Regine's Book

by Regine Stokke

  My blood tests have at least been stable, but blood tests aren't everything. On Monday I'm going to Trondheim for a bone marrow biopsy. I haven't been over there for a while now. I don't have any idea what to expect, but I probably shouldn't be too optimistic. I've been through around four to five cycles of Vidaza now, and they say you need to have six before the medicine really takes effect. I'm really anxious about the results. I almost don't want to know what they are, just on the off chance that they'll signal the end. I need motivation, and if the test shows signs of improvement, it'll be easier to carry on. If it looks really bad, or if the numbers haven't improved at all…then I'll be crushed. I'm tired of the uncertainty though. Once I see the results, I'll have a better sense of whether or not it's worth continuing.

  I just want to be myself again, but something is telling me it's never going to happen.

  From bad to worse

  Saturday, September 5, 2009

  Things aren't going very well these days. I've gotten even worse. I don't know exactly what's going on though. It started with some stomach pains on Monday. Was examined by a doctor on Wednesday, but it's hard to give an accurate diagnosis when all you can do is just press on my stomach. My other pains have also gotten worse—especially in my muscles and my bones. I have trouble walking. It doesn't help that I get headaches either. No, it's just misery, you guys. I've probably gotten some kind of virus. I've also had a fever these last two days. In the evenings. But I haven't had the energy to go to the hospital. Hopefully it won't get too high, because then I'd have no choice: I'd have to go to the hospital.

  Tonight I'm planning on watching the Norwegian national soccer team play. I've even bet money on the game. So despite everything, I'm pretty excited about that.

  Yesterday I got a package from the Record Company. I got Magnolia, 12 Monkeys, Spider, The Rules of Attraction, Naked Lunch, and Tool's Undertow.

  So at least I'll have something to do for the next few days. Can anyone recommend some other movies?

  I found a picture of myself in London from last year. I want to go back! I miss just being able to do things like that. It's crazy to think that was only a year ago. Things sure can change fast.

  Regine in London, Easter 2008

  Arrival in Trondheim

  Tuesday, September 8, 2009

  We checked into Trondheim yesterday morning. They took a lot of blood tests and I went through several examinations. They also took an X-ray of my lungs and an ultrasound of my stomach. Everything looked fine there, so at least my organs are in good shape (amazingly enough). My spleen was bigger than it should be, but that's the way it is when you have leukemia.

  Then this morning I had to be anesthetized so that the doctors could take a bone marrow biopsy and get some spinal fluid. (I had to lie flat for two hours after it was over.) I'm not sure if I'm supposed to get the results today or tomorrow though. They were going to take a long look at the marrow before planning our next move.

  My marrow isn't in good shape—we all know that. The question is, has there been any improvement? Because about a third of my blood is made up of blasts right now, we also know that there are some cancer cells in my marrow, so we're trying to figure out if Vidaza will help. It's the next steps that I'm interested in, but I also understand that they're not going to provide a definitive answer now either.

  In the eye of the storm (again)

  Wednesday, September 9, 2009

  I'm back home. My bone marrow has improved a little. Not many AML cells are left, but now I've got myelodysplastic cells instead. They're less aggressive, but I don't think the overall percentage has really decreased at all—the cells have just changed. On the other hand, I do have a few more healthy cells now. I'm going to keep taking the Vidaza. I'll probably be on it for quite a while longer. The doctor said I might need to keep taking it for a whole year.

  I don't know what I think about the next steps. I want to get well, but I don't have the strength to sit here like this for twelve more months. I'd rather get well right away, of course, but it doesn't work that way. I don't even know if I'll ever be well again. It looks like I have a tough time ahead of me.

  But my god, I'm so glad things have improved! I just have mixed feelings about the future. There's so much I still want to do.

  I want to live normally again. I'm struggling with depression, and I don't know exactly how to motivate myself and hang in there.

  9/15/09

  Tuesday, September 15, 2009

  Things aren't getting any better. I sort of thought I'd gotten rid of the fever, but it just refuses to go away; it comes back every other day or so now, and no one knows what's causing it. But anyway, after I got back from Trondheim, I thought I would try getting into better shape. The Vidaza is doing its job and keeping me from catching anything new, but it doesn't do any good if I have to just lie around here at home. So I thought I'd try to go on daily walks. But of course it wasn't that simple, and on Saturday I got this headache—which is literally the worst headache ever. I can't sleep very well because of it (or I guess now I should say because of them), and every time I wake up, I can barely manage to move my head it hurts so much. None of the painkillers do any good either. It's even hard for me to stand up. I guess it's a little bit better today, and hopefully that will continue. This is all because of the spinal chemo.

  On another note: You shouldn't take what I said about “one year” too literally. Nobody has given me a sell-by date, as some people thought. It was only a way of saying that maybe I'll be someone who needs to be on the drug for a long time—and that sometimes those people need to take it for up to a year. The malignant cells could still come back and ruin everything, or the Vidaza could lose some or all of its effectiveness in knocking out the cancer cells. The last time I checked, I was supposed to have two to three cycles, but they don't want to give it to me if it's not working, because it makes me so sick.

