Regine's Book (24 page)

I'm an actor in the show of life, and the show must go on; I dislike sports awards ceremonies, but I feel like a top tier extreme athlete. What about you?

Sixty-eight readers commented on Ashild's guest post, among them Regine and Ashild herself, who wanted to provide some background to what she has written:

Thank you, Regine, for accepting my guest post.

I want to explain a bit more about what I wrote: I've been sick for a long time, and have lived through a merry-go-round of infections and downturns for several years. For a while now, I've noticed how people in the media (and elsewhere) always focus on healthy, athletic people who participate in spectacular events and competitions. This observation has made me want to celebrate the everyday heroes I know who have a courage and toughness that surpasses even that of the star athletes.

I was also inspired by some of the comments in response to your post about “everyday complaints.” It made me reflect on how little others know about what it's like to live with a serious illness. That's why I pulled these entries from my blog. So that maybe other people can understand what we go through, and congratulate us.

Most of all, this is a tribute to you, Regine. You are a cool, tough, strong, brave, open, thoughtful, and incredibly mature girl!!!

And I'm cheering for you!

—
Ashild

Ashild, I'm so happy that you're sharing this with us! You're a great writer, and you make a ton of really important points. I'm honored to share this entry on my blog. ☺ I wish you luck, and hope that things work out for you, too.

—
Regine

Friday, July 17, 2009

A
s you probably know, my blood tests are only heading in one direction these days. My bone marrow is saturated with cancer cells, and it has been for a long time. My white blood cell count is getting to the point where I'll probably need to have some chemo next
week to just slow things down. After that I'll start Vidaza again. At least we have some sort of plan though; that's better than not knowing anything.

The weather was beautiful today, and Eli and I decided to go for a picnic. We went shopping, and then we made lunch and went out to the forest. It was so nice. It's always nice to just sit and relax with good food and nice weather. And after we came back later in the day, we started watching a series that Karina recommended. It's called
True Blood
, and it's about vampires. The first episode was cool and it seems really promising! It's always nice to have something new to watch, being the TV slave that I am.

Wednesday, July 22, 2009

I
've been in okay shape lately. I thought the blood tests were going to be awful, but luckily they weren't! They're not great results by any means, but at this point they're better than average. The white cells haven't gone up much since Thursday, and that's good! As a result, the doctor thought I wouldn't have to undergo more chemo before they give me Vidaza again, and that's very good news. I'm going to start Vidaza again on Saturday—in a double dose, since I tolerated it well.

My blood status is as follows:

Hemoglobin: 10.7

Thrombocytes: 38

Neutrophils: 1.47

Leukocytes: 8.7

(No, I'm not expecting everyone to understand this.)

The Metallica concert is in a little more than a week. I'm actually allowing myself to look forward to it at this point. Plane tickets and hotel rooms have all been ordered. Will it actually work out? It will be
a little scary to travel alone, even if Eli comes with me. After all, Mom and Dad have been everywhere with me since I got sick!

But it will be good to do something on my own for a change. I'm eighteen years old, and I've always liked being independent. (The disease kind of put a damper on my independence though.) If the concert works out and goes well, I'll be ecstatic; the only thing I'm scared of is getting swine flu. Wouldn't that be so typical?

Today Eli and I went out to eat. It seemed appropriate. My blood tests hadn't gotten much worse, and it looks like I'll be able to avoid the chemo we were planning for. I have to treat myself to things when I can. The food was so good.

Monday, July 27, 2009

I
don't have very much to say. I've been in miserable shape these last few days. Could hardly bear to see any visitors. The drugs are destroying me. My blood tests are going to hell, too. My immune system is okay, but what good is that if everything else is in full shutdown mode?

I wonder what will happen next. I'm absolutely sick of taking blood tests and then waiting for answers. Always bad news. I hate the waiting and the disappointment when I get the results. I lose a whole day, and then after I finally manage to pull myself together again, I just have to wait for the next disappointment. I've been feeling lonely lately. I'm scared that I'm going to die soon. I can't stand the thought.

