Regine's Book

by Regine Stokke

  Hi there, Regine. You know what? You're just as lovely with hair as without hair, and I think you should wear whatever feels right. If you feel best with hair, then wear a wig!

  Wearing a wig is something that has to feel right for the person wearing it. Whether or not you can get used to it…I don't know: Some people probably can, and for some people it's probably a relief to wear one, while for others it's totally wrong. We're all different in that way, too. ☺

  I lost my hair after chemo, too, and I got two wigs that were totally fine, but I never managed to feel completely comfortable in them. One of them was pretty similar to my original hairstyle, but I felt like something wasn't quite right about it. I used it once in a while, but only when I was out in public. Then one day I realized that I wore it to spare people from having to see me without hair—and that's when I stopped using it.

  Both of the wigs you have on here look great on you, and it's good to be able to vary the style.

  Do what feels best to you, Regine! Hope things are okay with you these days!

  —Hug from Lise

  I just read your interview in the Friday edition of Dagbladet, and I have to say, Regine, you're totally smart (wise, even!) and have a beautiful, beautiful soul.

  After getting to know you and your story here on your blog, and hearing more about you through the papers, I've learned a lot. You've given me so much! You've actually made me want to be a nicer, more satisfied person—and to be kind to those around me.

  I don't believe in God, but once in a while I pray anyway, because it's a way to express sorrow and longing. And I've prayed for you, you beautiful girl! I'm cheering for you! Don't stop believin’!

  (I like the wig with curls the best. ☺ )

  —Anne

  No, not at all! Wigs can make a big difference for people struggling with hair loss, regardless of their gender.

  The one on the left is best, even though you look beautiful in both photos. ☺

  —Thomas

  I like the one on the right best. And you shouldn't be scared to wear a wig. Just think about Tina Turner—she's worn wigs for as long as I can remember. ☺ And that lady rocks. You do, too!

  —Kjersti

  Quart is just around the corner!

  Sunday, June 28, 2009

  Tomorrow we're traveling down to the Quart Festival. The plane leaves around 2:30 pm and I'm packing up my stuff as we speak. The festival starts on Tuesday and it's got an incredible lineup.

  The bands I'm going to see are:

  -Slash & Friends,

  -Marilyn Manson,

  -Volbeat,

  -Placebo,

  -Skambankt,

  -Familjen,

  and a few “small” bands

  It's going to be so great! I'm looking forward to this just like a little kid.

  It's going to be totally wild. A huge thank you to Dagbladet and to the festival manager for covering both the hotel and ticket costs.

  I also want to thank my parents (of course), and the doctor in Trondheim who helped make this possible for me. I have to go to the hospital in Kristiansund on Wednesday to take a blood test, but it will probably go well.

  Our hotel is ideally located, right in the middle of town, so in addition to the musical acts at the festival, we'll be able to enjoy some summertime in the city. I'm looking forward to sitting on the grass, listening to good music, and having a beer.

  Any of you going to Quart?

  Slash & Friends

  Wednesday, July 1, 2009

  Yesterday I saw Slash & Friends, and they put on one of the best shows I've ever seen. For those of you who don't know, Slash used to be the guitarist in Guns N’ Roses. He's one of the best guitarists ever.

  I can start by telling you that we actually had the chance to meet Slash at the airport on the way to Kristiansand. He was standing right there in front of us. We couldn't believe it! Then, when we got on the plane, he was sitting in the row right behind us. We mustered up the courage to ask him for an autograph, and Slash said yes, albeit a little hesitantly. We also asked him to take a picture with us when we landed, but he was too busy. At that point, though, we'd also seen Perla Hudson—Slash's wife—and Ronnie Wood,6 who were also on the plane.

  We arrived at the hotel, and unbelievably enough Slash & Friends were staying there, too. So awesome! We got to take a photo with Zig Zag, another guy who used to be with Guns N’ Roses. We'd already done so much in one day, and it was still early! We were in heaven.

  Before the concerts we went shopping and bought a bunch of cool stuff. The weather was good. We had a pre-party at the hotel and were feeling pretty good by the time the concert started. We were so lucky to have gotten photo accreditation. That meant that we could stand in front of the fence and take photos of the band. Of course we were focusing on Slash. It was an incredible show.

  There were about 20,000 people there, and in no time the whole place was going crazy. The show got really strong reviews later on, and I think they were totally justified. The band played hits like “Paradise City,” “Sweet Child o’ Mine,” “Paranoid,” “War Pigs,” “Honky Tonk Woman,” “Knockin’ On Heaven's Door,” and “Whole Lotta Love.” Some of the best songs in the history of rock! Fergie really surprised me; she was really talented!

  We took photos during the first three songs, but then we had to move further back.

  Otherwise we are thoroughly enjoying our time at the Quart Festival with VIP passes.

  Tonight there will be even more to look forward to.

  Slash performing at the 2009 Quart Festival

  I filmed this video while they played “Sweet Child o’ Mine.” Don't look at the video though—just listen to the music (and please excuse the quality): www.sinober.blogg.no/1246403628_slash__friends.html.

