on them when I wake up at 2 and stay awake! Usually I just watch Diane sleep or listen to the build-a-bear recording from my family & Isaiah, we'll see what I feel up to in the morning! I'm a little bit nervous because I've only met them once before. But they are really nice people, and easy to be around.
There's so many questions everyone asks, don't get me wrong, I have no problem answering them, but it's the Dr.s questions that are starting to get a bit overwhelming. Such as, do you want a port? I found out yesterday I could get one, but as for now my decision is to just do IV's. And so many hair loss questions, no, I do not want to lose my hair, yes I'm scared, I'll think about it when I get there! And the biggest question (from everyone): How are you?
I was just diagnosed with DPIG, no one survives this thing, well a small percent do. But I prefer to look on the bright side of things. I'm doing great, I will have bad days. But I'm also stubbornly strong, I believe in miracles, I know God knows better, I know everything happens for a reason, I know I'm here for a purpose, and in the meantime, why make things worse for myself than they have to be!? Besides, I miss everyone so much, but I sorta love it here. I'm so bad with change, I was terrified to move here, but I haven't had a regret this entire time. I know God loves me, I see it everyday through you guys, other patients and people, Dr.'s, and God himself.
Lastly, I want you to know that I read all of your comments (MULTIPLE TIMES) before my appointments, in my free time and when I wake up at 2 in morning. Your encouraging words inspire me and help me get through the tough spots in my day.
I love you all soooo much!