Regine's Book (31 page)

You've done so much, Regine!!!

You're built to last, and that's good. Not everyone is. I had a friend who wasn't, and he ended things suddenly and brutally.

The ones who give up don't have the slightest chance of getting well. Your courage and your will to live give you the best chance of survival.

You should be proud of the will and the endurance that you've shown in this fight.

You're not inhuman, Regine. You're extremely human. You're real, honest, down to earth, and extremely alive. You live in the here and now as few can.

Your eloquence shines through both your words and your photos, and that's really impressive. I take photographs, too, and I can honestly say that I use your photos (and your creative spirit!) for inspiration. I bet I'm not the only one. Based on the response you got from Morton Krogvold, it's clear that you're blessed with a special gift. Your art and your message are a true inspiration for thousands of people. (Myself included.)

I know you'll never give up, because you've shown such strength and courage.

Even if you have to close your eyes one day, even then, you won't have given up.

I think it's safe to say that you've already won in life. You've really shown what it is to live.

No matter how weak you may become in the future, I'll always believe that things will turn around for you. It's strange to say, but my own daughter's death has made me realize that anything is possible—for
both good and for ill. My belief is unyielding because I've seen the impossible happen with my own eyes.

I'm holding out hope for you, I'm praying for you, and believing in you—along with everyone else.

And I hope you don't have to suffer. You really don't deserve that kind of pain.

I know you've managed to touch a lot of people with your blog. And out there…

If I'd been twenty years younger, I really believe you would have convinced me to go into medical research. But it's a bit late for me, and so I'll leave it to the younger generation. The rest of us will do what we can in other ways.

Regine…you're living in the here and now. Even if it's tough.

Do the best you can; find happiness and pleasure wherever you can. Your family is lucky to have such an amazing daughter. I'm sure they know that. ☺

I still believe things can turn around, Regine. I do.

—
Warm thoughts, from a 37-year-old dad

Hi Regine,

I've read your blog for a while now, but I've never left any comments before. I've lost a lot of close friends to cancer, and I also have a serious diagnosis myself (not cancer). I recognize myself in what you say about “handling it”: “You're handling it so well” and “I could never handle it”—like you say: What choice is there?! Give up without trying? It's not in our nature! You have to do what you can; you hope and hope, but at the end of the day, hope won't change reality. It doesn't mean you have to give up, but in the end you just have to realize that there's nothing more for you to do. You've fought long and hard, and you and I and everyone else who reads your blog will continue to hope for a miracle. Someone came up with this “miracle” word, right?! And that means it's something that
could
happen! If it doesn't, I want you to know that you've touched a lot of lives; you've shown that it's possible
to live a good life even despite medications, pain, and the terror of the end.

You're in my thoughts, Regine—I'll light a candle for you tonight.

—
Julie

Sunday, November 8, 2009

A
s soon as I started taking the chemo pills again, the pain came back in full force. We immediately realized that it wasn't going to work. We called the doctors in Trondheim to ask about other options. After a while, the doctor decided I could get it intravenously instead. Thank God. I was going to take it for three days; today was the last day. I'm worried about how this will affect my blood values. It's important to find the right balance. Not too powerful, because then all the healthy cells will be killed, but not too weak either. I'm also really scared that it won't do anything at all. I want to live as long as possible. I really want to celebrate Christmas Eve this year, too, but it doesn't look good. Maybe we can celebrate Christmas early this year?

I've been slightly more energetic for the past few days. Silje and Karina visited me, and so did Eli. Eli and I even made chocolate fondue here one day. It turned out perfect (yummm). Otherwise I just try to make the most out of every day, even if I don't have energy to do too much. Yesterday I had a nice time with Mom, Dad, and Elise. We watched
P.S. I Love You,
which was really good. Sad but also enjoyable. We had a cake today and we gave Dad a gift for Father's Day. I'm really glad that I have my family with me. They're so great. I couldn't have handled this without them. I think about everything they've done for me since I got sick. They've really been there for me. They're also worn out from all of this. It's good that we get to be at home.

My ultimate dream for this blog is that it will be published as a book after my death. I know that a lot of people like this blog, so I think it would be a good idea. I know that my family will do anything they can to help. It would be so great.

I think about everything that I've been through since the relapse. Despite everything, I've really been able to enjoy the time I've had. I sincerely don't regret that I've kept trying. If it hadn't been for the doctors in Trondheim, I would have died in May. They did everything they possibly could. They tried all kinds of medications, and researched my options really carefully. I'm so happy they never gave up.

A girl emailed me a few days ago and told me she's started a project. If you send her a photo of yourself, a professional photographer will arrange all the photos on a large poster, and send it to me. I thought it was a great project, and it really made me happy. Check out her stuff over at her blog.

