You've done everything you could do, Regine. You've done more than anyone could imagine in a situation like yours. You've demonstrated a will to live and an energy to survive that few of us are capable of. You take my breath away.
I wish for days where you can push the pause button—moments where you can sit back and savor the sweetest candy in the world. Moments where you can just be.
With thanks and admiration. ☺
—The Psychologist
Where did I go?
Monday, October 19, 2009
The past few days have been harder and more challenging than anything I've ever experienced before (and trust me when I say that even that's an understatement). I've never been this worn out before. The stomachaches are wrenching; I can hardly stand the pain.
The painkillers haven't worked as well as I had hoped they would. The pain isn't constant, but when it starts, it's really bad. It's all so frustrating—you have no idea. All you can do is just sit there, totally helpless. I haven't had a fever for a few days, which means that the antibiotics are working, but nothing helps with these stomach pains. I've had two ultrasounds and a CT scan, but nothing shows up there. Luckily during the “healthy” moments, a lot of people have come and visited me. That makes me feel a lot better. The TV's like my best friend now. A lot of times, it's the only thing I can stand to do. Luckily though, my family doesn't mind watching with me, so I don't get too lonely. I'm fed up with just surviving, but in a way I'm proud to even be managing that much.
Wrong turn
Thursday, October 22, 2009
This pain is unbearable. I haven't been able to have any visitors, but it was really nice of the attending nurse to come out to the house yesterday to set up the pain pump. She had to put a needle in my stomach, which is really unpleasant. It hurt a lot, and I don't like dragging the big stand around with me either. My skin is so sensitive now that even pressing the button to get more of the pain medication made me cry out, it hurt so much. (And it didn't help anyway, so I decided to take it out.)
I've been in a lot of pain again today. I tried wearing the pain patch again. And I'm taking Oxynorms, which are morphine-like pills. My body is so accustomed to the painkillers that the normal dosage isn't enough for me. Frustrating. Right now it feels like I took too much; my head is spinning and I'm nauseous. But at least the pain is gone.
I'm not sure what to say about the blood tests. The white blood count is going up again, but the Trondheim doctors want me to continue taking the chemo for another week before they decide on next steps. I see where things are heading.
Waiting for the end
Thursday, October 29, 2009
Things aren't going well these days. My blood tests have gotten much worse, and the pills aren't working well either. I'm in such pain these days that I can hardly do anything. I just have to stuff myself with painkillers and just lie in bed. I can hardly eat anything. I had to start taking an antibiotic because my C-reative protein levels have gone up a lot these last days (which generally indicates that my body is experiencing a bit of inflammation). No one knows what's causing it.
I'm trying to focus on the fact that at least I've lived a good life, and enjoyed everything as much as I possibly could. I've had tons of great experiences. I had a great childhood, and lots of great times out with family and friends. I've always enjoyed life, which makes it hard to think about all the things I'm going to miss out on now. I don't want to miss out on the future with my family and friends. I want to study. I want to have a family. I want to live a good life. I want to do everything. But I'm not the one in control. That's just the way it is. It's so depressing and sad. I could have had such a wonderful life, if it hadn't been for this evil disease.
A lot of people are complaining that the support group on Facebook isn't being updated. I'm not in contact with any of the administrators and don't have any control over the group, but I hope people still want to join up and show support. ☺
…
Thursday, November 5, 2009
Things are getting worse and worse every day. This is the worst my blood tests have ever been. My leukocytes are at 40. I've been off chemo for a week now, but the chemo wasn't working anyway. The doctors in Trondheim want me to continue taking the pills even if they're not working. I'm going to take a few more of them, but still…I was surprised by their decision. But they may not have anything else to offer. The pain has been a bit better lately, but that may change now that I'm going to start the chemo again. The infection I had has at least calmed down.
My worst fear has come true. A cure is now completely impossible for me. It won't be long before I die. All I want is to live, but I can't. I've fought and fought; I've done everything possible, and at this point there's nothing left to do. If the disease doesn't loosen its grip, it won't be long before it sucks me down. I'm scared to death, and sad.
People shouldn't think that I've handled this well, because I haven't. I'm human after all. A lot of times it seems like people don't see me that way. I'm handling this like anybody else would. I have no choice but to deal with this. A lot of people have said they couldn't have done it. But what would they have done instead?
