Regine's Book

by Regine Stokke

  Beauty is a blue sky.

  Beauty is a starry night.

  Beauty is cats rolling in the grass.

  Beauty is the sound of rain hitting the ground.

  Beauty is deep, dark eyes.

  Beauty is innocence.

  Beauty is love.

  Beauty is insight, strength, and courage.

  Beauty isn't always what people see on the outside.

  Beauty is so many things.

  What is beauty to you?

  Regine's cat Josefine

  The voices

  Saturday, August 1, 2009

  There 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.

  Small rewards

  Monday, August 3, 2009

  There 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.

  Taking a look in the mirror

  Wednesday, August 5, 2009

  Thank 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.

  Enslaved in concert (above) and Regine and Eli Ann with Enslaved band members at Rauma Rock in Åndalsnes on August 7 or 8, 2009

  Photo from Regine's helicopter flight over Trollstigen (the Troll Path) on her way to RaumaRock, August 2009

  Ready to go

  Friday, August 7, 2009

  Here 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.

  RaumaRock

  Sunday, August 9, 2009

  RaumaRock 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.

  We stayed at a hostel, and they were also super friendly and welcoming. There was an incredibly nice lady who organized everything so that it would be as comfortable as possible for me.

  Otherwise, I just have to laugh at the fact that the Andalsnes newspaper snuck a photo of me when our helicopter landed. They put the photo on the front page, but I haven't seen anything quite so blatant in a long time. Oh well.

  The helicopter ride was unbelievable. It was much better than I had thought it would be—just amazing. Much better than going by plane. It didn't even give me butterflies. We flew over Trollstigen, where we saw some amazing natural sights. What could be more beautiful than Norway's vast mountains? It left me speechless.

  Of course I managed to get a urinary tract infection on Friday. We had to wait so long for a taxi, and it was cold outside. Then I had to take a trip to the emergency doctor at Rauma on Saturday to get some pills. But I was well cared for, and luckily things turned out okay. On Saturday I didn't have much energy, so I didn't do too much at the festival that day. The high point was definitely Friday evening! We were backstage for a while, and got to meet Enslaved. They were super friendly people and it was interesting to see the artists offstage. The concert was truly first-rate. They even dedicated a song to me, and I also got a signed CD and a sweater.

  There were some blog readers who came over to me at the festival. I was so embarrassed that I didn't know what to say, but they were really polite and lovely. I was a bit uncomfortable when someone wanted to hug me though, because I shouldn't really have such close contact with people.

  The future

  Thursday, August 13, 2009

  It's difficult for me to see a future for myself after all the bad news I've had. It's really difficult to sit and listen to friends talk about their future, what they want to do, etc. I never get included in those discussions. I don't enjoy talking about it either. It's a sensitive subject.

  I know there's a possibility of getting well, but it's just so difficult to believe that. A relapse after a bone marrow transplant is usually the end for most people, but then you have some who survive. It depends on whether you have good luck or bad luck, and I've always had bad luck. First I learned I had blood cancer, but that wasn't all—it had to be a totally unusual and rare type that is difficult to cure. They say one misfortune rarely comes alone. I've been through tough cycles of chemo that have almost killed me. Three times I've suffered near fatal blood poisoning. And once I had such a serious lung infection that I ended up on a respirator, and my parents were told to take one hour at a time. But I got through all of it. Having to “learn” to walk again was no easy task, and I underwent a bone marrow transplant, too.

  I'd hoped
that I was done with all my bad luck. The transplant procedure went smoothly (relatively speaking), but then I had a relapse after just three months. When I spoke with the doctors at Riksen hospital I was told I was going to die. I still don't understand how I got through those days. I almost think my brain must have an off- and on-switch. Then there was a new hope on the horizon: Vidaza is the medicine that we have to put our faith in. It's the one that will move me toward a new transplant. Can't I have some good luck soon?

