Kristin asks:
Question: How do you want to celebrate your eighteenth birthday?
Answer: If I wasn't sick, I probably would have gone drinking with friends and enjoyed myself. That would have been great.
Marte asks:
Question: Are you a Christian?
Answer: No.
Question: How did you experience the transition to “hospital life”? Were you scared of shots and other stuff like that, or have you gotten used to it now?
Answer: I've never really been afraid of shots, even though I know how unpleasant they can be. I don't need that many shots because I have a Hickman catheter. It's located above my breastbone and can be used to take blood tests and deliver medications. The transition was tough. It was a pain to have so many people around me all the time. I had no privacy—something I really need. I wasn't alone for ten weeks. It was a pain to be woken in the middle of the night by nurses who came into my room, and it was a pain to be woken up at the crack of dawn to take blood tests. It was also exhausting to have to drag around the stand that I was attached to, where they hung the chemo and the fluid.
Question: Do you watch a lot of TV? What are your favorite shows?
Answer: You're condemned to life as a TV slave when you get sick. I love Twin Peaks. It's not on TV anymore, but you can buy it on DVD. It's brilliant.
Question: What's the high point of your day?
Answer: It varies from day to day, but it's always nice when friends come to visit! ☺
Ingvild asks:
Question: I'm not sure if you mentioned this already, and that I just didn't catch it, but do you know how you got this disease?
Answer: It was totally random. It could have happened to anyone.
Isabell asks:
Question: If you recover completely, and all your dreams come true, is this an experience you would have rather not had, or do you look at it as a kind of character-building life experience? How has it changed you as a person?
Answer: That's a difficult question. I've changed a lot as a person, and a lot of my views have changed. But I would rather not have had this experience.
Photo documentary
Friday, May 22, 2009
Today I was out with Per Erik and took photos. It was so nice! It feels like I haven't taken photos in ages. The weather was fantastic, and we had a beer together outside.
(“I took a photo of frozen ice,” I said at one point. I actually said, “frozen ice.”)
Being outside today shows that that we've gotten the infection quickly under control, and I haven't had a fever for several days now. (Luckily.) But my immune system hasn't gotten any better yet, so things could still change. On the other hand, my blood percentage went up today all by itself, and that's a sign that my bone marrow is starting to work again. So maybe my immune system will go up soon, too. I hope so.
I'm on my way
Tuesday, May 26, 2009
So I drove up to Trondheim on Sunday. I had an appointment for a bone marrow test. Actually, I wasn't that nervous this time. The doctors warned us in advance not to expect too much. My cells haven't “woken up,” so I don't have that many cells yet. I think they said they only saw fifteen, which isn't much! But on a positive note, the fifteen cells that they did find were all healthy! They didn't see any cancer cells! That's about as good as things can be for now. So we drove home again on Monday afternoon. I had a headache and felt a bit giddy. I always get headaches after anesthesia.
So what's next? The tentative plan is for me to stay at home for two weeks and get a bit better before my second bone marrow test. It's too early to know if I'm already in remission, but we'll know more in two weeks. Ahh, I'm really looking forward to being at home. They told me I had to come in quickly if my white blood cell count goes up suddenly, but we have to be positive and count on that not happening. Being home for two weeks means that I can
go to the Ulver concert this Saturday; and
celebrate my birthday at home next Saturday.
I'm so happy! I really hope I manage to stay healthy enough for both of those. You're probably thinking that this was excellent timing, but as usual I'm worried about getting too optimistic.
After the bone marrow test next week, we'll hear more about next steps. I'm pretty stressed right now, since everything is still up in the air. I want them to plan the next transplant. They obviously need to do it differently this time, since it didn't work last time. But I'm worried that nothing's going to change.
The doctors also talked about wanting to put me on Vidaza again. I'm skeptical, since it didn't work the last time. After I started taking it, the disease really took off. I don't want that to happen again. But I also understand why they can't plan another transplant until they know whether or not I'm in remission.
I hope I'll have a better sense of what's next after the next bone marrow test, and I hope I agree with the plan! But whatever happens, for now I'm just focusing on enjoying my time at home.
I love looking through old photos right now. It brings back good memories, but at the same time it makes me sad because it feels like that part of my life is over. See how good I look in sunglasses (not)!
The wanderer
Thursday, May 28, 2009
Earlier today I went to the movies with my parents. We saw Angels and Demons (a fantastic movie!—but of course the book was much better). Have you read the book/seen the movie? I love Dan Brown's conspiracy theories, and hope his next book comes out soon. We had the movie theater to ourselves, and got to see the film for free. Thanks so much to all the theater employees! It blows my mind that so many people care enough to organize something like that for me. And it's not very often that I can go to the movies these days.
Through the years
Wednesday, May 27, 2009
Dress up
Regine age three with newborn sister Elise
Later, I met Anne Marthe and Eli Ann. We watched three episodes of Twin Peaks. I think I've gotten them hooked on the series. It's just brilliant.
