Regine's Book Page 3

  My mood swings annoy me: positive, negative, positive, negative. Why can't I just hit a switch that makes me positive all the time? I hate wasting energy on sadness. But that's probably impossible. In any case, I've made huge progress in that area. In the beginning I was almost always pessimistic. Whenever we talked about the disease, I could only say that I was going to die, that I wouldn't manage to get through this. But I've worked on myself a lot, to try to be more productive with my thoughts. The fear of dying is always there, but I've taught myself to push that fear to the back of my mind—so I manage to have better days with better moods. Sometimes.

  The transplant is coming up fast. Six to seven weeks isn't very long at all. Not when it comes to things like this. I'm both dreading it and looking forward to it. It can be a beginning or it can be an end. It has to be a beginning. I'm not going to be one of the unlucky ones this time. I just can't be.

  The thrill is gone

  Monday, November 17, 2008

  I'm at home, looking through some old pictures on my computer. I miss the old days! I miss the laughter, the fun, the concerts, and all my friends. Someday I'm going to get my life back like it was before. Someday.

  Regine's entries soon started to draw even more comments and responses. Her best friend Eli Ann's encouragement is representative of the 27 other people who commented on this entry:

  Hi, Regine. Even though I talk to you every other day, I still feel that a small comment is in order. I think it's so great that you've started to blog, and found a way to channel your feelings. I hope people's eyes are opened to how fast things can turn upside down (something you know all about). Three months ago we sat at a café planning “drink night,” and six hours later we were sobbing at the hospital. Life is full of surprises. You've been so strong, and I don't think anyone could imagine the hell you've been through over these last few months. When you get well, we're going to live life to the fullest, and restart all the trips, concerts, parties, and other everyday things we used to take for granted. Now you just have one thing to do: Beat the shit out of the cancer so we can all get you back. Love you. ☺

  —Eli.

  Home sweet hell

  Friday, November 21, 2008

  My immune system is gone. I'm in hell. It started yesterday. I could feel it in my body. It's starting now, I thought, but it took a while before the infection really kicked in. It finally happened tonight, right before I was going to bed. At first it was a fever, then chills. Some people might think it's just like shivering when it's cold out, but it's way worse. You have to just lie there while you go on shaking uncontrollably. I had trouble breathing and talking because of all the trembling. Finally I threw up, and that went on for a pretty long time before it finally stopped. That happened twice during the night. So it's pretty safe to say I didn't sleep at all. It's probably blood poisoning. They took blood samples and sent them to the lab for cultivation to try to find out what kind of bacteria might be in my blood. In the meantime, I think the antibiotics have worked—I've been in good shape since eight o'clock this morning. I hope it lasts.

  I spent the night in the intensive care unit. I didn't want to go, but my blood pressure was so low that they felt like they had to send me there. Some of the doctors tried to force me to insert a urine catheter and a tube in my chest for draining fluid, but I refused. Why should I have a urine catheter if I can manage to go to the bathroom myself? It makes me so angry. For one thing, it's incredibly painful, and for another I can't get out of bed when it's in. Do they want that? I'm not supposed to be here for very long anyway, so why start messing with something?

  I was right, and now I'm actually sitting back in the Children-4 unit again. Luckily the nurses down in intensive care were easygoing and helpful. But for all that, I don't want to be there. I hope there won't be any trouble tonight.

  Daring

  Sunday, November 23, 2008

  Maybe I'm being a little too aggressive, but I think it sort of helps me accept things somehow. Up until now only my parents, sister, and nurses have seen me like this.

  This post resulted in 220 comments. Regine's closest family, as well as strangers, wrote in to offer their support. Many also thanked Regine for her openness and for the way she put life in perspective. Here is a small selection:

  We think you're beautiful like this too, Regine. (You have such a nice head.)

  —Grandma and Grandpa

  Agree with Grandma and Grandpa. ☺

  —Elise

  Can imagine that was a difficult decision but a step in the right direction. Still more proof that you are tougher than most folks. And as cute as always.

  And it won't be like this forever.

  —Martin

  You've lost your hair for now, but what's important is that you haven't lost your clear head. No one can take that from you. Hope you have a good day. Many good thoughts from us in Kokkolav.

  —Grandmother and Grandfather

  Hi Regine, You got the same Christmas haircut that I did. No one knows how much this haircut costs, emotionally, until they've had to experience it themselves. I've also struggled through losing my hair, and after fourteen days I finally just cut it all off. But it resulted in lots and lots of tears. (I also had long, thick hair.) So now I suppose we're both skinheads—you and me! I think you're tough—and you have a gorgeous head!! I'm running around wearing hats and emergency wigs. It's good to have the hat at night—because it's cold when you're bald! Hope you have some good days now!

  —Leva

  You're totally tough! And do you know what? I've decided that when I have a baby girl, her name will be Regine! Just wanted to say that, since that's your name. ☺ Hang in there. You're gorgeous just the way you are! Hug from me. ☺

  —Marita Petrine

  I totally understand that you miss your beautiful hair, but luckily it will grow back. You're beautiful now, too! When you start to get better after a while, I thought it would be nice for you to try expressing yourself on a canvas.