  In all, 207 readers responded to Regine's entry. Many, like Bengt Eidem, wanted to encourage Regine as much as possible. Others wanted to give her advice about alternative treatments, something that GSC, who followed Regine's blog closely, reacted strongly to:

  Okay, now I'm angry! Here come all the stories about successful treatments overseas. No two people in the world are identical. Nor are two patients identical. What works for one person could be completely wrong for someone else. Norwegian healthcare is respectable. Is there really anyone who doesn't believe that Regine's doctors are doing everything they can to get her well? I know a little about what Regine is struggling with and she doesn't need admonitions to persevere. Because she's hanging in there like crazy! If there's anyone who knows something about this, then it's Regine herself. I can't believe someone actually had the nerve to say that she has to persevere for those who read her blog! Shame on you! She has more than enough on her hands just fighting for herself, without pushing herself for us, too.

  Continued good luck, Regine. You are phenomenal.

  —GSC

  Yes, Regine—you and your family DESERVE a bit more good luck soon!!! I think there are lots of people who have their fingers crossed for you. I'm so glad to see that you are “living life while you can” to the fullest. Festivals, concerts, helicopters, and much more. I'm positive that so far in your eighteen-year life, you have accrued more wisdom, more memorable experiences, and that you've been through more ups and downs than what most people can manage in 50, 60, 70 years. Continue living life while you can, Regine. None of us can predict when death will arrive, but we can do something about how we use the days we have. Persevere! I cross my fingers for you (and the Vidaza)!

  P.S. Oivind Andre (www.oastiftelse.no/blog/?page_id=173), in his last words to the outside world, encouraged us to “live life while you can.” The blog contains a lot of life wisdom that all of us, healthy and ill, can benefit from reading.

  —Bengt

  A complete lack of energy

  Sunday, August 16, 2009

  Tomorrow it's time to start taking Vidaza again. I hate the thought of it. I'm so worn out and now I'll get even sicker. But it has to happen. Today I couldn't do much more than just lie in bed. It's so incredibly frustrating, when this is the only thing I can do. I so badly want to do things that give me some positive energy. I want to go outside and take photos, and I want to go on walks, but I just can't manage it. It's too hard. I hate not being able to take advantage of my creative side. This might be the reason why I'm so depressed right now, because I'm unable to do what I like. It's difficult to understand why I can't manage anything at all, but there's probably no other reason than the powerful dose of medicine I've been given. You're supposed to get used to Vidaza after a while, but it doesn't seem like it's getting any easier. And I get it so frequently. If I had been in good shape, it would have been so much easier to go through this.

  Back to school—but not for me

  Wednesday, August 19, 2009

  Today's drive to the hospital was really hard for me, because we had to drive past my old school to get there, and today was the first day of school. I saw young students everywhere. I was also supposed to start school today. That was the plan anyway—before the relapse. Damn it, it's so unfair. Many people with cancer say they eventually stop thinking about how unjust it is that cancer struck them specifically, but I never stop thinking that. I wish someone other than me had gotten this cancer. An egotistical, but also very human thought. Who can really blame me for that?

  The last few days have gone well. I received some blood on Monday, and my condition improved a bit after that. The cycle has just gotten underway and I haven't noticed many effects from it yet. Eli has visited me several days in a row, and I'm glad I have her around. She's the only one who's been showing up for me now that I need it the most. I wish I had more people to support me, but unfortunately some have left, and that's awful.

  Eli and I have been baking and watching True Blood these past few days. We're hooked on baking and the series. By the way, we made the world's best smoothie yesterday, which really helped my mood.

  Today I actually voted early. It's important to vote.

  Regine's entry drew comments from 279 readers—most of them to express support and understanding, fewer of them to criticize her “wish” that someone else had gotten this cancer instead. Here's a selection from both sides, along with Regine's answers:

  Hi Regine. I'm a married mother of four and I've followed your blog since I read about you in the paper. I'm a nurse, and I've also studied palliative care. Through your blog I've learned a lot about how a serious illness affects a young person. I've grown to like you from a distance. You have so much life inside you, so much to contribute, so much to teach us. I hope this cycle will help, and that you can avoid the side effects. I know these are just words, but I want you to know that I am someone who thinks of YOU often. Hug.

  —Laila

  My dear. I just have to write to you before I go to bed. You are often in my thoughts when I go to sleep. I'm so glad you have Eli, Regine. Unfortunately, it's true that a lot of friendships dissolve after a while, when the “newness” wears off. It's now that you need them, and I hope the ones who aren't there for you read your blog and realize how hurt, lonely, and bitter one can feel. You must know how much we in your family love and miss you right now. I hope you sleep well tonight. Thank you for managing to write some words to everyone who's following you. Good night, beautiful girl.

