Regine's Book (3 page)

I've finally improved enough so that I feel okay about the upcoming treatment. I can walk normally and go for longer distances without collapsing—but now they're going to break me again, apparently. That's just how it is.

Since I'll probably be infertile after all of this, I've been asked if I want to freeze one of my ovaries.
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I honestly don't know what to do. I'm not sure what I want to do in the future, but it's good to have options. And I think it's better to regret something you
have
done rather than something you haven't. Freezing eggs is still in the research stages, and so far no one has tried getting pregnant using this method. It would require in vitro fertilization, and they can't guarantee there won't be leukemia cells in the eggs, so it's possible that you would get the cancer back this way. But in ten to fifteen years, they'll definitely know more about all of this. In any case, it won't be possible before then no matter what, if it becomes possible at all. So what should I do?

Call me vain, but sometimes I sit in my bed and think about how I used to look. I miss the way I looked—especially my hair. I'm so worried it won't grow back, even though I know that only rarely happens. I want it just like it was before. Don't know if I could handle a drastic change. Of course it's pretty stupid to think like this, because first I need to get through the transplant itself. I want my whole self back.

Monday, November 10, 2008

11:30 am

I
'm sitting in my room in Trondheim right now. I haven't started the treatment yet, but I feel nauseous already. It makes me wonder if on this cycle I'll be really sick and have to throw up a lot. I hope not. At 9:00 pm the hell begins. I'm scared to death.

I just heard that some people rented out a movie theater for me this coming Thursday. That is so nice, but I honestly don't know if I'll be in any shape to go. I'll try at least.

So far today I've gone in for a bone marrow biopsy and for a chemo injection in my spinal fluid (but don't bother asking me why).
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Well, at least it was done under anesthesia. I woke up with an intense headache that still hasn't gone away. I feel really horrible today. But right now I'm just waiting to speak with the doctors.

8:30 pm

It's half an hour before I start the chemo. It will go better this time. I'm much healthier now than I was before. Last time they gave me chemo while I had a fever, a spleen infarction,
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and fluid in my lungs. I don't have any of that now. I have every reason to believe it will go better.

My mom, my dad, and I all had a lot of questions for the doctor. We found out that I have an aggressive type of AML due to my chromosome changes. I'm missing a chromosome 7, and one of my 3 chromosomes is also defective. Because this is aggressive stuff, they don't want to let anything go for too long, and they have to give me a powerful cycle to keep the disease at bay, so that I'm ready for the transplant and the chemo that comes with it. I have to trust that the doctors are doing the right thing. If the disease suddenly takes off, and too many cancer cells develop in my bone marrow, the disease would be very difficult to knock out. The doctor in Oslo is the best in the country, so I have no doubt that if anyone can get me healthy again, he can.

His plan is for me to have the transplant over the New Year. He wouldn't have done that if he didn't believe it was the right thing, because it's a serious procedure.

I was terrified when the doctor said that this was an aggressive type of cancer, but I have to believe that they're still the ones who are in control. So we now have a plan A, but we have a fallback plan too.

Tomorrow the whole Rosenborg soccer team
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is visiting the unit. Rosenborg is my favorite team, so this is great news! I just hope I won't be too sick by the time they arrive. I don't think I will. And even though it's going to be embarrassing to meet them like this, it will be pretty cool too. We're going to eat pizza with them, and we've been told to bring our cameras and autograph books. So I guess every cloud has a silver lining—at least sometimes, anyway.

Wednesday, November 12, 2008

T
his cycle of chemo has been pretty rough. I was right to be worried about nausea and vomiting this time around, but luckily there have at least been some periods where I haven't felt that bad. I found out that tomorrow could be the last day of treatment. It usually lasts for six days, so hopefully they know what they're doing. Anyway, after feeling so bad for so long, I'm at a better stage now. I've eaten more, and even been able to socialize a bit. I visited a boy named Patrick in his room. He's super nice.

I found out today that someone from the unit completed his transplant. He came back yesterday, I think. I'm so glad that everything worked out for him! His disease is pretty similar to mine, but there are a few key differences. He's in pretty good shape and was there only five weeks. It gives me a bit of hope, even though every patient is different.

Today I talked to the hospital pastor (which was kind of a surprise, at least for me). I felt like talking with someone, and even though the previous psychologist was a bust, I thought it was worth trying someone else. The nurses told me that he was really easy to talk to, and that he didn't force anything religious on you while he was here. He didn't say a word about Christianity. And of course that's not why I wanted to talk to him. I had just heard rumors that he was good at having actual conversations with young people. We had a deep and really thoughtful discussion. He brought out some thoughts in me that I didn't even know I had. I managed to put words to my fears about death and about everything that's about to happen. We talked about what death is, and how we imagine it, and that it's scary because we don't know what it means to not exist. And before he left, he told me that I was very unusual. He said it several times. He said I was good at putting feelings into words. That felt good to hear. I was deep in thought after that talk.