  I am sure it would be an interesting painting: expressive and full of feeling. Do you remember when you took a painting class with me? You already knew that you had talent. One day when you feel like it, you can visit my home studio and paint (maybe bring a CD that you'd like to listen to at the same time). It is so liberating and it will definitely be an exceptional painting!!

  —Best wishes from Else, who currently has a painting exhibition at the beautiful Water Tower in Nesodden.

  Waiting time

  Tuesday, December 2, 2008

  The reason why I haven't written in a few days is just because I don't have anything new to report. The last few days have all been spent waiting. Waiting to go home again. The only thing I needed in order for that to happen was for my blood count to go up again after the bone marrow biopsy—and it did! Thank goodness! I had crazy butterflies in my stomach before I got the answer. I was scared to death that the results would be bad, but it's actually never been better than it is now. I was so incredibly relieved. But there's one more thing the doctors have to decide on: Do I need a new cycle?

  It's a month until the transplant and it seems unlikely that I can go a month without chemotherapy. Even if my bone marrow is fine and almost free of cancer cells, it doesn't mean that the cancer is gone. It will flare up again, but no one knows when. My doctor absolutely doesn't want me to do another cycle, so she's doing everything she can to reschedule the transplant for an earlier date. She didn't think it would work, and the doctor in Oslo is difficult to persuade. Maybe they don't have room for me yet, or maybe they don't want to have too many patients in the hospital over Christmas. Still, I have trouble understanding why it has to be so difficult to go down there now. I want to get started right away. Just to get it over with.

  The upcoming plan is, as I said, a bit unclear, but we received a call from a nurse a while ago who said we should go to Oslo in a week to switch out my catheter (the one sitting in my chest, which is used to take blood tests and administer medici
ne) and to do the laparoscopic surgery10 to take out part of my ovary. They'll also take a bone marrow biopsy to check if the number of cancer cells has increased at all. Then they'll revisit the question of when I'll have the transplant. There can still be changes. It will be interesting to see.

  In the meantime I'm going to enjoy myself at home!

  A wasted journey

  Tuesday, December 9, 2008

  So we drove to Oslo, as planned. The first thing I had to do when we got to the hospital was to have a blood test and a bone marrow biopsy. We had to do it without anesthesia this time too, but I still didn't dread it as much as last time. The doctor gave me some pills to relax. I really wonder what kind of pills those were, since I got a laughing cramp from them, even though I didn't have any real reason to laugh. I want more of those pills.

  The bone marrow biopsy was taken from my chest bone this time. It was painful, but it was definitely better than before. Everything is better when the doctor is nice.

  Afterward we talked a bit to the unit nurses. I was going to get to see an isolation room. It actually looked pretty good (for a hospital room, that is). The room was pretty big—it had a DVD player, a TV, and a big bathtub. It was even possible to walk outside in the fresh air. On the other hand, it's not so exciting to know that I'll have to be here for up to six weeks.

  Later in the day, we were supposed to speak with the gynecologist. This turned out to be a pretty unpleasant meeting. I got the unexpected news that I was infertile. The way she said it (“the case is hopeless”) wasn't very nice either. It turned out that they knew from when I was there before that I was infertile! You have to start wondering what they're up to. They'd dragged me down to Oslo for no reason at all. They clearly knew from last time that I was infertile. I got seriously annoyed and frustrated. I wasn't ready to hear that I was infertile. I had been going around thinking I had the option of removing some eggs. How could they be so careless!? Even worse, I had a bone marrow biopsy when I didn't even need one. The reason for the Oslo trip was clearly just for the operation. Nothing else was going to be done. Well, at least the bone marrow biopsy turned out fine.

  I've cried a lot. I'm so sad, so frustrated by everything. It's incredibly tough to experience defeat after defeat. When will all this stop? Just when I think everything is as bad as it can be, it gets even worse. The transplant—I'm dreading it so much. What else is coming?

  I imagine the pains I'll have to go through, and I'm scared. The plan is for me to be admitted to Oslo on January 5. It will be a long and anxious wait. In the meantime, I'm at home, and I hardly know anything about what lies ahead.

  Chemotherapy again…

  Friday, December 12, 2008

  Today I learned that I need a new cycle. I actually knew that this was coming. Still it's not good news. Luckily, this cycle will be milder. The goal, for me, is to just not get any sicker, but you never know. Have to start tomorrow or Saturday.

  Regine and Eli Ann, before Regine's diagnosis

  The question is: Will I get to go home for Christmas?

  When I get well, I won't be able to stop smiling.

  No one knows

  Saturday, December 20, 2008

  You've probably started wondering if everything was okay, since I haven't written for so long, and so I just wanted to let you know that everything is going fine with me! I've been at home since Monday now, and things have been pretty good. Cross all my fingers that I get to be at home right until January 5. I can't handle another blood poisoning. I want to stay healthy. I've received the treatment schedule from Riksen11 now. That's when you become aware that it's really approaching. I feel a little reassured when I read the letters and brochures from Riksen. It says you should take things with you—things like cards, board games, etc., to occupy yourself while you're there. It gives me a tiny hope that the stay will be pretty easy—that it will only be kind of boring—but inside I still know it will be really tough.

