Regine's Book (8 page)

I'm looking forward to going to concerts again when I'm healthier. Today I've dared to look that far ahead at least. My mood has swung pretty violently between highs and lows today. I've looked back on the past and forward to the future. And I've thought a lot. It's not always that easy to look ahead. Everything seems so endless. I've been in this so long that it's difficult to see a life outside “the walls.” When I look at pictures of myself before I got sick, I can hardly recognize myself. The illness has left its mark on me, both outside and inside. I
know that my life will never be 100 percent normal again, but I hope I can do well when school starts again (along with everything else). It's almost as if I'm afraid to plan for school in the fall. I'm scared of disappointment. The nurses and doctors are happy that I'm thinking so far ahead, and that I want to start school again, but still they always tell me that I might not be able to handle it. That's hard to hear (even though I know they're saying it so that my expectations will be realistic, and so that I won't get too disappointed if it doesn't work out that way).

By the way, eating is going much better. I've been able to take all of my pills. The doctors say that I've come a long way already, and that I should be happy about how quickly things have progressed. But they also made sure to say that I still have a long way to go.

On another note, I just want to say that I think it's tragic that they've started “developing” the forest behind my house. They're going to build roads and new houses there. I almost started crying when my sister told me about it. How could they ruin something so beautiful? That forest is one of my favorite places in the world. I have so many great memories there, and it was such a big part of my childhood. In bad times, I've looked for comfort and inspiration there, and even when things are good I love taking photos there. What's going to happen to all the wildlife that lives there?

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

Sunday, February 1, 2009

W
ell, 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.

Friday, February 6, 2009

T
he 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.

Tuesday, February 10, 2009

T
he 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.

Friday, February 13, 2009

B
elieve 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.

Thursday, February 19, 2009

Y
ou 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
.

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

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.