I also just want to give a quick thank you to the fans of the Kristiansund BK soccer team. They raised more than 9,000 crowns during today's game against Alesund. Great initiative!
www.nrk.no/nyheter/distrikt/more_og_romsdal/1.6627347
The only thing I'm not happy about in that article is that they wrote that the Norwegian doctors have given up. That's not really true, even though they're not sure where the transplant will happen (if I get that far).
I've worked on some new photos. Here are a few of them.
1 Quart is short for the Quart Festival—an annual music festival in Kristiansand.
2 Dagbladet is one of Norway's largest newspapers. It's done in a tabloid style, and on Fridays Dagbladet publishes a special issue devoted to pop culture and young adult issues.
3 Artist and art teacher who commented on Regine's blog in November.
4 Local TV news stations.
5 In support of Regine Stokke.
6 Blog-publishing service that posts “top lists” of its most read and active blogs.
7 Annual one-week international photography event.
8 Ann Olaug Slatlem is a volunteer with Nordic Light.
9 See artwork on page 127.
10 Line Victoria Husby is the program director at TV2 television station who followed Regine's blog from the beginning.
11 Movie about Nazi zombies in the snow.
12 Blogger and Regine's friend.
13 Artistic director of Nordic Light.
14 On April 17 Regine's blog moved from the twentieth most visited blog on www.blogg.no to the second most visited blog, and on the same day, NN asked his blog readers if she deserved a top spot on the list. NN blogs about fashion, makeup, and his life.
15 Maren-Sofie blogs about living with ALL (acute lymphoid leukemia); Anne Marie is the wife of cancer patient Svein Kåre Handeland, who passed away in March 2009; and Sofie Frøysaa is the blogger known here as Sofsen.
16 Fro
m the children's book When the Robbers Came to Cardemom Town (Thorbjorn Egner, 1952). Residents of Cardemom Town live by the law “You shouldn't bother others, You should be nice and kind, And otherwise you can do as you please.”
17 Platelets help stop bleeding by forming blood clots. With leukemia, the abnormal white cells crowd out healthy blood cells, including the platelets.
18 Traditional folk costumes that vary from region to region.
19 Norway's national holiday.
Summer, 2009
Ulver—the concert
Monday, June 1, 2009
After a lot of planning, everything was all set for the Ulver show on Saturday. They were going to be performing at the Literature Festival in Lillehammer, and this was the first time in fifteen years that Ulver was playing live, so people from all over the world came to see them. (Some even came from as far away as Alaska and Brazil.) It was definitely an historic evening for Ulver fans.
And I was lucky enough to get to go backstage before and after the show!
It was so cool. I got to meet all the band members, and they were all really nice. I was a little nervous and didn't know exactly what to say, but it wasn't really a problem. They were down to earth and didn't take themselves too seriously—which I liked. It was very special to meet them!
I'm so glad that I could even make it to the show. I never thought it would happen, but it was great to just get away for a while.
I bought myself a Shadows of the Sun LP. It came in a wooden box, and I think only a thousand copies were printed, so that's pretty cool (not to mention expensive).
I thought the show was good, and the sound was incredible. They should have played longer! They also had some really affecting videos that worked as a kind of background to the show. The first one was a rebuke to author David Irving,1 and showed how awful things were for Jews during the war.
Regine and Ulver band members Kristoffer “Garm” Rygg and Tore Ylwizaker at the Lillehammer Literature Festival, June 2009
P.S. It looks like my bone marrow has started working again. My immune system has also gotten a lot better, so that's good news. I hope I can stay healthy enough so I can stay home all next week, too. I've already made plans for my birthday—so there!
A thank you to some great people
Thursday, June 4, 2009
In this entry I just want to take a second to say thank you to Beltspenner (www.Beltespenner.com) for all the work that they've done. Thomas Adams (the man behind the company) has given me so much support. He and his employees have worked hard to create clothes to benefit my support fund, and the amazing thing is that they're not taking any money for it. The profits go directly to the support fund. Isn't that amazing? It makes me think that the world isn't such a bad place after all (and it's not—thanks to people like Thomas Adams!).
As of now, they've sold about 1,500 pieces of clothing. That means we've made over 100,000 crowns. It's so exciting to see that people are buying the clothes. I never thought so many pieces would sell. Thank you so much to everyone who has supported the project!
Just think how much money there will be in the support fund. It means so much to me, and I'm sure it means a lot to other cancer patients and their families as well.
I really want to give some money to Thomas Adams and his team, but right now all I can do is thank them. I hope they know how much it means to me.
One other thing: Don't get upset if it takes a while for the clothes to arrive. You'll get them sooner or later. It's a lot of work to print all of these clothes!
Today is my birthday!
