Regine's Book (21 page)

In any case, the Cytosar worked well for me in the fall, but I received it in large doses. Hopefully it'll work well now, too.

Life is so fragile. You go around thinking you'll live forever. Unfortunately, it's not really like that. Everyone has a hard time coming to terms with death. I can't think of anyone who is comfortable with dying. But what would be best: to live forever, or to die just once? I don't think it would be so great to live forever. Obviously it's not a practical question—just a little thought experiment. Death is something we all have to face one time or another, young or old. We all have to go through the same process. I wonder if people are just as scared of death when they're old? Or do people eventually just realize they've lived their lives and that's it? No matter what, I think it's more frightening to face death when you're young. But whatever the case,
I feel like I've experienced a lot so far, and that's better than being old and not having gotten anything out of your existence. Imagine looking back on your life and thinking, What have I actually accomplished? That must be an awful feeling. I really would have liked to accomplish more, and I know I would have if I'd gotten well. I would have had a ton of new experiences, and made a real difference in the world. Well, we just have to keep our fingers crossed—even if a complete recovery seems so out of reach.

Friday, June 19, 2009

H
ey there! Many of you get a little worried when I don't post anything for a while—so just wanted to let you all know that I'm safe and sound. The chemo cycle started on Monday and ended today. I've been pretty exhausted these past few days. I've also developed a mild fever. My body aches and my stomach hurts, too. I'm pretty sure the chemo is the reason why. My blood values aren't too bad—or I should say that they're good for me, but for others they would be catastrophic. My immune system has improved, so that was a pleasant surprise at least. I'm assuming the values will start dropping again soon because of the chemo. I had to be at the hospital for five hours today. First blood tests, then medication for the nausea, and then chemo. After that I had to have two bags of blood. At the end they did an ultrasound of my heart to make sure everything was okay. I was totally worn out after all that, and had to take it easy for the rest of the day.

On Thursday, two cool girls from the paper came over. They're doing a profile of me for the weekend edition of
Dagbladet,
which comes out next Friday, June 26. The reason I agreed to do it was that it sounded like it was actually going to be a good interview. The
questions were really personal, and I felt like I was able to actually communicate a bit more than I normally can about who I am and how I think. That was the objective anyway. I'm looking forward to seeing the result. It was pretty different from the other interviews, which just focused on my blog and my disease. I think it'll turn out really well.

I've started making plans for the Quart festival. I really hope I can go! I can't say for sure if I'll be able to or not; it depends on how the treatment goes and how I'm feeling. But I hope that we can come up with a solution so that I can go. The festival manager promised me two tickets and a hotel room. How great is that!? If I can go, my best friend, Eli Ann, will come with me. I'm worried it won't work out, but I'm still looking forward to it, in spite of my doubts. Imagine seeing Slash live! Not to mention Marilyn Manson.

I'm struggling to answer all the mail that I've gotten, but rest assured that I'm doing all I can!

Wednesday, June 24, 2009

I
hope everyone had a lovely St. Hans celebration!
⁴
I know I did!

A few days ago I came down with a bad case of the stomach flu. Why can't people just wash their hands after they use the bathroom? How gross! It resulted in another trip to the hospital, but now I'm well again.

Today has been great. I had the house to myself and had a visit from the world's loveliest person, Eli Ann. We barbecued and had an amazing time together. Sausages are so underrated. We popped open some champagne (trust me—it was called for), and we toasted to the Quart festival next week, and to me wearing a wig. Yes, you
read that correctly. Actually, I hate wigs, but today I missed having hair so badly that I decided to put on one of my two wigs. I think it worked well!

The tickets and the hotel for Quart are pretty much in order and they're both being paid for by
Dagbladet
. (Thank you so much!) I hope I manage to stay healthy, and that my treatment doesn't get in the way. I'm counting on everything working out!

What do you think of the wig? Does it look real? It's made of real hair. I wonder whose hair it used to be. Have you had a good day?

Friday, June 26, 2009

I
barbecued again today—this time with Karina and Silje. We made the world's best meal, complete with marinated chicken filets, chips, béarnaise sauce, and salad. It was
so
good. We tried champagne this time, too but it didn't work out as well, so we had some sodas instead. After eating we went inside to watch
Hostage
. (Ack! It's super intense!) Then we had strawberries and ice cream for dessert. A wonderful day!

Do you think wearing a wig violates a kind of taboo? I somehow feel like it does, but I'm not sure why. I wore a wig to the hospital today and finally avoided all the stares. That felt good, so I've decided to give the wig a second chance. It actually looks pretty good. And I feel much better when I have it on.

I've been thinking a lot about people who permanently lose their hair. It's probably awful not to have hair. Can people actually get used to it? I haven't. Society today is obsessed with looks. It's really hard to find a good wig. I probably tried on twenty of them when I was looking. None of them were like my real hair, and most of the styles were ugly. Totally old lady. They should have a better selection. The word
wig
leaves a bad taste in my mouth. Why can't they just call it…I don't know…but something else.

Would you wear a wig if you lost your hair?

Which wig do you like better?

Regine's story continued to move more and more people. The members of the art rock band Ulver—who had recently conquered their collective stage fright and played live for the first time in sixteen years—were among them. On their home page, under the title “We did it. Faced the music. And you,” they wrote:

Regine Stokke, a brave girl sentenced with MDS/AML. Our burdens are nil compared to yours. We are glad you did make it to the concert and that we got to say hello to you. It is truly astounding how you manage to smile in the face of such adversity. Forgive us our pathetic coquetry with death. We don't know what else to say.
⁵

Some people who followed Regine's blog saw Ulver's comment, and others read Regine's interview in
Dagbladet
, but most of the 466 comments posted in response to Regine's June 26 entry answered the question of which wig she should wear to the Quart Festival. Here's a small selection:

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

Sunday, June 28, 2009

T
omorrow 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?

Wednesday, July 1, 2009

Y
esterday 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.