  I'm so incredibly tired and feeble lately. But I hear that it's normal to feel that way after everything I've been through. I wonder if you know what I mean by the word “feeble”? When I say that I mean seriously incapacitated by fatigue. I can't even do the most basic tasks—like buttering a piece of bread—without having to sit down after a few seconds. Luckily it's not so bad all the time.

  Over the last few days, I've been able to go to the physical therapist, get home schooling (I took a history test), visit with friends who stopped by, and even paint a bit. Good to do some “normal” things, even though everything here is pretty far from normal. So while everyone else was at the Christmas dance, and going to parties and having fun, I sat at home and studied for a history test.

  My blood values are sinking (totally normal), and as of yesterday we found out that I need some more blood. And that's not an easy task here in the city. I have to have irradiated blood because of the transplant, and they don't have that here. So they have to order it from Trondheim. In fact, my blood is going to come with the Hurtigruten,12 but I won't get it before tomorrow. I'm a little worried that it will take too long, but I'm still counting on it going well overall.

  Yesterday I read online that bone marrow transplants don't help with MDS. Got so irritated with both the internet and myself. I shouldn't read anything about it, since this isn't relevant anyway. All the doctors say I'll get well, and I trust them more than the internet.

  Old branches are the hardest to break

  Thursday, December 25, 2008

  Christmas Eve was much better than expected. I wasn't actually looking forward to it very much. Was thinking the whole time that I didn't need gifts, and this year I hadn't bought any either. But Christmas Eve is about more than gifts, of course. The nicest thing is being able to spend time with family. Grandma and Grandpa visited and so did my cousin. It was super nice and everyone gave super nice gifts. Among other things I got a flatscreen TV (I'm so spoiled!), a dress, CDs, DVDs, makeup, and lots of other stuff too. The best gift I got was from my two best friends. They made a photo album with a lot of pictures in it. The pictures were of us for as long as we've known each other. In other words: a successful evening all around.

  My thoughts go out to everyone who had to spend Christmas Eve at the hospital. I hope you had an okay time, all things considered, even if it wasn't the same as being at home. Luckily Christmas comes around every year. ☺

  Losing sight of the goal

  Sunday, December 28, 2008

  It's a little more than a week until I go to Oslo. (Help.) And I have a cold. (Bad timing.) Hope I get well before I travel. I'm thinking about the transplant a lot lately—probably way too much. Hardly five minutes go by without me thinking about it. I wish I was going into this without any ideas or knowledge of what was about to happen. Ignorant about all the painful things that can happen. Now I know way too much. I've read a lot about the transplant. Read about the pain. Read about the relapses. I've never dreaded anything as much as this. I'm scared. More accurately, I'm terrified. Thinking of death. Death is sinister. That's what I fear most of all right now. I don't want to die and be separated from my friends and my family. Don't want to leave them behind, depressed. I want to live more, experience more. Will I ever get out of here, out of this prison?

  “Sorrow's Chamber”

  Tuesday, December 23, 2008

  The echoes of silence set the hour.

  Choked by the chains of depression, I fall away.

  I won't be trapped behind the wall of sadness.

  I'll finally do what I want—I'll leave.

  Did I drink too much from the cup of life?

  Did I take happiness for granted? Was I vain?

  My fight against this emptiness, this drunken sense of death,

  Is all that I have left…It's all that's mine.

  In my loneliness I still know

  That I have none to thank but myself.

  This is why I remain calm,

  As the rope pulls tight around my neck.

  �
�DimmuBorgir*

  *Norwegian black metal band that derives its name from an area in Iceland called Dummuborgir, which has unusual volcanic rock formations. Dimmuborgir means “dark cities” or “dark castles” in Icelandic, Faroese, and Old Norse.

  Eighty-seven bloggers commented on Regine's entry, among them her good friend Martin, and Anne Marie, a relative of cancer patient Svein Kåre:

  As I've said before (the last time being earlier today), you have nothing to fear. This is a war, but the resistance movement on your side is effective. ☺ In a while, and probably sooner than you think, you'll be able to look back on what's going on now as a finished chapter—and then you can start a new one.

  Because with every day that passes, you're one day closer to getting well—or getting free, to borrow your metaphor.

  —Martin

  Hi, my dear Regine. I know you've visited and read about us. I hope we'll get to meet you when you come here—we'll probably be here until you come. It's a fight…it's tough…but if you fight to survive, you can do so much!!! You find strength you had no idea you had, and the bad/sucky days all end eventually. There are better days ahead, I know it. You've had bad experiences already because of the disease, and that helps you, even if it doesn't always feel that way. Knowledge is both good and painful. Use what you've learned to make yourself strong and prop yourself up. The fact that you're able to read about others shows how incredibly tough you are—most people aren't brave enough! Hang in there! We're rooting for you!!! Over here we've celebrated Christmas Eve today and had a great time!!! SK has gotten much better and we're doing well!! I wish you a speedy recovery from your cold!!!