*(Day +63), Tuesday, (July 13th) was an exhausting but fun day. I didn't have to get a transfusion or go to clinic for any reason so it was our first day off. I slept in and then we went to meet our care partner for lunch at my favorite italian restaurant in the Mall of America. We did an early lunch so the restaurant was empty, clean and somewhat germ free. (Here's hoping). Everywhere we go I bring hand sanitizer and wipes so that I can keep my hands clean and we can clean chairs and tables that we sit at. That, combined with my mask, will really help to minimize my chances of picking up viruses- which is our biggest threat right now.After lunch my Mom and I did some shopping. I've been pretty down on my self lately because of all the weight gain so it was nice to shop and buy some new, fun, summery clothes. Now it's just more motivation to lose weight so that I can look super good in my new clothes. My mom and I also went and saw Twilight. The theater was pretty much empty so I wasn't freaking out about germs. I still have to wear my mask everywhere that I go (except for when I'm eating) but I don't really mind it. It does attract attention, which is annoying. Like, what is there to look at? Have people never seen a girl with a scarf and mask? It's called chemo. It happens. It's not like I have some growth on the side of my face or a third arm. I don't understand what the excitement is. I've found that people around my age try very hard to look away so you know they aren't staring at you. And little kids are the ones who turn to their moms and say "mommy, why is she wearing that?" without realizing you can hear them. But my favorite are the old people. Old people don't even bother to try to be discreet. They'll stare straight at you and not even care that it makes you uncomfortable. For example, After Twilight my Mom and I went and tried this Crepe place in the mall that I've been dying to try. I got a crepe with cinnamon sugar and ice cream. It was delicious. I was sitting at the table and I look over and see a family and the dad is just staring at me. Not even in a curious way. More of a "you're a freak show" type of way. I don't get it. I understand curiosity. But I don't really like being stared at and whispered about. At first I wasn't going to bother getting a wig because I didn't think it would be that big of a deal but after that, I've decided to look into getting a wig. We have an appointment to look at wigs tomorrow afternoon. After Crepes we went back to the RMH and I just took it easy for the rest of the day. My feet are still swollen so they were hurting pretty bad from all of the walking. I feel my body getting stronger the more that I move around so even though it hurts, I know I need to stay active.
*(Day +64), Wednesday, (July 14th) was a relaxing day. I had to go to clinic in the morning to get a platelet transfusion but after that we didn't have anything planned so we just came back to the house. On wednesdays they do cook-out lunches at the RMH so we ate lunch and talked with some of the other housemates. My mom has been quite the social butterfly while we've been here. She's become friends with almost all of the parents. In a way, it's nice to build relationships but it's also hard because some of their kids aren't doing well and you get emotionally attached to them. Almost every family has some form of a blog and we all read each others' blogs, too. There's one little girl here who is absolutely adorable. She just had a transplant and things seemed to be going well but her dad just updated her blog to inform everyone that she has developed VOD (the liver failure disease that is 90% fatal, the one that I was at risk for and the reason I had to delay transplant). My heart breaks for her and her family. Throughout transplant, VOD was my biggest fear. Even though we worked hard to get all of that extra iron out of my liver, I always feared it wasn't enough and that I would develop VOD. So far, I've managed to avoid it and it looks like I'm out of the woods in terms of developing VOD. But to hear that she has it is so heartbreaking. How do you face a family after hearing something like that? There was another boy on the unit who I had heard of. I won't say his name but he always wore a cowboy hat around. My mom used to tell me about how much fun he was having driving on the bikes in the hall. I just found out he passed away. It's so hard and surreal to know that you're just doors away from patients who aren't going to make it. Thankfully none of the patients I've talked to have passed away but you always run that risk. It's scary. It almost makes me feel guilty for doing well. At lunch on wednesday we ate with a mother of a girl who is around my age. The girl isn't doing so well. Her mom asked how I was doing. I felt horrible just telling her that I felt great, knowing that her daughter was having such a hard time. My mom keeps encouraging me to make friends but I'm scared to. There are several teen girls being transplanted right now. One is 17 and is already out of the hospital so we talk sometimes. One is somewhere around my age (the girl with the mother we talk to) but she's still in the hospital so we haven't been able to talk yet. One is 20 and she's still in the hospital but I talk to her mom and I talk to her on facebook. She should be getting out of the hospital soon so we can hang out. There are a few other girls around our age but I haven't talked to any of them yet. It'll be nice when they all get out so we can all hang out but I just hope that all of them get better because I don't know how I could handle something happening to one of them, even though we aren't friends yet. It's such an interesting environment to be in. Everyone is so loving and generous but there's an undertone of fear and pity. It's like one big family here, which is great because it creates a support system. But it also creates heartbreak every time we lose someone- which is more often than anyone would like.
