Regine's Book (9 page)

I have to admit that I'm feeling pretty lonely these days. Some friends are really good about visiting, but others aren't so good. And there's also always a couple of other friends who just can't visit because they're sick. I guess I could go visit them, but I don't usually have much energy.

Thursday, March 12, 2009

T
oday I went to the movies with my mom and grandma. We had the whole theater to ourselves, and didn't have to pay at all either! (Thank you so much, nice theater man!) We saw
The Orange Girl
. It was really good, and I definitely recommend it if you haven't seen it yet. Going in, I didn't know exactly what it was about; I just knew it had gotten good reviews. So it was a bit surprising that part of the movie was about a man who died of cancer. It made everything so much more real, and it was really moving.

The blood test I took today was just good enough; my blood count is sinking, but that's pretty normal. If it drops much further I'll have to get a blood transfusion, so I hope it doesn't come to that.

A few days ago I got a letter from the county. I opened it and started reading. I've been invited to the “award day” at the Festiviteten
⁷
in Kristiansund. I wondered why I'd been invited, but when I read further, I saw that I'd actually been nominated for the “youth prize”! I wasn't expecting that! I was obviously pretty excited, and I wondered who had nominated me. There's just one small problem though: The prize ceremony is on Saturday, and for the time being I'm not really supposed to be around crowds or people. But I really want to be there! So I decided to go. We discussed it with the event organizers, and they'll put a table way in the back, apart from everyone else, for us to sit at. We'll also go in after everyone else, so that I won't have to stand in line or mingle with a lot of people. I don't know how much it will help, but…you only live once after all, and who knows, the doctors could have bad news for me tomorrow.

I went for a walk in the woods the other day. I took a bunch of pictures while I was there, but only a few of them turned out. It's always like that. You have to take a lot of pictures to get a few good ones. During my
walk I also got a chance to see what's happened to our forest. The place where my friends and I used to throw a tent together and camp, the place where we had so much fun, has been completely destroyed. Now it's just dirt and rocks. Luckily some of the best parts have been saved, like the meadow with the creek. I hope it stays that way. The forest gives people who live in the city a chance to really experience nature; it gives them a chance to get away from city life—to feel something real, something that hasn't been made by human hands. And if we continue like this, later on there will be nothing but streets and houses. That's crazy! Why can't they just leave it all alone? Don't blame me when, ten years from now, you find out that the forest has completely disappeared.

In the course of my walk, I came across some people in the middle of a conversation. They were saying how great the lots would be. I was furious, and of course I had to spy. Do they have any idea what they're doing, what they're giving up? I don't get it.

Sunday, March 15, 2009

A
bunch of you are probably wondering if I won the youth prize or not. Unfortunately, no, I didn't. I was disappointed, as you'd probably expect—after all, the award was worth 15,000 crowns, and that's a lot of money, at least for me. There were a bunch of strong candidates, but the ones who ended up winning were the ones who win every year (and so I wasn't very happy about that). It was a group of dorky gamers that has a LAN party
⁸
every year. I thought the gymnasts should have won instead. After all, they've gotten a lot of attention lately. They performed at the Norwegian Youth Festivals of Art and Norwegian Talents.
⁹
Really talented girls! Even if I didn't win, it felt really good to be nominated, which is an honor in itself.

This wasn't just a big deal because of the prize money; it was also my first trip out into the real world in over half a year. It was strange at first, but felt natural after a while (incredibly enough). I saw a lot of familiar faces, but many people didn't recognize me. Some did though. It was also fun to get dressed up for something again. Even if I don't have any hair to fix, I still felt good. The hat isn't that bad after all. And I think my hair is getting ready to grow again. I'm not the only one who thinks so either. Dark dots and an itchy scalp are good signs. It will definitely come in at some point, but it's hard to wait. I'm very impatient when it comes to things like this. Hope to have a few sprouts by summer, so I won't have to cover my head when it's hot out.

I tried taking a self-portrait earlier today, and I felt pretty good about it, considering I had to do it with a camera phone. You don't necessarily need a good camera to take good pictures, and you don't
really need an expensive editing program either. Creativity is the most important thing.

Self-portrait taken with a camera phone on March 15, 2009

Monday, March 23, 2009

I
found out that I might still be able to finish my junior year of high school, and stay on track for graduation. I really hope I'll be able to! I know that I can finish two courses over three months if I really put my mind to it. I'm going to register as a candidate in international English, history, and philosophy. It's going to work. I'll do everything
I possibly can to avoid having to stay on for an extra year. I'm not into the idea of starting my senior year of high school when I'm nineteen, and going to classes with a group of sixteen- and seventeen-year-olds. There has to be another solution. Besides, it feels completely wrong to do an extra year just for two classes. That would just be silly.