Saturday, June 6, 2009
Yes! Today's the day—I'm finally eighteen. Who would have thought I'd make it! I'm so glad I started treatment; it means there's a real chance that I'll live longer. If I hadn't started, I probably wouldn't be sitting here today. It's a thought I can hardly get my mind around. I've waited so long for my eighteenth birthday and now it's finally here (even though it's not quite like I thought it would be). Before, I used to look forward to turning eighteen so that I could buy alcohol, drive a car, vote in elections, and basically be a normal and independent adult. And I can pretty much do that now, but I can't really enjoy the benefits like a normal person can. But on the other hand, my eighteenth birthday is a symbol that I'm still alive, and that I'm going to continue fighting against this horrible disease.
Earlier (on Friday), I went out to dinner with Martin just like we'd always planned. It was really nice—and the restaurant was almost empty, which worked out well.
Later today I'm going to celebrate with my best friends. We're eating at Peppe's, going bowling, and later we're going to my house for some drinks. I'm really looking forward to it!
Oh, I almost forgot to mention that, thanks to Ann Olaug, I met Morten Krogvold yesterday. Ann's been amazing and has come through for me in so many ways. (Thank you so much, Ann!) It was great to get to meet Morten. He's a really knowledgeable and interesting man. He was also very engaged and sincere with me. I really appreciated that.
Photo of Regine taken by her friend Silje Sund for a school project on donating blood
Am posting a photo of me that Silje Sund took for her final exam project. She decided to do a project on donating blood. You're very talented, Silje! I'm sure you'll get an A!
By the way, I'm not going up to Trondheim on Sunday after all. Things look good right now, so the trip can wait a few days. I don't know exactly how long, but I'll probably go some time next week.
During the following days, 1,300 blog readers congratulated Regine. Here's a small selection:
Dear Regine: Happy birthday and congratulations with your battle. I'm following your blog and I'm really impressed. I think you'll win this fight (as a 58-year-old grandmother, I have to believe it)! Your biggest strength is the positive attitude you and your family all share. St. Olav's Hospital in Trondheim is very professional, and you're in excellent hands there (I know this firsthand, from when my daughter was sick). Keep it up, Regine, and things will work out in the end!!
—Hug from a grandmother in Hitra
My dear young lady,
Turning eighteen is a milestone for most people. It means that you can drive, buy alcohol, and vote in elections. But for you it's even more important. A lot of people were afraid that this day would never come for you. Your family, your friends, and after a while, all of Norway, shared your fear and horror—although of course they weren't able to fully put themselves in your situation. In your blog you've given us insights we would otherwise never have had, and given us a glimpse of your painful reality.
Now the day is here. You've won for now, and there are thousands of people hoping that you have many more birthdays ahead of you. Being as strong and courageous as you are, you'll continue fighting, and we'll keep on admiring you.
It might sound crazy, but my hope is that today, on your birthday, you have the chance to let yourself go and stop fighting; let other people care for you for a while. Then you can go back to your struggle tomorrow. On your birthday I want you to eat birthday cake and open presents and just enjoy yourself and your loved ones. I want you to let your cares go, and just be happy and “normal” for a while. There will obviously be many normal days still to come. And many difficult days, too, when you'll need to be strong and clever and tough. There are a lot of us who follow your story, who think of you, and hope and believe that you'll get better. But today is YOUR day. Enjoy every second of it.
As you know, I think a lot about you, and my whole family is following your progress.
And although I've said it before: A big happy birthday, especially to you, but also to your mom, dad, and little sister—and the other people closest to you.
I'm so incredibly happy for you.
—Hugs from Hestiaverden
You're the most beautiful, the prettiest, the loveliest, the strongest person I know! Again, happy birthday, my dear Regine! You make the world a better place!
—Sofsen
Regine
, I smile a little every time I visit your blog, and I also get sad and upset that cancer is allowed to exist. But Regine, because of you, and your courage, I don't despair for long. Because I know you'll win this fight, Regine! No one can measure up to the strength you've shown so far. I wish you an incredibly happy birthday today, and hope you have a truly fabulous day!
You deserve it. And much continued happiness, darling girl.
You're wonderful!
—Hug from Johanne, fifteen years old
A big happy birthday! ☺
You've inspired me! I've registered as a bone marrow donor, since I was a blood donor before.
I went to St. Olav's on Thursday to give blood, and while I was there I gave bone marrow samples, too—they'll be tested to determine my tissue type.
I hope I can help someone like you!
—Olav
Hi there!!!
A big belated happy birthday!!!! Wish you all the best!!!! I often think about you and peek at your blog…You're incredibly strong (and I think of your loved ones too). You're all so impressive…Say hello to your parents for me…Even if we didn't get to spend a lot of time together, I really valued the contact we had in Oslo…I miss SK…and I'm happy that YOU are hanging in there and getting a chance to experience more of what you want!!
—Warm hug from AM
The best birthday party ever
Monday, June 8, 2009
Regine's Book Page 13