Regine's Book (12 page)

I will definitely keep up with your life and health via your blog, and I'll keep my fingers crossed (and my toes) for us both. In the meantime, happy Easter!

—
Hugs, Bengt

Tuesday, April 7, 2009

I
just wanted to take a minute to say how truly grateful I am for all of the support that you, my readers, give to me each and every day. Every word means so much to me, and helps to keep my spirits up. I was in a pretty dark place over the holidays, and maybe I still am, but your kind words help me to keep hoping. I love you all so much—even those of you that I don't even know.

I've also gotten some beautiful gifts from some of you. Ida and Maiken sent Easter eggs and a nice card. The card was unbelievably well done. Everything inside the egg was delicious, and the drawings of me at Quart
¹
put a big smile on my face. Martin's mother knit socks for me and wrote me a really nice card. It made me so happy, and (incredibly) the socks fit perfectly. She even knit my name on them, which made them extra special. Thank you so much!

Truth be told, though, the cards and gifts are nothing new. Throughout this whole process, people have been incredibly sympathetic, and I've received a ton of presents from family, friends, and even my mom's colleagues. I've gotten so many bouquets, cards, money, and wine—and again, I'm so thankful for everything. Martin has also given me lots of gifts: roses, CDs, movies, and really nice cards. Every time he gives me something, I can't help but cry; it makes me so unbelievably happy. But of course you don't have to give me a gift to show that you care. Kind and supportive words are more than enough.

Without you I could never have gotten this far!

If you have a second, you should definitely take a quick look at the film Martin made (and which he dedicated to me). Martin is unbelievably talented, and this film is totally special. I would love for you to see it, and I guarantee that you'll get something out of it. Please leave a comment for him, too—it would make him so happy!

You can see the video (which is a little over three minutes long) here:
www.youtube.com/watch?v=hu133xtiQyM
.

Regine's entry generated 95 comments, including many compliments for both the photo and film. Martin also wrote an entry:

Your blog's become an ad for my movie. ☺

I don't understand why this had to happen…After everything that you've been through, I finally thought it was over. That you were free. I thought that now, when we got together, we wouldn't have to worry about cancer, or chemo, or the latest test results. That the next time I'd need to comfort you, it would be because you missed the bus, or because you didn't win a contest (although that's not very likely, since you come in first place no matter what☺.) But apparently lightning
can
strike twice . . . .

Last Friday, when we stayed up late chatting online and talked all about our plans for the future, everything seemed perfect. Even as late as Saturday, five minutes before you called, I was stopping at the wine store to pick up a bottle of wine for you—and then the asteroid hit, and time stopped, yet again.

But…but no matter what happens now, and how difficult things get, we have to do what we can to enjoy ourselves. There is clearly hope, and we'll get though this together! You're everything to me.

Love you, Regine.

Yours,

—
Martin

Under the title “Fear of Death,” Regine wrote the following on her PC on April 10 (not previously published):

Friday, April 10, 2009

W
hat are you supposed to do after you hear that you're going to die? It feels wrong to go home and just wait. You don't want to lie in bed and just watch yourself falling slowly apart. When the doctors give up, is it worth it to try other methods? Lots of people would probably try to contact hospitals in other countries, or try alternative treatments. But if nothing can be done, what do you do?

I got some very bad news last week: I've had a relapse. They discovered that 10 percent of the cells in my blood marrow are immature. That's the news that I had to wake up to on Saturday morning. The Easter holiday had finally arrived, and I'd already made so many plans. Not just for Easter, but for the whole year. I was going to go to concerts, and festivals, and I was going to start working as a journalist at the local paper. I was going to start school again in the fall. Then, suddenly, all my plans went down the drain. There are so many things I want to do, but I feel like my time is running out.

Although I've had a relapse, it doesn't mean that there's no hope. The doctors still have some options for me. But I don't feel like I have much hope left in me. My reserves are small, but they're still there. And it's important to keep believing that things can turn around, because otherwise I'll just go crazy. I just don't want any more bad news. My body might be able to keep on fighting, but psychologically I've got nothing left to give.

In the meantime I try to do things that I love. I have to use the time that I do have as best I can. First and foremost, I try to spend as much time as possible with my family and friends. They mean
everything to me, and without them I would never have gotten this far. And I'm so thankful that I have them, and that they're there for me. After all, I'm still the same person. I'm not just a cancer patient. A lot of people probably see me as “the girl with cancer,” but I don't want to be that person. I want to be normal again, even if only for a minute. Completely, totally normal. It's funny, but it's almost like I forget about everything else I have going on when people talk to me like a normal person, and when they behave completely naturally. Most people don't know what to say or do when they meet someone who has cancer. And although I can understand that, it still isn't very pleasant, and I don't think other cancer patients like it very much either.