  Volbeat, Placebo, and Marilyn Manson

  Thursday, July 2, 2009

  Another incredible night. We saw so much cool stuff today. The best part was getting to see Marilyn Manson. What a show! That guy is totally amazing.

  Here's a few pictures from the concerts.

  For Eli Ann, Regine's best friend, the Quart concert festival was also a precious memory. Included below is her description of the time they spent together at the festival:

  Every summer for the few last years, we've gone to the Quart Festival. Not much can measure up to sitting around an evening campfire after having spent a warm day going to concerts and eating ice cream on the grass. It's become a tradition we really look forward to, and one that we carefully plan for—usually way in advance. This summer though, everything was different.

  On a beautiful midsummer's evening not too long ago, Regine and I sat on the veranda at home. We had sausages on the grill and had popped some champagne. The Quart Festival was just a few days away, but up to that point we'd barely made any plans at all. It was like we were afraid to look forward to it, because we were so scared that the trip wouldn't happen. Maybe Regine would get too sick to go, and maybe the treatment would get in the way. There was a lot that could have broken up our plans—however much we looked forward to them.

  Marilyn Manson performing at the 2009 Quart Festival

  Regine's photos from the Quart Festival

  But a few days later, dressed for summer and bubbling over with excitement, we arrived at Gardermoen airport to catch the plane to Kristiansand. And then, to our great amazement, we saw Slash heading toward our plane. We looked back and forth from him to one other and back again. Was this really happening!? When we finally got on the plane, we were like two fourteen year olds: We were giggling (nervously) and we couldn't stop. We could hardly believe it. So even before getting to Kristiansand, the trip was already a success. For an hour we were sitting within an arm's length of one of our favorite artists. From time to time, we looked eagerly between the seat backs, just to make sure he was still there. We talked about all the stuff we were going to do over the next few days. We had no idea how fantastic it would turn out to be.

  Late
r on, we took a seat on the bridge in the middle of town and had an ice cream. The sky was clear, the sun was shining, and we were just people watching. A boy holding an ice cream cone was balancing on the edge of the bridge—a tiny bit of wind would have sent him right into the water (and we wondered just how much wind it would take). There was also a middle-aged man who took off his shirt before lying down on the bridge to work on his tan—silver grey chest hairs and all. We just smiled. There are crazy people everywhere, doing crazy things, and there are a lot of milder eccentric types, too. Regine snapped a photo of a swan bobbing on the water near the docked boats. Swans actually mate for life, and when one of them dies (so they say) the other one dies of sorrow. The swan was resting so peacefully and gracefully in the choppy waters. We were fascinated, and talked about how animals are more intelligent than people in some ways, with their well-developed instincts and senses. There's a lot we can learn from animals.

  Because Regine only has a small supply of strength right now, we took a lot of small breaks between shopping, concert-going, and restaurants, just so that she doesn't get too tired. We also visited the hospital a few times to take blood tests. Regine decided that she doesn't want to know too much about the results. If there's bad news, we don't want it to ruin this well-deserved vacation.

  A lot of people have recognized Regine, and she appreciates it when people come up to wish her well and tell her how much they like her blog. But she also just wants to blend in with everyone, and she wears the wig to help her gain a little anonymity for a while. At the hotel, Regine cuts and arranges the wig like she wants it, and with newly styled hair, she goes out into the world without getting stopped by the press or stared at. The press has been following her since we arrived, and we can't help but laugh at their quizzical faces whenever they think they might have recognized her, but aren't sure.

  Regine got a VIP-pass, and I'm lucky enough to get to share it with her! So now we get to take photos of some of our favorite bands right from the edge of the stage without being crowded out by tons of people. For the Slash & Friends show, we were able to find a good position up in front, but then we just had to wait (anxiously) for them to take the stage.

  We were standing with journalists and other press people, and it was pretty easy to pick out the real fans among them. The cameras were poised, and we knew that eventually we'd get to see one of our favorite acts up close. It was just hard to wait. Finally, though, Slash & Friends got on stage. The festival exploded in light, and cheers from the audience behind us blended in with the music and covered us like a blanket of sound. We took photos like we were pros. Between photographing, we looked over at each other and shared wide-eyed, ecstatic smiles. We shouted to each other, but our words kept getting drowned out by the guitar distortions and the bass vibrations. Words can't capture what it was like, but Regine's expression said it all. Her eyes were beaming with happiness, and at one point she just mouthed the words “This is crazy!” And that's exactly what it was. Slash moved to the edge of the stage and put one of his feet on the monitor and, in authentic hard rocker style, went off on an insane solo. We could just barely see his eyes behind his dark sunglasses. Regine pulled my head toward her and yelled, “He probably recognizes us!” We burst out laughing and decided that he really was looking at us (regardless of whether or not that was actually true). After listening to a few more songs, we decided to sit on the grass, have a beer, and just enjoy the music in the summer evening. One hit after another filled the Bendikbukta stadium. There were two guys right next to us who'd had way too much to drink and were rolling around half-naked on the grass. We just laughed and shook our heads. They probably weren't even able to remember the next day which bands they saw. Oh well—too bad for them!