  —Hug from a mother/grandmother

  I think most people understand that your thoughts are human. There are many of us who appreciate how honest you are about what you feel and think. You show many different parts of the disease and give us outsiders a privileged glimpse at the insanity you have to endure. It's too bad that you have to receive dumb comments from people who preach about things they know nothing about, when you're being so honest and brave and mature, and daring to show the meaninglessness of this awful disease. Have been thinking of you in connection with the start of school around the country. It IS unfair. I'm glad you have Eli. And I'm glad to hear the last few days have gone well. I hope the treatment starts working now!

  —Respect and admiration from a stranger (26)

  Would it have been better if it had happened to someone else?? So, you are the world's best person, then? Everything is about you now, right?? No one gets to go to school and enjoy themselves if you can't?

  —E

  To the person who asked: “REGINE, how can you say something like that!!??” Um, maybe because Regine is in a true life crisis right now, maybe because she has CANCER, maybe because the doctors have given up on her, maybe because she's young and doesn't want to die, MAYBE…it's because she's a human being that she says things like this!!?

  And of course it's unfair that you, Regine, should get this awful disease! It's completely unfair for you, your family, and your friends. Give this horror to a mass murderer, a child killer, a pedophile, a madman instead! That would be more fair. Unfortunately though, the world doesn't work that way…I lost my dad to cancer when I was fourteen years old, and I understand what you're feeling! I wished it had happened to my best friends’ fathers, my uncles, anyone—just not MY dad! These feelings didn't belong to an evil psychopath without compassion, but a normal, thoughtful fourteen-year-old girl. And today I've stopped walking around wishing that these people were dead…Regine, you are just human and you're allowed to have these thoughts! It's normal…I visit your blog
every day and CHEER you on! And wish with all my heart that you get well and win this unfair fight! Regine, I love your honesty! It makes you so REAL. ☺

  —JEA

  Thank you so much for all the nice comments. ☺ It means a lot. I don't really think the ones who've left me are afraid of being infected by me; it's probably deeper than that. People were good at showing up in the beginning, but when things go on for a long time, it seems as if some of them don't feel like bothering anymore. Rebella: Thanks for your comment; good that you understand. ☺ E: That comment was just totally uncalled for. I suggest that you leave this blog and never come back. I'm being honest in here, and you have to be able to take it. I'm not saying that no one is allowed to enjoy themselves when I can't. That's the dumbest thing I've ever heard. I'm pretty sure if you had to choose whether you or I should have cancer, you would choose me. Tonje: Alternative treatments are not something I have thought of trying. I am already receiving treatment that I think is fine, but thanks for the tip.

  —Regine

  Dear Regine: Of course your thoughts are natural. We're all egotists, and if I had life-threatening cancer, I would also have preferred someone else had it. I'm sure of that. But that doesn't necessarily mean that you should wish cancer on other people. Some people are stupid, Regine, so let's just ignore them. When other people come and tell you what you should think or feel, you can tell them to go to hell. It's YOUR blog and you're not writing any ugly things about other people. My God, people have no idea what things are like for you. The closest I'll ever get to knowing how you feel is when I think about how my father, when he was sick with cancer, was up four days and nights in a row without saying a word. He was probably so sick with thoughts of dying. It was awful! He survived, and is now 100 percent healthy. I really, really hope that a miracle will happen for you, Regine. You're a person the world can't be without. So creative, so competent, so wise. When I compare you with other eighteen-year-olds, I know they seem materialistic and shallow by comparison. And I was like that, too. ☺ You have a lot to teach people. I've learned a lot from your blog myself. I'm healthy and I have my freedom. What in the world am I complaining about?? Small things…And I think more about that now. I'm thankful. Cancer could happen to anyone at all. My goodness, dear Regine, the darkness you are going through is unthinkable for me. There are a lot of idiots who leave harsh comments here, but believe me, Regine, 95 percent are people who care about you. It's sad that some of your friends have disappeared, but be thankful for Eli. ☺ More than anything else, I just want things to turn around for you, Regine. A long, BIG hug from me. ☺