—“Bergtatt,” a song by Norwegian band Ulver*
*Ulver (which means “wolves” in Norwegian) started out as a death metal band, but their musical style has evolved to incorporate diverse genres. The title of their first album, Bergtatt, means “taken by the mountains” and is a reference to people in Norwegian folklore who are lured into the mountains by trolls and other creatures.
Fifty-three readers commented on this entry, among them Regine's maternal grandparents:
Regine,
We didn't get to read your first entry before now. “Taken by the Mountain” is a really dark, depressing song; it doesn't reflect the person we know you really are. It's probably everything that you've gone through that makes you seem different to us now. (And that's understandable.) But it's over now.
You've made so much progress; the song's sad thoughts can't be allowed to win out.
Think of your mom and dad and how happy they were when you took photos of them in Sweden. It will be like that again, even though it's going to take some time. We can't wait for you to come home again. Be patient. Everything will work out in the end. Also, remember: All of Norway is rooting for you.
—Grandma and Grandpa
Remember tomorrow
Sunday, February 1, 2009
Well, the days keep rolling on, and things still stay the same. Everyone tells me that I should be thankful that everything has gone so well, and not to be so fed up. I'm thankful for that. I really am.
I talked to a nurse about my release and about following up at the outpatient clinic. It made me feel like this was really going to happen: I was really going back home. We even talked about that, about what it would be like to go home to Kristiansund. It's not a matter of going home and just living normally again. There will have to be a ton of follow-ups at the hospital. So this thing with hospital appointments won't end right away. But oh my god I'm looking forward to it so much. I plan on spending a lot of time outside, in nature—I won't need to wear a facemask there.
But then there's also the issue of GVHD reactions. I haven't had any yet, but they can happen really suddenly. I got a whole brochure about it. It was like three pages long. Insanely frightening. And I'm really scared I could have powerful reactions. I'm scared I could develop chronic GVHD. The brochure said you could lose lung capacity, and that it can affect the hair follicles so that your hair doesn't grow back, and that your pelvic area can narrow, which could make sex difficult (this is pretty rare, but still). And there are a bunch of other things, too. (Help!)
I'm having a hard time getting out of bed lately. I don't like walking around the hospital; it's boring. And I have to wear a facemask. That's what I hate the most. Everyone stares at me, and I feel like a freak. I have to wear it for the next three months. I know that it doesn't really matter, and that I probably shouldn't think about it, but still. And besides, it seriously bothers me not to have hair. If it doesn't grow back, I won't be able to handle it. (Just call me vain if you want to.)
I keep telling myself that I'm lucky. I hear about a lot of other people for whom this period has been much worse. I feel guilty when I get depressed and fed up. After all, I've almost made it.
In the silence you learn to sing
Friday, February 6, 2009
The latest update is that they finally moved me to the patient hotel! I've been here since Monday. Have taken daily blood tests and they've been totally fine, so now I don't have to go back to the hospital until Monday. So it's true: I've actually been released! It feels so good to be able to say that: I've been released. Feels strange. Fingers crossed that I get to stay here.
I'm going to have a bone marrow biopsy on Monday. It's always hard to wait for the results. I hate bone marrow biopsies, not just because they hurt so much, but also because the results scare me. Well, no matter what, I guess you can't really avoid reality.
There's not much to do during the day. It's freezing outside, so I don't take walks. And if I leave my room, I still need the facemask. So today I just walked up and down the stairs for a bit instead, which is still a major workout since I'm so out of shape. It totally exhausts me. Mom is in town shopping, so maybe she'll get something for me today, too? She was in town yesterday and brought me back a bunch of clothes. So now I'll have a lot to wear when I get home.
Some good news
Tuesday, February 10, 2009
The bone marrow biopsy I took yesterday was fine! I'm overjoyed. Since the bone marrow hasn't been good for over six months, this is really special. I just cried I was so happy. Hope things continue moving in the same direction.
There were some tense hours and a lot of nerves while my family and I sat waiting for the test results. It took six hours. I was nauseous and could not get it together.
Finally at home
Friday, February 13, 2009
Believe it or not, yesterday I finally got back to my house in Kristiansund again. So incredibly fantastic.