When I'm not spending time with my family and friends (or even when I am), I also love to paint, take photos, take walks, and listen to music. I also love to write. It's amazing how much you can express through words and images. I've become a much better painter since I started working at it. The different brushes and color options can actually be really hard to manage over the course of a painting, but it's still super fun to try and learn on your own. I usually don't have anything specific I want to paint; I just start something and see where it goes. You definitely don't need good technical skills. I'm terrible at drawing. I think it just depends on creativity. If you're creative, there are no bad ideas. And I love it when I finally feel satisfied with something I've done. It's hard to think of anything else that feels so gratifying.

But more than anything else, I love photography. I love to be outside in nature and take pictures of whatever catches my eye. For me, when you're out in nature, there's hardly anything that isn't beautiful. Unfortunately, I haven't been in very good shape recently, so there haven't been many trips outside. I hope things improve. I feel energized when I take walks in the forest—when I'm able to just listen
to the sounds, smell the smells, and see the incredible beauty all around me.

It's impossible to describe what nature is: It's so many different things—but for me, there's nothing better in the world. That's why I can't understand why we're ruining it. The forest next to my house is my favorite place in the world. I've always loved it. When I was little, my parents had to take walks with me in the forest in the middle of the night to get me to stop crying. Now someone is trying to tear it down to make a profit. I don't like that at all. In fact, I hate it, because in some ways I think the forest and I share a kind of identity.

As I die, the forest dies too. At the same time that the cancer is spreading, so are the houses. It's Easter break now. Construction is on hold. Maybe the cancer will take a break, too? That's what I'm hoping for, and it's the only thing that can save me, too. Plan A has to work now. Cutting out the immune suppressing drugs has to stop the cancer. The new immune system has to work; they have to get rid of the cancer cells that are in the marrow. If not, I'll die.

I don't want to die, but at the same time I have the feeling that pretty soon I won't be able to take it anymore. I'm tired of fighting. I've tried just about everything there is to try. When the chemotherapy didn't work, I had to have a bone marrow transplant. Everything looked like it was going well, all the way up to the follow-up three months later. Then, our greatest fear became our new reality. And now all anyone can do is cry. That goes for me, too, even though it's the people around me who are taking it the hardest. In the end, they're the ones who will have to live with the grief if I die. I'm scared for them. Because how well can anyone handle losing a family member, or a best friend?

What is death, when it really comes down to it? Most people can't even begin to say what they think it is. And of course no one can really know. I'm not religious, but one day at the hospital I talked to
the hospital pastor there. He didn't care if I was religious or not. We just had a conversation about life and death and other difficult topics. I was surprised both by him and by myself. We managed to put words to some profoundly mysterious things. We talked about the incomprehensible. Since I'm not religious, I don't believe in life after death. I think it's like an endless sleep. That it all goes black. That one doesn't feel anymore, that one doesn't see anymore, that one doesn't get to experience anything anymore. Life goes on, but we don't. My mom thinks that the reason why all the good people on earth are taken from us is because they're being gathered to create a better place. That's a really beautiful idea, and I hope she's right, and that's the way it is. Because the world isn't a good place. People starve to death, people fight wars, people kill, people get sick, people die.

Most people don't realize how good their lives really are. When we're healthy, when we're doing well, we waste our energy on feelings of dissatisfaction. I wonder why. Because when our lives are turned
upside down, it doesn't matter how dissatisfied we felt before: The only thing we care about is surviving. There's no meaning to life. There's no reason for anything that happens.

How can there be a reason for a good person's death, for diseases, etc. It's fanatical to believe there's a meaning. You just have to accept that things are the way they are. There doesn't need to be a reason. At the same time, that doesn't mean you can't create your own meaning. The key word is
love
. If you don't have love in your life, you don't have anything to live for. We live because of our love for our family, for our friends, for nature, for music, for a certain hobby, for animals, and for boyfriends and girlfriends. That's when there's meaning in your life. That's my opinion anyway.

Waiting for death is dehumanizing. To feel your body just getting worse and worse. To have to wait for answers. For the only answer that matters: Will you live or will you die? Most teenagers spend their time worrying about how they've done on a test, but others—like me—wait to find out if they'll survive long enough to have another birthday. The world is unfair. For those of you who go on to live a long and happy life, I want you to try and give something back to the world. Think of all those other people whose lives are spent in suffering. Give. It's unbelievably important.

Tuesday, April 14, 2009

T
hings are going okay, even though we're all still struggling with the tragic news. I try not to think about it. I do things that I enjoy, and behave just like before. I spend time with friends, paint, photograph, etc. Painting is really therapeutic for me. It's especially fun when you notice your technique improving after doing the same thing several times over. A canvas can express so much.