  If I don't see any improvement soon, it will be hard to keep going.

  I wish things would get better

  Sunday, September 20, 2009

  I've been sick ever since my last post. My energy is at a low point and the pain is wreaking havoc. I haven't been up to seeing any visitors.

  I spend my days lying in bed and on the sofa. That's all I can handle. I have a fever almost every night now and no one knows why. It doesn't seem to be going away; it's hopeless.

  Last weekend when I thought I was starting to get a little bit better, I planned a small “vacation” in Trondheim. The Cancer Society has an apartment they lend out, and I thought that maybe I could borrow it for the whole fall vacation week. By then the Trondheim culture festival (aka “The Week”) will have started in Trondheim, and there are a ton of concerts to see. So yeah, I ordered three concert tickets and reserved the apartment. But it's only two weeks away now, and I'm really worried that it just won't work out. With the shape I'm in now, it's just not realistic.

  I just wanted to take a break from all the misery and somehow enjoy myself a little in Trondheim. Go to the shops, cafes, and concerts, and just relax. We'll see what happens.

  My appetite is totally gone, too. I eat just two meals a day, and that's nowhere near enough. After all, I don't want to totally waste away. So if anyone can suggest something simple and easy to eat, I would be really grateful.

  I'm proud of myself

  Tuesday, September 22, 2009

  When I got up today, I was just as worn out and exhausted as ever (and didn't show many signs of improving, either). But I had to do something, I thought. I can't just wither away in here on the sofa. After all, I'd decided to exercise more to try to up build my strength. So even though I was weak and tired, I got myself dressed and went outside. I walked up the neighborhood hill and then back down again, and after that I walked a little behind the house, in the forest. When I got home, I was completely exhausted—but I was smiling anyway, because I'd done it.

  This wouldn't be exercise for you healthy people, but for me it is, an
d it really helps. I felt so much better afterward. I took a bath and fixed myself up and rested. I haven't put on nice clothes and makeup in about a month. It felt good. I felt more upbeat. Then later on, Ida came to visit, and we chatted and ate raspberries. It's been a good day. Finally.

  Regine's entry generated 232 responses, in which readers expressed their happiness about her progress. Here's a small selection:

  So incredibly good to hear, Regine! That made me so happy! ☺ Stop by your blog about five times a day, and have been a regular reader for the past six months. Your writing is so inspirational!

  —Oda

  I'm so proud of you that I don't even know what to say!!!! SO great that you managed to be proactive about your happiness and wellbeing—happiness can truly be found in the little things, and after a while you see that those so-called little things are actually the biggest things of all, because the simplest pleasures are the best. ♥ I actually got dizzy just from reading this—I'm so happy for you, and so incredibly proud of you!

  —Rebella

  This is the best thing I've read in a long time—and I hope you'll continue to defy this horrible cancer!! I'm so proud of you—keep it up! ☺

  —Greetings and hugs from a grandmother in Nordmore

  Good evening. I'm a woman with a son who's almost seven and a fifteen-month-old daughter. My partner is in school and (as a result) only home on the weekends. My days are often stressful and exhausting. I first heard about you and your blog in April, but as soon as I started following your story, I was deeply moved by all you had to say. I've only written one comment, but it was probably from around the time that I started following you. I'm also fighting a daily battle as a recovering drug addict. Following your blog gives me something. It's simple: Your words help me to value life and try to get something positive out of each day. It's not always easy to be happy about your lot in life, but if you look hard enough you'll always find something…Most importantly: Face your fear. Accept your war. It is what it is…

  What you managed to do today—taking this walk—was a victory in and of itself!! I admire you so much—you're a very special person!

  —Warm greetings from Linda

  GOD BLESS YOU, REGINE! Now I'm crying for you—with tears of joy. That you managed to dress up and take that kind of a walk says something about what you're made of. This mental strength of yours is what will get you through this. (And maybe some more short walks will help build up your appetite, too.) But be careful not to wear yourself out—you probably need a lot of rest now. I—along with thousands of other people out here—wish you the very best in the days ahead, and I pray that you get the strength you need to get through the hard parts as well.

  —Little old lady

  Regine, you should ALWAYS be proud of yourself. Do you know why? Because you're Regine—and you'll never be anything less. And that's a lot, isn't it! ☺

  You're an inspiration!

  —Big hug from Linn Inger

  You go, girl! If it's any consolation, you're probably in better shape than I am. I get worn out just from walking up the stairs. Haha. No kidding.

  No, really—I'm proud of you! Besides, you're the prettiest girl in the world. ☺ I totally agree with Linn Inger above: You should be proud because you're Regine, and no one else.

  You're the coolest person in all of Norway!

  —Sofsen

  Read Linda's comment. You're a phenomenal inspiration for so many people. Running a marathon is peanuts compared to you just getting off the sofa and hiking around the neighborhood.

  I hope that people understand what kind of strength and courage you actually have.

