Regine's Book (18 page)

Answer:
Yes

Question:
Do you have a favorite book?

Answer:
I really like
Angels and Demons
by Dan Brown.

Lisa asks:

Question:
How did you react when you found out you had cancer?

Answer:
Badly.

Question:
When did you find out?

Answer:
I think it was August 23, 2008.

Marianne asks:

Question:
When you get totally well again, what's the first thing you'll do?

Answer:
I just want to enjoy life, and do what I want to do. Enjoy freedom.

Question:
Have you always been this compassionate?

Answer:
That's a hard question. I do know that I've changed a lot since I got sick.

Anonymous asks:

Question:
What will you do if they tell you there are no more options and that you'll die in about a month?

Answer:
There wouldn't be much that I could do.

Mali asks:

Question:
Is there/has there been a thought that is/has been difficult to tackle? How has this thought (if it exists) changed since you became sick?

Answer:
Death is hard to relate to. My thoughts about death haven't actually changed. I've always been scared of dying.

Johanna asks:

Question:
Where do you get your strength?

Answer:
That's hard to say. I've wondered about that myself. It probably has something to do with having a good support system.

Question:
Do you feel that you've benefited in any way from being sick?

Answer:
I've had a lot of new life experiences. Good ones and bad ones. So I would have to say that I've gotten something out of this. I think I've become a better person.

Question:
What are you passionate about besides donating blood and bone marrow?

Answer:
I'm very passionate about saving natural spaces. It's so sad that they're cutting down the forest behind my house. I'm also passionate about stiffer penalties for people who torture animals.

Kristina asks:

Question:
Did you have symptoms long before you went to the doctor?

Answer:
Yes, for about three months.

Question:
How do you manage to be so positive and happy?

Answer:
I found out a long time ago that I don't get anything out of being negative. It just makes everything worse. So I mostly try to be positive and happy. ☺

Question:
Are you scared of sleeping?

Answer:
No. Why should I be?

Moox asks:

Question:
A fairly interesting question: A few months ago, the doctors told you that your cancer was terminal (and if I remember correctly, the conservative politician was told the same thing). You now have a very popular blog and it now seems like they've changed their mind. They're going to try treating you. This makes me wonder if their original decision was made due to economic/administrative considerations, instead of medical ones?

Answer:
I'm not receiving treatment now because of my popular blog. It doesn't work that way. It was the Riksen hospital that decided to give up on me. Now I'm at St. Olav's for treatment; I'm their responsibility now.

Signe asks:

Question:
How long does the treatment last?

Answer:
It's hard to say. It depends on how well the treatment works and what it's supposed to accomplish.

Maja asks:

Question:
When people get into a situation like yours, and have their lives threatened by a disease, can you give us some tips? How do you think it's best for people to act toward you? What's good to hear, and what should people NOT say?

Answer:
These are really good questions. It's most important to show support and to show up—and almost all of my friends have done that. It's also nice to just be treated like a regular person. I like it when friends make me forget that I'm sick. Definitely avoid dumb questions about death. It would also be good to try and put yourself in the sick person's situation (even if you can't ever completely understand it); that might keep you from asking obvious questions. The
worst thing is when people complain to me about trivial things. Like a bad hair day, for example. You should definitely avoid doing that.

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.

Friday, May 22, 2009

T
oday 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.

Tuesday, May 26, 2009

S
o 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

1. go to the Ulver concert this Saturday; and
   
2. 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)!

Thursday, May 28, 2009

E
arlier 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.