Regine's Book (15 page)

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 of 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.

—
Regine

Tuesday, May 5, 2009

T
he doctor from Kristiansund called and said that she'd received an answer from the US. My mom, my dad, and I eventually went down to the hospital, filled with anticipation. We'd already been waiting about two weeks for an answer. The US doctor wrote that he agreed with many of the Riksen hospital's conclusions and felt that my prognosis was bad—that I didn't have a good chance—but that he was willing to treat me if I was in good condition and didn't show any specific signs of illness. The treatment would then involve some experimental chemotherapy, which could lead to remission (a state in which my bone marrow would consist of less than 5 percent cancer cells). And then after that, if the disease did go into remission, he would have to give me a new bone marrow transplant. If it was still an option for us, I could go see them so that they could assess my health and cells with their own eyes.

The answer was what we expected. It's clear at this point that I have a disease with a pretty bad prognosis—we definitely realize that.
But if the doctors are willing to try again, why shouldn't we take that chance? Because even though the chances are slim, it still might work.

Anyway, now we're struggling with our final decision. Should we continue the treatment here, or travel to the US?

We're going to Trondheim on Thursday to talk to the doctors, and thought we could discuss it then. It's important that all the experts give us their viewpoints. We'll go where the treatment is best. If we find out that it's better to continue the treatment here, we'll stay here. Everything is up in the air right now, but if the US becomes a possibility, we need to head over there pretty soon. This particular hospital is located in Texas, and it's one of the world's best for cancer treatment.

We're also waiting for an answer from a hospital in England and another one in Germany. It will be interesting to compare the responses.

Luckily I'm starting to feel better now. I haven't had a fever at all today, and that's great. I also got to participate in my sister's confirmation, which made me really happy. It was great. A very successful day. With a little help from the home nurse, I could be back home for most of the weekend.

Thursday, May 7, 2009

E
arly tomorrow I'm traveling to Trondheim, where we'll have a talk with the doctors. We'll be discussing the previously mentioned hospital in the US, along with some other things as well. The medicine I just received doesn't appear to be working, and I'm starting to get really stressed. If something is going to happen, it has to happen soon. When I get back, I'll update you on what's going on. Here are answers to some of your questions.

Ane asks:

Question:
Have you considered writing a book (when you get well) about everything that's happening now?

Answer:
Yes, I'd be very interested in (and excited about) a book project later on.

Etthjertetoindivider asks:

Question:
Have you written a will?

Answer:
No.

Question:
Are you scared of dying?

Answer:
Yes.

Question:
If yes, why are you scared of dying?

Answer:
Because I have so much more I want to accomplish here in life. I want to live more, see more, experience more. Isn't that natural?

Question:
Do you think I'll get to meet you one day?

Answer:
Never say never.

Question:
If yes, would you give me a hug?

Answer:
Since I'm totally paranoid about bacteria and stuff like that, most likely you would not get a hug. ☺

Question:
What do you think about what NN
¹⁴
said about you several blog posts ago, when he tried to make himself look like a great guy?

Answer:
I thought they were incredibly childish entries. There are more important things in my life right now than having the most read blog in Norway.

Question:
What do you think about him?

Answer:
I don't know him personally, so I probably shouldn't say too much about what I think, but he's not exactly my type, is one way to put it.

Question:
Which blogs do you read daily?

Answer:
Maren-Sofie's, Anne Marie's, and Sofie Frøysaa's.
¹⁵

Question:
Are you going back to school?

Answer:
If I get well, I would probably go back to school.

Question:
What kind of work do you want to do?

Answer:
Psychology, photography, or journalism.

Martine asks:

Question:
What do you think happens after death?

Answer:
I think everything goes black, like in a kind of eternal sleep and then that's it—you just don't exist anymore.

Question:
Are you close to your family?

Answer:
Yes.

Question:
What's your best memory from childhood?

Answer:
I have so many good memories from childhood. If I had to choose one special memory it would have to be when Malin and I created an imaginary friend. He was a polar bear who needed food every day. We visited him every day to cook food for him.

Question:
The worst?

Answer:
When I was given a hard time because of how I looked.

Question:
Who would you most like to be stranded with on a desert island?

Answer:
All of my best friends.

Question:
Which person/people mean the most for you?

Answer:
My family, my friends, and my cat.

Oda asks this question about giving blood:

Question:
Which precautions do you have to take with regards to alcohol consumption and smoking? (I don't smoke myself, but maybe others are wondering about this?) And what about kissing/sex, etc.? Are there other things you are not allowed to do? Could there be consequences if you break any of those rules?

Answer:
I don't think there are any special precautions. The most important thing is to be healthy and not to have any contagious diseases. A physical exam will be done to see if the donor meets the requirements. It's very important not to break the rules; it can have consequences for the one who gets the blood.

Marisve asks:

Question:
Which experience would you like to relive?

Answer:
I wouldn't mind reliving all the concerts and festivals I've been to with my friends, and more generally I'd love to just go back and relive all of the great times me and my friends have had together. I wouldn't mind going on all of our family vacations again either.

Silje asks:

Question:
Where do you find inspiration? Where do you get the courage for all this?

Answer:
I get inspiration from music, from nature, and from myself—from my own thoughts and feelings.

Ms. North asks:

Question:
Do you have a favorite photographer?

Answer:
I really like Peter Beste's photographs. I also like Matt Mahurin.

Anonymous asks:

Question:
I have a few different questions about your disease. When you got chemo, you lost your hair. Did it fall out gradually? Do you lose absolutely all the hair on your body? Like your eyebrows and eyelashes, and under your arms and legs?

Answer:
It took a little while before everything fell off. Yes, it fell out gradually. At first I only lost the hair on my head, but after a while I also lost my eyebrows and eyelashes. It took about four months before absolutely all of it fell out.

Question:
How are you affected by your disease on a day-to-day basis? Do you really notice it? Are you in pain or are you sick a lot? Or do you just have a kind of general sense of the disease? A general anxiety?

Answer:
Of course I notice it! Every day. I can't go to school. I can't do things that other people take for granted. I have a weak immune system, which means I have to watch out for infection, which means I can't be in places with a lot of people. I'm not in a lot of pain, but I'm really weak, and things that wouldn't even make a normal person tired make me exhausted.