Regine's Book

by Regine Stokke

  As I mentioned earlier, they're taking a collection for me. My hope is that they raise a ton of money for myelodysplastic syndrome research and for improving conditions for child and adult cancer patients. You can read more about this on the Facebook page “In support of Regine Stokke.” A web page will be set up eventually, and I'll get back to you with more information about that later.

  By the way, I'm on the top of the list at www.blogg.no.6 Incredibly cool, even if it doesn't really matter much.

  In my next entry I was thinking of posting some of my paintings—especially the ones from my session yesterday at Else's house—at the Undertow gallery.

  Video blog

  Saturday, April 18, 2009

  Oistein Monsen (Dagbladet) filmed me while I was taking a walk. So before the post about my paintings, here's a quick video blog:

  http://sinober.blogg.no/1240068800_videoblogg.html

  Edit: By the way, I was on TVNorge news at 6:00 pm. in case anyone saw it. I have no idea if they'll rerun it or not. Do they repeat the same news show all evening? Anyway, it focused on the same stuff as this video blog, but covered some other things as well.

  Exhibit, book project, etc.

  Monday, April 20, 2009

  I'm so fortunate to have my own photo exhibit at Nordic Light7 next week. The annual event is held here in Kristiansund, and my exhibit will be in the Old Expert Hall on Kongens Plass. I'm really looking forward to it.

  My exhibit will be called “Face Your Fear.” I hope it will add something really special to the exhibit. It's happening next Wednesday.

  This is really a dream come true for me. Thank you so much, Ann Olaug!8

  Also, a man contacted me about doing a book project. It seems like it would be made up of mainly photos and poems. Incredibly exciting!

  My other exhibit will be on June 27 in Sunndal. I hope I'll be able to participate in that one, too. If not, someone needs to organize and set up everything for me. Whatever happens, though, this is another dream come true.

  I'm so thankful for the people who helped to make this happen. It means so much, and feels really fulfilling.

  Here are two pictures that will be the centerpiece of my exhibit at Nordic Light:

  The blood test results were bad today. But we expected that. After all, I had a relapse. But I hope things will turn around soon. My body's under attack, and the disease won't just disappear. I'm waiting to be rescued.

  Paintings

  Tuesday, April 21, 2009

  Clearly I'm not an artistic genius, but I still have a great time when I'm painting. And isn't that what matters? I'm glad you're interested in seeing them. Here they are9!

  Clothing sale—update

  Tuesday, April 21, 2009

  Update: New product descriptions have come out, and now you can see the reverse side of the sweaters, which will have some writing on them. The writing on the sweatpants will appear on the back of the legs. See www.beltespenner.com for more information.

  Line Victoria10 had the idea that we could sell T-shirts to make some money for my support fund. Beltspenner wanted to participate as soon as they heard about it, and they've already started making some sales. The image is from a photo of my eyes that I edited and submitted. Anne Marthe wrote the slogan on the back (which is pulled directly from my blog): “Face your fear. Accept your war. It is what it is.” I think the T-shirts are pretty awesome, and so are the other clothes, too. You can get the T-shirt in both men's and women's styles. They also offer pants, hoodies, and tank tops—and all the proceeds will go to my support fund. A BIG thank you to Beltspenner and special thanks as well to Thomas Adams, who's responsible for of all this! Totally incredible. You can read more about the campaign here: www.beltespenner.com/oscommerce/bannersider/regine.php.

  Two of Regine's photos, entitled “Drowning” and “Dead Girl Walking” respectively.

  All the clothes are available in sizes small to extra-large, and are available in several colors.

  Treasure every day

  Wednesday, April 22, 2009

  I have to admit that all the media attention surrounding me has been stressful, and it's been difficult to decide which offers I should say yes to. Some places have also written about me without my permission, which isn't very cool (even if they were good articles). Thankfully it's starting to quiet down now. I'm in no way starved for attention, but I am very involved in spreading my message. I'm hoping that after a good day today, I can spend a nice evening with my girlfriends and just relax. I never know when I'll have to go to the hospital again, so it's important to treasure every day.

  It's a good thing I'm not sick, because my immune system is really bad right now. I'm getting pretty worried about that. Your white blood cell count shouldn't ever go into a free fall.

  I think they need to do something. And I just hope there's something that can still be done.

  A lot of you are probably wondering if I ever got an answer from the hospital overseas. I haven't. So I have no idea what they think about my situation—and whether or not they think there's any hope.

  I was lucky enough to get in touch with a Swedish woman whose son had exactly the same diagnosis as me. The Swedish doctors gave up on him when he had a relapse after his bone marrow transplant. A few different measures were taken to cure him, including a new transplant, and he's still alive today. Stories like this are really important for me to hear, and I'm glad this woman reached out to me. I hope that I can imitate that boy's success.

  On another note, there's something I need to correct. The photo exhibit I talked about that was supposed to be in Sunndal is actually in the Ora prayer house (it's not a religious organization). It's being organized by Jon Riiser, and it's on June 27 at noon. I also hope that some of you will come to Nordic Light next Wednesday.