  Regine and Eli Ann sitting on hotel steps in between concerts

  The festival could not have gone any better so far. Being able to just enjoy the music feels so incredibly liberating after everything that we've gone through.

  For the first time in forever, Regine's felt like a normal teenager. We had lunch under a parasol earlier, and we both agreed that summer in Southern Norway really is idyllic. (Whenever we order food here, we always end up getting club sandwiches.) In the afternoon, we went for a walk around the shopping area and wound up loaded down with shopping bags. Our legs got achy after wearing sandals for so long. We're tired and happy—which means laughing cramps are never far away. And before the concerts, we've been getting wine and cocktails at the hotel. The music is always on full blast, but we do our best to drown it out with singing.

  We've spent a lot of time at our window, where we have a full view of the hotel bar and outdoor restaurant. Most of the groups playing at Quart are staying at our hotel, and our cameras and room keys are ready to go in case we see someone we know. When we do spot someone, we run right over to the elevator (which always seems to take its sweet time—we end up standing there and hopping around impatiently until it comes, and when the doors open again to let us out, we waste no time in racing out to the terrace). When we first checked in at the hotel, Ron Wood was already sitting at the bar. (We weren't exactly surprised.) Then, at the end of every day, we lie in bed talking about everything we've seen and done. We share thoughts and theories about all kinds of things, and the atmosphere is unforgettable, even if thoughts about the disease are never far away.

  We're both surprised—and very happy—that Regine's been able to take this trip, as per our tradition. This time though, we've got a hotel instead of a tent, and room service instead of a barbecue, and we agree that this really is “an event of a lifetime” kind of thing. These are precious memories that will always be part of us.

  Vidaza today

  Monday, July 6, 2009

  Arrived home from Quart on Friday. As I said, it was totally incredible! So great that I got to go! I was in pretty good shape too. I managed to do most of the things I wanted. Went to concerts, went shopping, ate outdoors, etc. I don't think I've been this active since last summer. It's incredible to think about. Quart definitely turned out to be the event of the year, or maybe even the event of a lifetime if you ask Eli and me.

  Meanwhile, the recent blood tests are showing signs of a turn for the worse. My immune system is getting worse and my white blood cell count is rising. Not good, but that's how the disease is. And we know from before that my bone marrow is full of cancer cells, too. The doctors in Trondheim thought it would make the most sense to start me on Vidaza today. It could work, and if it does, it would be the simplest solution. If it doesn't work, they have to start trying some other methods. Very risky methods. But for now we just have to wait and see. Experts from other countries also think this is the right course. One thing that's good is that the blood platelets have gotten started. You have to consider everything that's positive. But of course when something goes well, something else inevitably goes wrong. I guess you can't ever get everything you want. In general, I'm not doing anywhere near as well as I was at Quart. I bet it's because I was so active there. I think it really had an effect. My blood percent is low, too. At this very moment I'm at the hospital getting blood.

  That aside, I think it was very cool of Norway, Inc., to give me tickets for the upcoming Metallica concert in Oslo. They wanted to pay for my tickets, travel, hotel, and meals. Isn't that incredible? Eli and I are planning to go. It's always possible that the treatment will get in the way, or that my condition will worsen, but I'm hoping that it will all work out.

  I was pretty surprised that people recognized me at Quart—even when I was wearing a wig! It was actually kind of nice to hide behind a wig. No one stared or anything. I felt like a normal teenager again, and I got to escape from reality a bit. It was so amazing to get to take photos of the stars, too. Not many people get that opportunity. I'm so glad you liked the photos I took. I only put up a few of them; there's a limit to how many concert photos I can post, before I start hitting the B-roll. A lot of people asked what kind of camera I use. It's a Nikon D70. I didn't do muc
h editing on the photos from Quart, but the editing program I use is Adobe Photoshop.

  By the way, I forgot to mention that there are two auctions going on right now at the online auction site QXL. The Kristiansund camera club is sponsoring them. The proceeds will go to my support fund. Thank you so much!

  On July 9, 2009, Regine posted her diary entry from April 27 on her blog:

  Diary: Monday, April 27, 2009

  I hate it when people tell me they're dissatisfied. Dissatisfied with what, I wonder. You shouldn't complain about your life to someone who's hanging on by a thread. I don't appreciate others taking life for granted when I would love to have even a small portion of what they have ahead of them. I don't want to talk to those people; I block them out because they sap all my energy.

  Why don't they say something nice instead, and tell me that I'll get well. I like to hear that, even though sometimes I react negatively to those kinds of comments, too. (“How do you know?” I think.)

  I'm struggling with how I should feel and what I should believe. I'm kind of ambivalent. Will I live or die? Am I on a voyage toward the darkness of death? Or am I heading toward light and life? Nothing is determined yet.

  I'm indifferent. I don't want to live or die. I think it's better this way. I shut out feelings of despair, sorrow, and terror. I don't get anything out of them. I hold things at a distance. But deep inside I know they're there.

  I keep myself busy because I'm stressed. I have to do something all the time just to avoid those impossibly intense emotional reactions. I'm not detached; I'm just tired of all of this. Tired of fighting for something that should be a given: life.