  Good luck getting further up that hill.

  —GSC

  Really great to read about this experience. You should definitely be proud of yourself! I'm proud of you! Truly a medal-worthy performance!

  —Espen

  Hi! My heart aches for you, Regine. You're so young and you deserve the chance to enjoy your life. I really don't know how to express the way I feel about you and your situation. I'm a mother of three from Varmland in Sweden who's followed you for a long time, and although it's a thoroughly depressing situation that you're in, I don't feel sad after reading your blog; instead, I feel inspired. You should be proud of yourself, Regine. You're a real giant.

  —Hug from Maj-Liss

  Yes! I also take walks in the neighborhood…I suffer from arthritis and have to move around every single day, no matter how painful it is. ☹ A short daily walk with my cat makes a big difference for me, but it's not easy. (I'm pretty lazy by nature, so it's doubly hard, haha.) Even a short little walk can make a world of difference …

  My dad had the same disease as you, and he was frequently feverish. On the other hand, he also had periods when he was just fine. He lost his taste for food when he felt the worst though. Have you lost your appetite, too?

  I have to add that my dad didn't wind up dying from leukemia. The treatment worked for him, but then he suddenly had a heart attack—and that was that.

  I'm wondering if you have the latest Dan Brown book? I have it on tape and can put a copy in the mail for you, if you like ☺…so that you can listen to it when you want to. It's in English though, but that probably isn't an issue for an eighteen-year-old. (The original language version rocks.)

  Feel better soon. You're really impressive. I'm crossing my fingers for you.

  —Knut, a neighbor (sort of)

  And the water takes hold

  Friday, September 25, 2009

  I took photos today. For the first time in forever. The fall weather isn't great, but I went outside anyway.

  It felt good to feel the wind on my face. The air was refreshing, and it seemed like it gave new life to my thoughts.

  Alone time

  Sunday, September 27, 2009

  It's raining outside and I'm all by myself, but feeling just fine. The house is empty, and that doesn't happen very often. I've always loved being by myself—always appreciated the chance to just sit down and watch a good, thought-provoking movie (or do something else like that). My privacy flew out the window when I got cancer. Suddenly everyone needed to know everything about everything. All the strangers in lab coats. When I was at the hospital, they never left me alone. They were in and out of my room all day. They dropped in even if they didn't need to. Being at home isn't the same as it used to be either. I used to be home alone more often. But that almost never happens anymore. Today I am though, at least for a few hours.

  Later I'm going to watch Roswell. It's good entertainment. I'm thinking about starting the third Stieg Larsson book, too. Either way though, I'm going to see The Girl Who Played with Fire tomorrow, and I'm really looking forward to it.

  Josefine attacked my foot in bed last night and I got a cut on my heel. Bad kitty.

  Carry, by Isis*

  Sunday, July 19, 2009

  And the water takes hold

  Fills his lungs and crushes his body

  Dust floats through sun and water

  As you draw close

  Fall to me

  He sees like he's never seen before

  I will carry you

  True and free

  And the water carries him away

  Now that you're here

  You'll swim with me

  Soon he ceases to be at all

  I am clutching you

  True

  He sees like he's never seen before

  He is light in the water

  *Isis was a post-hard core/post-rock band active in the late 1990s and the 2000s. They announced their retirement in 2010.

  Erratic days

  Friday, October 2, 2009

  The last few days have been super erratic, if that makes any sense. One day I feel fine, but the next day I wind up with terrible pains and a fever. The blood tests weren't very encouraging earlier this week, and that made me even more anxious. I've been thinking the worst, but my thoughts haven't been too negative today. Everythin
g changes so fast from one day to the next. It would be much easier if things didn't always change so much. But every day there are different answers and new questions. Maybe it's just me who gets hung up on this stuff. I don't know. I'm still hoping the trip to Trondheim next week will be nice, in spite of all my pain and discomfort.

  By the way, The Girl Who Played with Fire was amazing. The book was better of course, but it's always like that. Thanks for the tickets, Caroline Movie Theaters!

  I'm having a hard time answering all your emails lately. I get so many! But you'll get answers eventually.

  Take me out

  Sunday, October 4, 2009

  I'm really looking forward to the Trondheim trip! I just hope I'll be in good enough shape to do everything I want to do. As I mentioned earlier, things are up and down these days. I still get fevers, and the pain is always there, but I'm hoping it'll get better next week. I'm wondering when I'll need to start the next cycle. The doctor's going to look at a blood smear tomorrow, and he'll make a decision after that. Hopefully I won't need to do it next week. That would be disappointing (not to mention boring). But if I have to, that's the way it is. My health comes first.

  I don't know what to pack exactly. Painkillers and warm clothes, definitely. One of the concerts I'm going to will be outside. I'm a little worried about that performance, since it's insanely cold in Trondheim right now. On Thursday we're seeing the Eagles of Death Metal, and on Friday we get to see Franz Ferdinand. Really looking forward to it! When I get back, I'm also going to see Gåte.