  By the way, the clothing sale is going really well. Remember that you're supporting a good cause! This is great.

  I'm actually kind of worried that people will get sick of me after seeing so much of me in the media. But the thing is, it wasn't me who went to them; they were the ones who came to me, and I hope you understand why I agreed to talk with some of them. I'm really involved in the cancer cause, and I want to make sure I do what's best for myself and for others in the same situation. I hope you have a great day, and a big thank you to everyone who's getting involved! I really appreciate it, and you need to know that.

  New treatment started today

  Thursday, April 23, 2009

  St. Olav's and Riksen have a collaborative treatment project that's starting up today. The treatment is relatively new, and no one knows how well it's going to work. It might be able to reverse the disease, but it's definitely not a miracle cure. The goal is to get to a place where I can get a new transplant, so this treatment is intended to just buy us some more time. It will take seven days, and it's happening here in Trondheim. I'm really eager to hear more about how it's supposed to work. No matter what, it will be of some benefit. If it doesn't turn back my disease, it will at least extend my life. Anyway, we're all really excited to see how it turns out. I guess you could say it's like an alternate version of chemo. Everyone's really pleased that the doctors have made it available, especially since I've got nothing to lose right now. The treatment can probably just be continued in Kristiansund on Monday. The best thing about all of this, by far, is being able to stay at home.

  As I said, I'm now at St. Olav's for treatment. It's not very likely that I'll get sick, but I need to be here just in case something out of the ordinary happens. That's the risk with all treatments. You never know, and no one has any guarantees. Just after we got started with the treatment, Bengt Eidem came by to visit with his girlfriend, Kristin. It was so sweet. They're truly good people. We had a lot to talk about and we have a lot in common. He got some good results on his most recent set of tests today (hooray!), and he also brought a nice gift for me. A cute little teddy bear. I hope we can meet again. He said he hoped so, too.

  One step at a t
ime

  Saturday, April 25, 2009

  I think the treatment's going well—no complications yet. And that's great! The goal with the medicine is to help the bone marrow generate more healthy blood cells and at the same time kill the immature cells. It will be interesting to see how it goes. In any case, the medication tends to work for most people. I'm very curious. Those who are interested can go here to read more about the drug: www.vidaza.com.

  I had another set of visits from Bengt and from Dagbladet today. The interview will most likely be printed tomorrow. It was a really pleasant conversation at least. It's an important issue, and I'm excited about seeing an article about Bengt and me. I received a gift from the journalist and photographer. They bought the TV series Entourage for me. I need a few things to watch now that I'm at the hospital. My father and I are going to see Dead Snow11 on the big screen today. (A little black humor never hurt anyone.)

  I want to take a quick second to thank the RaumaRock festival for their amazing gift. They sent me festival passes, T-shirts, photos, a letter, and a lot of other stuff, too. How sweet! I'm really looking forward to the festival. One way or another, I'll get there! That's my goal, and it's important to set goals for yourself. I get depressed if I just sit around and dwell on how sick I am and how hard things are for me. Plans are important, but they need to be realistic, too. I think that in general I manage to keep things pretty reasonable.

  Quick update

  Sunday, April 26, 2009

  Update: Someone asked if I could do a question-and-answer post. Maybe that's not such a bad idea? As far as I'm concerned, you can just ask away, and I'll try to answer as best I can.

  Safe at home

  Sunday, April 26, 2009

  I finally made it home, and I feel great. It's just as easy to continue the treatment here as at the Kristiansund hospital. It only takes ten minutes a day. Still, it was amazing to meet with the St. Olav doctors and nurses again. They're incredible, and we had a lot to talk about. Not only are they nice, but they're also super-talented! Just wanted to say…

  You can access today's interview in Dagbladet, along with a video, here: www.dagbladet.no/2009/04/26/nyheter/innenriks/helse/kreftbehandling/5925057/.

  Continue sending in your questions. Ask all you want!

  On the same day, Regine writes the following in her diary (not included on her blog):

  I love love and affection. I live for affection and love. But right now, at this moment, I don't want any new people to start liking me. A lot of people like me when they get to know me. And now I have to pull back. I don't want to hurt anyone when I go away. And that's what's in danger of happening, I think.

  Admitted

  Friday, May 1, 2009

  Unfortunately, I've been admitted back into the Kristiansund hospital. I've got a high fever and extreme muscle pains. No one knows what's going on yet, but they took a lot of tests. Have started taking antibiotics, which we hope will take care of the problem. (It's also possible that these are side effects of the medication.)

  Started getting sick a few days ago. I had a visit from Sofsen12, and it was super nice. She's an awesome girl. I wish I had been in better shape when she was here. Will have to try again later!

  I also got to take part in the photo exhibit opening. (Luckily.) I wasn't in very good shape at the time, but in a way I really had to go. And I'm really glad I did.

  So I was admitted on Wednesday, and so far things are not getting any better. I'm really worried. No one knows what it is yet. I just want to go home; it's better to be sick at home than to just lie here, sick and waiting. They can't do anything anyway. My sister's confirmation is this weekend, and I'd like to be at home for that at least. I'm so scared that this thing—whatever it is—won't go away, and that they won't find out what it is. I'm on antibiotics, but it doesn't seem to be doing much. Had a fever of more than 104 yesterday, and it looks like it's heading in the same direction again now.