Time really seems to drag on, but all of a sudden I realized it's less than a month until my three-month checkup. I'm not really dreading it that much; in fact, I think I might even be excited for it. It's definitely going to go well. I know it will. And after the check up I'll be free. That's going to be so disorienting. I have a feeling that I'll feel like a criminal for even going outside, and I'll definitely still be afraid of coming down with something. I don't think that's so strange though, considering how hysterical everyone around me has been about this kind of stuff since this all began.

Speaking of catching something, my sister has a cold. It's not her fault, though, poor thing. It just happens, but even though I try not to dwell on it, I really am scared about getting sick. I get a fever from everything, even just from a cold. And if I get a fever that goes above 100.5 degrees, it's back to the hospital with me. I really hope that doesn't happen. I guess I have to try to just stay away from her for a while. It's important to just get through this period without any fuss. My body
should
be able to deal with a cold, but it would be better to avoid it.

I'm really looking forward to the summer. I've got tons of stuff planned, and it's all pretty big for me. Stuff like

• The Ulver concert,
  
• The Quart festival,
  
• A Stockholm trip, and
  
• RaumaRock
  ¹⁰
  

I think this is realistic—if not, I wouldn't have even bothered to daydream about it. I'm pretty self-aware, for those of you wondering. And I'm tired of people telling me what I can and can't do, because I'm the only one who actually knows. Instead, people should look toward the future and tell me instead about what they think I'll be able to do then. I've decided just to walk out of the room if the nurses and doctors start talking again about how I could hit a wall, etc. They always say that, but I have no intention of hitting a wall anytime soon.

It's kind of fun to look at what people search for before they find my blog. Even if it's nothing special, it's still interesting.

1. reginestokke
   
2. regine stoke blog
   
3. allogeneic stem cell transplant
   
4. ulver concert
   
5. blog regine
   
6. epilepsy
   
7. face your fear
   
8. heart palpitations, stomachache
   

The epilepsy thing seems a little weird though. When did I ever mention that in my blog?

I'm considering starting a new blog after my three-month checkup. After all, this blog is supposed to be about the disease, the treatment, etc. So I think maybe it should end when the disease ends, and then I could start writing about my “new” life on a new blog. What do you think?

Tuesday, March 24, 2009

A
s everyone knows, friendship is incredibly important—
especially
if you develop a serious disease. Then, you need all the support you can get!

Some people are just naturally supportive and easygoing. Anyway, I'm pleased to report that in my case, at least, I had a lot of friends who didn't make me feel forgotten when I got sick. Some of them visited me at the hospital, and others kept in touch via text messages, etc. As long as you care, it doesn't really matter what you actually say.

People who get sick—people like me—are still totally normal (except for being sick). We have the same personality that we did before, and we like to do the same things that we did before we got sick. The only difference is that, often, your appearance can change. That's especially true for cancer patients. Some people who get chemo gain a lot of weight, while others can't manage to eat at all during their chemo cycles, and they get super thin. And as everyone knows by now, you lose your hair. That's what everyone associates with cancer: hair loss. I mean, what's the first thing
you
think of when you hear the word
cancer
?

Nevertheless, it seems like the hair loss thing scares a lot of people. I mean that people get scared of the ones who lose their hair. That's my theory anyway. Because what other reason could there be for people not coming to visit? Right now, I'm cancer free, so it can't be the cancer they're scared of. So what are they actually worried about? A lot of men lose their hair at some point, and lots of men shave their heads for fashion or other reasons. But what if a woman loses her hair? Are people more scared of a woman without hair?

In addition to the hair on our heads, we also lose our eyelashes and eyebrows. We also tend to get thinner, and some women lose their shape entirely. In other words, we lose
a lot of our sex appeal. And for a lot of women, this winds up being a profoundly traumatic experience. (It was for me.) And it's not very surprising when you consider how obsessed our culture is with appearances. When we become less attractive, some people wind up looking down on us. People talk about me and say: “Poor thing, she lost all her beautiful hair.” But what about everything else? Losing your hair is a pretty small loss, in the grand scheme of things. (And just to clarify, I'm not necessarily saying it's any easier for men to lose their hair.)

A lot of people I know get their hair done two or three times a month, and of course they care a lot about how they look. When people say they look like they don't have eyebrows, or that they're having a “bad hair day,” I start to wonder what they think about me. I also wonder how these people would handle losing their hair.