I've been brought back to reality again. Dark thoughts are overwhelming me. I feel the tears coming. I want to live normally, to be healthy. The fact that it will never be my turn to get well is something I can't manage to accept.

Saturday, August 1, 2009

T
here was no Metallica concert for me. I had a tiny bit of fever, my body ached, and I was in bad shape. That's just the way it's been lately. Luckily I'm starting to feel better. No matter what, I really appreciate what Norway, Inc., did for me. I even won a contest and was going to get to meet Metallica. How awesome would that have been? But they said they were sorry I couldn't make it and even dedicated “Nothing Else Matters” to me! I was speechless when I heard that. To me, that's a pretty big deal. Jan Erik from Norway, Inc., is going to send me a DVD of the concert, along with a guitar pick. (Amazing!) I'm disappointed that I couldn't be there. Jan Erik made so many arrangements for me, so I hope that he and the others had a fantastic time anyway. I'm just so sad I couldn't go. Metallica has been a big part of my life.

I went in for more blood tests today. The white cells have dropped to 6.2! That's good. I hope it stays that way. If nothing else goes wrong, I won't need to take any medicine next week, and then I can go to RaumaRock! Right after my relapse, I got a festival pass, etc., from the organizers, and earlier today we made arrangements to stay overnight. I have to believe it's going to happen. The festival manager is even going to arrange for a photo pass! Enslaved, among others, will be at RaumaRock, and they're one of my favorite bands. I wholeheartedly recommend their
Monumension
album.

Monday, August 3, 2009

T
here haven't been any changes really. The white cell count has gone down a little more. The Vidaza has really worked this time, which obviously makes me really happy. I have to struggle so much
during the day, so it's good that something comes out of it. I've been really sick. People say, “Be positive, and do what you want.” It's not easy to be in a good mood when almost all I can do these days is lie in my bed. I'm exhausted most of the time. I rest and rest but never feel fully rested. Every single day is a burden. My body can barely manage to support itself. The only time things are good is when I sleep, because then I don't have to feel anything. Feeling so weak does something to your psyche. I'm depressed every single day. I really hope I get better soon, because I don't think I can stand feeling like this much longer.

Wednesday, August 5, 2009

T
hank you so much for all your comments! I really appreciate it. I'm sorry if I sound a little rough every once in a while; it's hard to be polished when you're in a bad mood. My mood's a little better today, and my condition, too, maybe? I'm not quite sure. I hope things are headed in the right direction now. The festival manager asked if I wanted to be picked up by helicopter. Haha, how decadent! It makes me so happy when people do nice things for me. I said yes even though I'm afraid of flying. It will probably be amazing, despite my fears. I've decided that I
will
go to RaumaRock. I will. I will.

Will have blood tests again tomorrow. Traveling, even for a weekend, takes a bit of planning, but that's just the way it is. As long as the disease is in my body, I'll never be free. As a rule I only get a maximum of two to three days at a time that are hospital-free. BUT—it's better than being hospitalized on a full-time basis. I need to get blood before I leave, so that I can build up my strength. And maybe I need to get blood platelets too—I don't know. I hope the white ones haven't gone up. The fear of that happening never goes away. I hope the tests
are both good so I can leave and not worry about it; that would put me in a very good mood. If the test results are bad, I wouldn't be able to relax, even if I felt okay. I need some good news now.

Friday, August 7, 2009

H
ere I am, ready for RaumaRock! I'm sitting here
dreading
(and also looking forward to) the helicopter ride. It'll be exciting at least! This is going to be a crazy good day—and an amazing weekend. Enslaved is playing today, and I'm going to get to meet them! How cool is that? But even aside from that, there are a ton of other great acts playing tonight, and I can't wait to see who will be this year's surprise performers.

We'll talk! I hope you have a good weekend.

Sunday, August 9, 2009

R
aumaRock was such a fantastic experience! I'm so thankful. Markus (who was working there) took such good care of me, and did everything he could to help me have a good time. Everyone was so nice and they even gave us access to the backstage area! It was incredibly generous, and I'd never been backstage anywhere before that. Words can't describe how grateful I am for everything the people at the festival did for me.