*(Day +65), Thursday, (July 15th) was a boring day. I wasn't feeling very good so I mostly slept all day. I really only left our room at the RMH to go downstairs for dinner. It seems like I have a few good days and then I wear myself out and have to rest for a few days. It's hard to find the right balance. It's frustrating because my mind wants to get out and do stuff and be active and live again but my body just can't handle it. I never thought I'd say this but....it's hard to be lazy. Being on campus also makes it hard because every day I see these college kids outside playing volleyball and having cookouts and going swimming and I can't do any of it. I feel lame. Nobody likes to feel lame.
*(Day +66), Friday, (July 16th) was a fun day. We started off by going to the National Cancer Society so I could pick out a wig. All along I had thought I didn't want a wig because I didn't want it to look fake and I have to wear a mask everywhere anyways so people would stare regardless. However, after going out with my bald head and mask, I discovered that way too many people don't have the best manners and don't mind staring. So, I decided I'd give a wig a try. I tried on some wigs that were the same color as my original blonde color but they were all either too long or too fake-blonde. Then I tried on some reds for fun but I looked ridiculous. Finally I found a brunette wig that looks really natural. It's straight and short and it has bangs. It doesn't really look like me but it's better than being bald. All of the different styles of wigs have names and the style I chose was "Karina". Karina has been very kind to me so far except for making my head sweat in the Minneapolis summer heat. When Karina is not on my head, she resides on top of a cowboy hat so that she keeps her shape. Afterwards, my mom and I went to this really cute french restaurant. It was delicious. That night I mostly just worked on cleaning up my loft and waiting for my family to get in town.
*(Day +67), Saturday, (July 17th) was a crazy day. I had to be at the BMT clinic at 8 am to get a platelet transfusion but of course the platelets weren't ready so we sat around for about an hour. Afterwards I went back to the RMH to get ready because my family was in town. My dad, stepmom, two stepsisters, brother and half brother all went to the Midtown Global Market for lunch. I've talked about the MGM before, but it's basically this huge building filled with stalls where people sell food and goods from all over the world. My dad and stepsister, Bre, ordered from a mexican restaurant. My stepmom and I both ordered from a seafood place. Jameson ordered from a Jamaican place and my other stepsister, Brittany, and my half brother, Ethan, both ordered from a chinese place. Ethan's plate of rice and chicken was bigger than his face and he spent a good half hour picking up wads of rice and shoving them in his mouth. By the time Brittany and Ethan were done eating, it looked like they hadn't even made a dent in their plates. Although, I think Ethan ate more than Brittany. The kid loves his chinese food. Afterwards we shopped a little bit and then came back to the RMH to hang out in the arcade room. Ethan fell in love with the DDR machine. By the end of the day I was absolutely exhausted and pretty much passed out immediately.
*(Day +68), Sunday, (July 18th) was Jameson's 14th birthday. My family left in the morning but Jameson stayed behind and is going to stay with us for a few weeks. Unfortunately, I wore myself out the day before so I was a party pooper on Sunday. Jameson opened all of his presents and then spent most of the day playing on his new xbox 360. I was still feeling miserable later in the day so they went to his birthday dinner without me. I don't think he minded having some time alone without me.
**Reason of the Week: I bought some new clothes this week at the Mall, even though I was still way above my normal weight because of all the fluids, and now they are starting to fit. Any ounce of normalcy is always a reason to smile (RTS).
1 comment:
We had a great time at the market with you! So true about Ethan and rice, he could live on that stuff! Enjoy your time with Jameson and get lots of rest!
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