No one can say I've given up. I hate it when people say that. I've done everything I possibly could. But this is something I have zero control over.
You wouldn't think that life in 2009 would be so dangerous, but it is. If you get a serious disease, you're out of luck. Of course, a lot of people do get well, but there are so many others who don't. You're the future, so I encourage you to try doing something to help. Support medical research, become researchers yourselves—there's a lot you can do, if you put your mind to it.
Sentences like “All I want is to live, but I can't” moved more people than ever. Regine's two previous entries resulted in 1,699 comments. Here's a small selection:
“Life is like a box of chocolates”—you never know what you'll get…Cancer is a monster that chooses its victims randomly, and it could just as well have been me. There aren't any guarantees in life, and even if you don't get cancer, you could die in a car accident tomorrow! Who knows, Regine, maybe Norway will be annihilated by an atom bomb in two years, and we'll all die. Maybe there's going to be a killer virus that kills all mankind…and maybe not…One thing that's certain is that nothing is certain; nothing lasts forever. Some people live to be 87 without having truly lived a day in their lives. I'm a nurse and I want you to know that I see many people who die alone, with no one at their side, with no one to mourn for them…. Yes they've lived, but without making tracks. You have truly made your mark, Regine, and there are thousands of people who have followed your story who will keep it with them for the rest of their lives. I understand that death is difficult, and maybe even impossible to come to terms with. But who knows what happens after this…I believe that something does, and I believe that it's only then that we'll get the answers to all of life's big questions. Things will work out for you, Regine, I just know it.
Big hug,
—Anonymous
I watch the snow falling slowly from the sky, and it reminds me of my tears. Every snowflake is like a life in miniature: It's ephemeral, and it rushes toward its end. More than anything, I wish you peaceful and happy days with your loved ones—days without fear or pain.
I don't know why people write, “Don't give up.” It's obvious to me at least that you'd never give up. You're doing the exact opposite of giving up. You're seeing the situation for what it is, you're realistic about the outcome, and you're handling it all as best you can. And you're doing it bravely and with dignity.
I'm thinking of you and will light a candle for you tonight, my dear Regine. Please take a break from your sorrowful thoughts—however understandable they may be—and let a wave of loving thoughts and feelings (from so very many people) wash over you. Can you feel the warmth?
—Frances
You're not inhuman; you're proof that there's hope for everyone. You give people something to belie
ve in—and you're hanging in there like nobody's business. You're strong. And it's profoundly generous of you to share your experiences with us all. It's sad to read about your daily reality. I could easily fill pages of this comment board with my reactions, but I doubt that my words would make you feel any better. But there are a lot of us out here who've learned valuable lessons from you, simply due to your incredibly insightful nature. We've learned to appreciate every day, because cancer can hit anyone, anywhere.
Regine, I admire you so much. You're such a good example. Not just for me, but for so many others as well! If only there were more people like you. I'm crossing my fingers for you!
—Hugs from Anne-Bente
Hi Regine,
I'm a leukemia patient who's receiving life-extending treatment, and I just wanted to say that your blog has been a rare bright spot for me. What you've put into words—your feelings, your experiences, and your responses to the comments—have given me a new strength, a new sense of meaning, and a new way of understanding. I admire the courage you show in displaying your rawest human side. I've wished with my whole heart for your recovery. I know you won't give up!
—Tore
Dear Regine!
You're handling things in your own way. It's not necessary to analyze it or wonder how someone else would do it. You're obviously handling it in the best possible way. (Or anyway, that's what I think.) Among other things, you've decided to work through your reactions in this blog. You've found your own way to deal with everything. And you've been extremely successful. Maybe this blog is one of the key things that's enabled you to hang in there. That, and your irrepressible will to live; your love of your friends and family; your passion for art and for creation—even in the face of all of this pain. That's what you're accomplishing now, Regine: You're advocating for art in an amazingly visceral way. You capture what is light and colorful, and what is heavy, dark, and painful. That range of emotions is what makes your art so much more alive than a lot of other art I've seen. Your last self-portrait in black and white is one of the most powerful photos I've ever seen. I've been to several workshops with the photographer Morten Krogvold, but your last self-portrait is way better than what I saw there.
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
Here it comes again…
Sunday, November 8, 2009
As 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.
Soon it will all be over
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.
Regine's Book Page 21