Monday, November 16, 2009

I
'm so worn out and tired of this. Everything's going wrong. I'm suffering and suffering. We had a shock today. The blood tests were insanely bad. We already knew that I would die—that it would come to this in the end. But that it's gone so quickly is really surprising. If things continue like this, it will all be over soon. It's pretty hard to think about everything that will be taken away from me, and everyone I'll leave behind. I'm in miserable shape during the day. It feels like I'm being tortured. I'm so sick that a lot of times I'm scared I'm dying. Luckily I'm on painkillers. But since I need such heavy doses, I've become dependent on them, too. If I wait too long between doses, I have withdrawal symptoms. I'm also taking antibiotics because my
infections have flared up again. I'm changing chemo medications tomorrow, but it's not guaranteed that they'll stop the cancer. I'm so scared…so scared. I don't want to die. Sometimes I think that it might be an escape, but I just wish I could get well. Get to live life. I miss my life so much.

My family spends a lot of time just crying together these days, and we have a lot of hard talks about serious things. I'm really lucky that I can talk to them about everything.

We're good at making the most of the time when I feel more or less okay. We've gotten so close!

Thursday, November 26, 2009

I
thought I'd post a quick update: The chemo knocked me out completely and I've been in bed ever since. I've never felt so terrible before. I was sure I would die. The worst part is that it didn't even help: It just killed my healthy cells—the ones I need so badly right now. I took a small break from the chemo, and I've managed to spend some quality time with my family in the evenings—some, but not enough (to put it mildly).

On November 24, we celebrated Christmas at home, since I probably won't be alive at Christmas. As we usually do, we invited Grandma and Grandpa. I was in good shape and we had a nice evening, luckily. We had a delicious Christmas dinner, and dressed up and decorated the house for the occasion. I'm so glad I was in good shape for everything. The only thing missing was presents, but that's not really what Christmas is about anyway.

There was a candlelit vigil for me today. I don't know how many people were standing in front of my house holding candles, but it was a lot. My whole family stood on the verandah taking it all in. It was
really touching, and we all really appreciated it. It's so nice to see how many people care. There were people I knew and people I didn't all mixed together in the crowd.

I started chemo again yesterday. I'm totally miserable, and I'm so tired of it. It will probably be my last chemo because my body can't tolerate it anymore. My stomach is shot since my spleen and liver are both so swollen. I'm still struggling with stomach pain, so I need big doses of painkillers. I don't think anyone can understand how exhausted I am, and how much pain I'm in.

Regine is in continual contact with Eli Ann. The best friends exchanged these text messages on November 28:

I just have to say that it's been such a powerful experience seeing you go through all of this. You've never let the cancer define who you are. The whole time you've been the same Regine as ever—the same
Regine that everyone loves so much. I have so much admiration for you. I hope we get to see each other soon!

—
Eli

Celebrating Christmas early on November 24, 2009. From left: Regine's mother Julianne, grandmother and grandfather, sister Elise, father Lasse, and Regine.

Things are just getting worse and worse. I can barely move. It hurts so much to even breathe. I have to start taking the sleeping pills that I mentioned before. But they won't knock me out for sure. They'll probably mess with my head, but…I really want to see you before it's too late. Maybe we can find a way, even though I'm usually out cold in bed. Just want to say that you have to take good care of yourself after I'm gone. Believe in yourself and follow your dreams. Look forward to graduating from high school. Then you can do what you want. And you'll definitely make new friends. Promise me that you'll have a good life. That's the best gift that you can give to me.

—
Regine

Tuesday, December 1, 2009

T
hings are going really badly these days. Today I probably sat up for a total of two hours. Otherwise I've just been lying in bed. The pain in my spleen is excruciating. If feels like it did last fall when I had a spleen infarct. But I don't really know what it is—we haven't done any tests since there's nothing we could do about the results anyway. I couldn't complete the chemo cycle. My body just couldn't tolerate it, and absolutely no chemo medications were attacking the cancer cells. The white blood cells (the leukocytes) have risen to 200, so it's a miracle I'm still alive. I could die at any minute now, and I can feel it in my body, too. I've never been so sick before, and it's an absurdly terrifying feeling. But at least right now I'm not as afraid of dying as I was before. Maybe because I'm so worn out and exhausted and in such pain. I'm
still scared, but not as much as before. I'm more worried about the people around me, the ones who have to stay behind and grieve. I'm so grateful for all the support I've gotten during this time—from family, from friends, and from my blog readers. You have no idea how much you mean to me.

By the way, a few days ago I received the poster you readers put together for me. It turned out so well—and it's so giant! Special thanks to all who spent their free time putting it together. Also want to announce that we earned 106,000 crowns from the clothes sold on Beltespenner. Altogether we've collected about 300,000 crowns—all of which will be donated to fighting cancer. Thank you so much to everyone who contributed.

Regine's last four entries resulted in 6,698 reader comments. Here's a small selection:

Dear Regine! It's so painful for me to read about your declining health. No one deserves to go through what you've gone through. I've never been as adamant in my belief in an afterlife as I am right now. I know in my heart that there must be something good out there waiting you. You've been so strong—no one could have been stronger—and you've shown such an amazing will to live the life that's suddenly being taken away from you. I wish you all the best, Regine, and I hope that there's something better out there that can give you the happiness you deserve. You've given so much of yourself in your too-brief life. You've lived life to the fullest, and that's as much as we can ask from anyone. You've inspired everyone you've come into contact with, and your soul will shine like a star, forever. (But in the meantime, in my heart, I still hope that a miracle will give you back your life.)