And so in other news, yesterday I actually talked to someone from Rosenborg! I wasn't in any shape to go downstairs, so I didn't think I would get to meet them (and I was disappointed because I'd been looking forward to it so much). But then a nurse came in and said that they could come to my room! That was so, so awesome. I actually felt better right before they walked in. The ones who visited were Per Ciljan Skjelbred, Roar Strand, Steffen Iversen, and Marek Sapara—so pretty much everyone I wanted to meet. I was scared that it would be awkward, but it wasn't. They were down to earth and easy to talk to. They asked me how I was, and I talked a bit about what I had been going through and what I still had coming up. I also gave them a hard time about Kristiansund BK beating them in the playoffs. Apparently they'd forgotten about that.☺

Regine in her room at Trondheim Hospital on November 12, 2008 with Rosenborg soccer team players (from left) Roar Strand, Per Ciljan Skjelbred, Steffen Iversen, and Marek Sapara

Thursday, November 13, 2008

I
t's strange, but the last few days might have been some of the best I've ever had. I've learned to appreciate the small things in life. I've felt joy, in spite of my situation. I asked Knut, the pastor I spoke with yesterday, why I sometimes feel happy when I don't really have any reason to. But do you always have to have a reason?

You get a new outlook on life in a situation like this. I wish there was another way to get this kind of a wake-up call. Maybe there is, but I just don't know about it.

I wish everyone could learn to appreciate life, even when it seems cruel. We have to stop demanding so much from life. You can't get everything you want. What if you end up with a mediocre existence? I definitely didn't want that before, but now it wouldn't bother me so much. After this, if my life becomes normal again, I think I'll appreciate it more, and be better. I won't complain anymore. (Of course, everyone complains sometimes—that's totally normal—but I won't complain like I did before.) I'm going to appreciate every day I'm here. Life is suddenly very important to me.

It's a bit of an art to teach yourself to appreciate the little things in life. At least, that's how it was for me before the illness. I took everything for granted. Now I've finally learned that lesson. I got to go to the movies today, and even that was huge for me. I actually started crying today when I was thinking about the last few days, but they were tears of happiness. I mean, I met some players from the Rosenborg team, I had the best conversation of my life with a very special man, and I went to the movies. I haven't felt this happy for a long time. Today I even found out that I might get to go home tomorrow. I wasn't expecting that. It depends on the blood tests tomorrow. It doesn't matter how long I get to stay there; each and every day I get there is priceless.

I finished the chemo today—finally. It's actually gone surprisingly well, and today I wasn't sick at all. But I'm curious about what will happen when my immune system is depleted.
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That's when the problems start. I'm scared. The fear of death is always at the back of my mind, and even though those thoughts have been hard to fight today, this has still been a good day.

The same day, Regine's grandfather (on her mom's side) wrote this letter to his grandchild. In the text, he posted a framed wedding picture of her mother and father that Regine took right before she got sick.

To Regine:

Do you remember August 4, Regine?

When you took that picture of your parents, everything was perfect.

None of us knew what was about to happen. You were going on vacation and were looking forward to wonderful days in the south.

Resting at home, before the new semester at school, you got sick, and on August 22 everything suddenly went black.

The world fell apart and time stood still.

What happened?

Is it possible?

Yes, it is.

Like lightning from a clear sky, the disease struck. And since then we've lived in hell. You, Elise, your mom and dad, your grandparents,
and all of your dearest ones. Your entire family is affected by your misfortune.

But there's a light at the end of the tunnel. That's where we're going: out into freedom. All the trials you've been through are now bearing fruit, and we're looking forward to life returning to what it was like when that picture was taken.

In difficult hours: Look at how happy your mom and dad were.

Life will be like that again, because love and happiness can move mountains.

In the future, what you've been through will just be a bad memory.

This picture is a reminder of how precious life is.

Take good care of it!

Monday, November 17, 2008

S
o I actually got to take a trip home—who would have thought that would happen? Didn't know that you were allowed to take a trip home after such intense chemo. In any case, tomorrow the holiday is over. Then I'll have to get up early and get to the hospital at a reasonable hour. My immune system is almost gone now. Apparently that's when it starts to get really bad. Of course it won't necessarily be terrible, but it will definitely be challenging—that much I know. It's pretty rare for someone to go through a treatment like this and not get some kind of an infection when the immune system is gone. The uncertainty is the worst. You can be worried for no reason, or you can be unprepared if it gets really bad. I wasn't at all prepared for the last round. Didn't think it could get so bad. Of course I had to be the one to get this rare disease. I won't ever think, “It will never happen to me” again. I've realized that anything is possible; anything can happen to anyone.

I had hoped for visits from girlfriends when I was at home, but no one came. Everyone who could have come had a cold. And unfortunately, I can't be around anyone who's sick right now. It's a strict rule. If I catch a cold from someone, I can get really sick, and I'm extra susceptible to contagion. You have to avoid what you can avoid. I miss everyone here at home when I'm away. It's sad that I can't meet some of them while I'm actually at home. Fortunately I have lots of good friends who drop by Trondheim once in a while.

It's hard to hear about friends who are going to parties and having fun. I just get so jealous. I can't help it. I also want to party, dress up, and have fun. I miss that so much. Just to do my hair. Why did I complain about my hair before? My hair was nice. Now it's gone.

I don't mean that my friends shouldn't tell me about the parties they go to—after all, it's fun to hear about them. And we can't just talk about me. That would be too depressing. But I would do anything to be in their situation. I just want to say to everyone that's reading this, that you have to enjoy life—you have to live.

My mood swings annoy me: positive, negative, positive, negative. Why can't I just hit a switch that makes me positive all the time? I hate wasting energy on sadness. But that's probably impossible. In any case, I've made huge progress in that area. In the beginning I was almost always pessimistic. Whenever we talked about the disease, I could only say that I was going to die, that I wouldn't manage to get through this. But I've worked on myself a lot, to try to be more productive with my thoughts. The fear of dying is always there, but I've taught myself to push that fear to the back of my mind—so I manage to have better days with better moods. Sometimes.