  I was totally dazed at the exhibit because I was starting to get sick. It's too bad it turned out that way.

  I wasn't too impressed with the fact that Dagbladet said that I was “sentenced to death” (www.dagbladet.no/2009/04/29/nyheter/innenriks/regine/kreft/kreftbehandling/5985217/). I'm sick of people only talking about how I'm going to die. No one knows that yet, especially since I recently started a new treatment. Things look bad, I admit, but I get really upset when people write inappropriate comments on my blog. Someone actually sent me a message saying he wanted to come to my funeral. Don't people have hearts?

  Regine's entry led to 414 comments, for the most part supportive. Many had also read Dagbladet's headline “Cancer patient Regine is praised by Morten Krogvold”13 with the subtitle “Photo legend describes seventeen-year-old's photographs as totally amazing.” Here's a small selection, followed by a response from Regine:

  Hi Regine,

  It made me sad to read this post. Hope that things get better soon.

  Remember that people are people (for better and for worse), and everyone reacts and even thinks a little differently. Your openness has provoked thoughts and feelings in people that they may not have even known that they had. Some people are really impulsive and others are more thorough and some are maybe not quite “well.” The comments will probably be like that, too. Rise above these comments and use your energy on something that matters (like taking care of yourself and your family). I wish you all the best.

  —With kind regards, Tore

  Get well, Regine! You'll clear this hurdle soon—I know it! In the meantime, there's a real downside to being the focus of so much attention: You'll get a lot of dumb comments from people who don't know any better or who have real psychological problems. So don't pay any attention to them. You've accomplished so much already, and displayed real wisdom and an ability to think through some profound questions about human existence. I'm also undergoing cancer treatment and have learned so much from you already, even though I'm now an old woman of sixty-seven.

  —Warm thoughts from Unni

  I had a functionally impaired daughter who was also given a “death sentence” by her doctors; they felt she would live a year at most. So every day while I was walking around, I was also consumed with the idea of her death! But we need to focus on life, not death. New drugs and treatments are being developed all the time, and you have to be open to the possibilities they may offer. I'm sending tons of positive thoughts your way, and I know that thousands of others are doing the same.

  I hope the fever goes away and that you have a good day.

  —Grete

  What great feedback from Morten Krogvold! That must have been so wonderful to hear—and it's fully deserved as well. Have only seen your photos that are posted online, but they are truly powerful and very well done.

  Some people don't think very carefully about what they say. Rise above these comments, and focus on the positive feedback instead! You'll get well, Regine! That's the way it is. ☺

  —Ingeborg

  A SMALL REQUEST TO EVERYONE HERE: Regine is not just “the girl with cancer.” Regine is Regine, and she happens to also have cancer. There's a big difference. She's a totally cool and fun girl—with values and opinions that are distinctly her own. She has so much to offer! She's tough (with real backbone), and isn't a “poor, little, sweet” girl. Yes, we can PITY her situation. But she doesn't need to hear “POOR YOU” all day, every day, because she KNOWS that she pulled a short straw here. Rehashing it over and over again is just rubbing it in. And yes, she is sweet—but she's also tough. And to those who keep posting things like “Awww…dig your blog!”…What is there to dig!? The way she writes, I hope. Because she's talented. But Regine is blogging to share a message. She's not writing so that people will pat her on the head and say “Pooor little thing” and then go out and get drunk and complain the next day because they have hangovers.

  And for those who focus on death the whole time. What a twisted fucking (excuse my French) focus!??? Christ, focus on some o
f the good things instead.

  Thank you!!

  —Sofsen

  Just wanted to tell you that you're doing a world of good for others through your blog and your fight with cancer.

  Last time I went to the blood bank, the nurse told me there had been a big surge of sixteen- to seventeen-year-olds who had read about you, and who wanted to give blood. They'll definitely return to give blood when they're eighteen. And then there are probably many, many of those old enough who have given blood because they heard about you from somewhere else.

  You're making the world a better place, Regine! I think of you often and hope everything works out in the end! Enjoy the confirmation!

  —Stina

  When will you die?

  —J

  Thank you so much for all the nice comments!

  J: Are you a total shithead, or what? “When will you die?” Maybe you'll die tomorrow in a car accident—you never really know. No one knows exactly when they'll die. Do you ask just so you can rub in how bad things look for me? I feel like the negative comments are getting more and more frequent, and I honestly can't understand why.

  I really appreciate all the positive ones (and luckily they're the majority)—they mean a lot! But at the same time, I can't help getting upset by the negative ones, and maybe that's why people post them. Some people just don't respect others, and don't know what's important in life. If only they knew what it's like to live with this fear. They probably wouldn't be so high and mighty then. Unfortunately though, life is unfair and diseases affect the most innocent—and I'm not just thinking of myself. There are so many people here in Norway and around the world who have been struck down by things like this. All the other cancer patients I know truly deserve to live.