Regine's Book (30 page)

In my training and in my work, I've studied many aspects of the human brain in depth. Even though I've read several thousand pages of literature on the subject (and am currently working on my dissertation) nothing has given me as much insight into a young human mind as your blog has. In the course of my long career, I've never come across anyone else—young or old—who has marshaled all the intricacies of language and art in order to give full voice to their emotional lives, as you have. With your talents, your gifts, and your pain, you've taught me more than I ever could dream of learning from books or scientific articles. I'm deeply thankful to you, Regine.

From all the hundred or so entries that I've read here, I've also gotten a fantastic sense of the emotional potential that we share as human beings. By far, the majority of the comments show how much concern and consideration we long to give each other. There's an incredible range of life experiences for our young people, as always: Some have experienced life's dark side, while others have been fed with a silver spoon their entire lives. The sad truth is that we don't often get to decide how our lives will begin and where they will end. Young people who haven't had to endure any crisis moments don't really have the ability to put themselves in the complicated spectrum of feelings and thoughts that you show here on your blog, and some of the comments can seem clumsy and not well thought out to someone who's just struggling to keep her head above water. But still, I see that a lot of these people try as hard as they can to give you tools that can help you—they really want to contribute to your recovery. From your position, you can see that some of these tools won't help you, and rightly so. Your intelligent responses to them show self-assurance and calm.

Unfortunately, I've met way too many people—young and old—who've read and seen
The Secret
. As a psychologist, I work with people's feelings and thought patterns on a daily basis, and on the
one hand, it's totally true that in some situations, it can be effective to think positively and see the possibilities, but in
The Secret
, that idea is expanded (not to say twisted) well beyond the point where it has real value.

If it were as simple as thinking positively, no one would ever die of cancer or any other miserable disease. When people uncritically accept the messages that show up in these types of books, I really believe that life's unhappy phases and experiences can lead to even more depression, and increased feelings of inadequacy. (Like I tell my students, “It's good to take your vitamins and nutritional supplements—but at the same time, you still need breakfast, lunch, and dinner too.”)

In your blog, through your text and photos, you've shown, with amazing clarity, that you—Regine—have used all of the tools at your disposal. You've appreciated friendship and family. You've gone to concerts and festivals. You've taken photos—excellent photos. You've engaged with the media when and where it felt right. You've definitely increased the number of blood and bone marrow donors. And you've
definitely
had an effect on making people more aware of what cancer does (emotionally and physically) and what cancer patients go through—not least among us psychologists. On some of your very worst days, you still managed to haul yourself up, get dressed, fix yourself up, and go for a walk. And on top of that, you managed to think positively about what you accomplished that day. There aren't many of us who could have managed that, Regine—no matter how old they are.

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

Monday, October 19, 2009

T
he 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.

Thursday, October 22, 2009

T
his 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.

Thursday, October 29, 2009

T
hings 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

T
hings 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 believe 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.