So unbelievably wonderful to see familiar surroundings: the house, the woods, and of course my sister and the animals. Some family jokers had put balloons, wine, and a nice card at the front door, which made it even better to come home.
Interview in today's newspaper
Thursday, February 19, 2009
You can read about me in today's edition of the Kristiansund Daily. If you don't have the paper, you can read it here: www.tk.no/nyheter/article4137057.ece.
Less than ideal
Wednesday, February 25, 2009
I haven't posted many updates lately, mainly because there's no real news to speak of. Things are going okay. My blood tests are fine, and I still haven't gotten GVHD or any other infections—at least so far. My overall physical condition is fair. It varies from day to day, but I don't really have much to brag about on that front. However, it does feel like I'm improving—albeit very slowly. Maybe the people around me are noticing some differences though. I go see the physiotherapist a few times a week. Sometimes I'm totally exhausted afterward; other times it's just fine. It doesn't take much to wipe me out at this point.
Some people might think that now that I'm home, everything is all right again—that I'm well—but there's still a lot of work to do. It takes a long time to rebuild your body. Can you imagine starting over from square one? I think a lot of people wouldn't even know where to begin. I just hope I'll be able to function normally by the summer; that's what I'm hoping for, anyway, because there's a bunch of stuff I can't wait to do.
Incidentally, I ordered my tickets for the Ulver concert in Lillehammer in May. I decided that I just couldn't stand saying, “No, I probably won't be well enough.” Because how boring is that? I ordered the ticket, so we'll see. If I can't do it, I can't do it. (But that's not going to happen!)
There's about a month and a half left before I have the three-month checkup. I'm looking forward to it and dreading it at the same time. I'm looking forward to it because that's when all the medical restrictions on me will be lifted. I'll be “free” again. (I'll also get to remove the ugly tube that irritates me so much—the one used to take blood samples.) And I'm dreading it because it's always possible they'll find cancer cells in my new bone marrow.
For whatever reason, today I feel confident that I won't have a relapse; there's just no reason to think I would—and that's good. I love days when I'm positive. Some days my outlook is a lot bleaker. After all, a relapse is always at the back of my mind. Especially when you hear about other people having relapses. I feel so sorry for Bengt Eidem, who just had a relapse recently, four years after his bone marrow transplant. I've also heard about other people who are in the midst of a relapse, and I think about them a lot, and about the people who are still lying at the hospital and fighting their diseases.
I'm thinking in particular of Svein Kåre, who's in bed at the hospital now, fighting. Please post some kind comments on his blog at www.svekn.blogspot.com.6
Knock me down and I get up again
Thursday, March 5, 2009
I've been pretty miserable lately, and haven't been up to much. I couldn't do a lot for the physical therapist on either Tuesday or Wednesday. But even though I'm making slow progress, I'm incredibly happy just to be home without any infections or other complications. It's almost a month until the three-month checkup. Then I'll finally get to move around in public again! I'm looking forward to having that option again, even though it will also be pretty weird, I think. Everything's going to be strange when I start living normally again. After all, I've been “isolated” for more than six months now. I'm imagining it will be a bit difficult at first—because I'll be unfamiliar with so many people, etc., but it's probably doable. I hope people won't stare at me.
There isn't much for me to do right now. I hope I'll have enough energy to take a walk in the forest, or even just go down the street now that the weather is so nice.
My mom and my sister and I invested in a sewing machine. I'm a terrible seamstress, but I'm super excited about learning how to sew some outfits. We have some old clothes up in the attic that could easily be altered into something wearable. It'll be fun to try.
Otherwise I'm taking photos around the house (now that I can't go very far) and at some other nearby places.
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.
A new perspective
Thursday, March 12, 2009
Today 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 Festiviteten7 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.
The awards ceremony
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 party8 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
The walking wounded
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
&n
bsp; The Ulver concert,
The Quart festival,
A Stockholm trip, and
RaumaRock10
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.
reginestokke
regine stoke blog
allogeneic stem cell transplant
ulver concert
blog regine
epilepsy
face your fear
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?
No hair? No problem!
Tuesday, March 24, 2009
As everyone knows, friendship is incredibly important—especially if you develop a serious disease. Then, you need all the support you can get!
Regine's Book Page 6