It'll be good to get away for a while. I need this trip. I'm going to try to go shopping, go to cafes, and enjoy myself as much as possible.
Going with the flow
Tuesday, October 6, 2009
Eli and I are sitting in the Trondheim apartment, right in front of the TV. So far the trip has gone really well. It started out kind of rough yesterday, when I woke up with a fever of almost 104! I was worried that all of our plans would go down the drain, but luckily I'm in better shape today. I went to the hospital and it doesn't look like we'll be able to start the cycle this week. I'm trying not to think too much about the blood test results or anything else like that. I don't want to worry, so basically I decided that I didn't want to know the white blood cell count. The ultrasounds they took of my stomach were fine at least. I've been struggling with stomach pains for over a month now, but they gave me some antacids and I think they're helping. Finally.
After going to the hospital, Eli and I went shopping in town. I managed to spend way too much money at the first store. But I don't shop that often, so I guess I have an excuse. They had so much cute stuff. Eli bought a badass leather jacket that I was a little bit jealous of. ☺ Since I get tired so fast, we didn't shop for long, and after about an hour we went back to the apartment. By the way, the apartment is actually pretty nice! It's so great that the Cancer Society for Children has this kind of setup. I think it's important to have a place like this.
Later in the evening, it was time to eat. We went to Jonathan's Food & Wine Cellar, under the Britannia hotel. The food was incredible. It's expensive, but it's worth it! I really recommend it: awesome service, nice people, and such delicious food. What else can you ask for?
We're going to watch a movie now, and just relax and enjoy ourselves. I hope you all are doing well, too!
Another blow to the head
Thursday, October 8, 2009
Things haven't exactly turned out as planned. Today I got some really bad news. I went to the hospital for blood tests and the results were catastrophic. They confirmed that the Vidaza isn't working anymore. The aggressive cells have come back and I probably have one foot in the grave. They want to start me on a low-dose chemo cycle, but it's only helped one person get into remission before me. Most likely it will let me live on for a little longer than I otherwise would. I asked the doctor how long I could live while taking these pills. They told me anywhere from several weeks to several months. But they also said it was important to remember that there was still a tiny chance. I take that to mean there's no chance at all.
I've been crying nonstop since one o'clock today. My face is totally swollen. My eyes are sore. This wasn't supposed to happen. The last time I met with the doctors we discussed the future, and talked about when I could start taking classes again—and now all of a sudden, it looks like I'm going to die. Things changed so fast, and I don't understand anything. This is the worst thing I've ever experienced. Going through something like this is just absolutely brutal. No one deserves this.
I'm thinking about my family having to go through all of this. It's so awful to think about. It's not just my life that's being ruined. I really don't know how I'm going to get through the next few days. I really don't know.
In total, 1,165 readers sent Regine their encouragement after this entry. Here's a small selection:
Regine…This is so, so sad to hear! I've been reading your blog for so long now…through all the ups and downs…I feel so close to everything, as if I knew you. I often think of you. I'm a nursing student and I meet a lot of people with the same diagnosis as yours at the hospital, and so this seems especially real to me now. This is all so unfair!!!
—Anonymous
Don't be afraid. Remember that you're unique, and totally one-of-a-kind. Special people like you, Regine, survive everything. You have to fight tooth and nail on your way to getting well. Hang in there; you're fantastic.
You also take incredible photos. You're an artist, Regine, and you'll go far with your art. It's a subject you should consider pursuing when you start university. Your art and creativity are unique. With your amazing talent, you'll get far in life. Fight, Regine, FIGHT. We all love you very much. A big warm hug from everyone to you, Regine. ♥
—Anne Marie
Dear Regine,
You've made your way through your short life, and moved people all over the country in the process. You've changed people's attitudes, thoughts, and values—you've touched us with the stinging, painful, and profound stories from your life. Thank you so much! No one knows where your path will lead next, but there are a lot of us who keep you, your family, and your friends in our thoughts. It's a small consolation, I realize that, but still…
—Many warm thoughts from Hanna
This is difficult stuff, Regine. With all the bad news you and your family have received lately, I hope that your doctors have offered you the option of professional counseling. Your entire family is tough, but what you're going though is brutal. The good thing is that you've been faced with similar issues before, and impressively enough you still found happiness afterward. I'm following the suggestion of the person who proposed that we think of you every morning and evening at eight o'clock. It can't hurt, anyway. Say hi to your parents.
—Bengt E.
I love you!
—Sofsen
Dear Regine,
You're the same age as my youngest daughter, and thinking about what you must be going through is just heartbreaking. I sympathize with you and your closest family and friends who probably feel so incredibly helpless right now. No matter what happens, you've accomplished so much more than most other people do in the course of a normal life span. You've moved the entire country. You've brought out empathy and emotions in total strangers, Regine. That's a huge accomplishment. There were 500 people who commented on your last post, and we don't know how many others also read the news and cried.
Don't underestimate your body's power to heal itself. You have to believe it's possible; you have to imagine that you're healthy and strong! I'm going to participate in the vigil for you, and I also light a candle each night at eight pm. It's been decided, Regine: You'll be the second person to go into remission from this treatment.
—Ase
It says “Face your fear” when we click on your blog, and you've shown the whole country that, true to your word, you're really staring down your biggest fear now that the chips are down. You need to know that there are thousands of people thinking about you, and that YOU'RE NOT alone!
Friends and strangers alike are impressed by you, and love what you've done (and who you've shown yourself to be) on your blog.
You're not going anywhere. Long live Regine Stokke—the girl who faced her fear.
—Thea
You've shared your words, thoughts, fears, and smiles with us all. And there are many, many people in this country who you have moved to tears. If only our thoughts could make you well…
You have, in any case, gotten me to think a lot about how lucky I am to be healthy, and you've made me think more about what I can do to help. Thanks to you, I'm now a blood and bone marrow donor. I'M THINKING OF YOU AND HOPING FOR THE BEST!!
—Angelique
I'm crying.
I don't know what I'm going to do. I can't do anything but hope.
My life hasn't been the same since I started reading your blog, close to a year ago now.
You're incredible!
—Ida
Regine!
You don't know how beautiful you are. You've melted the hearts of thousands of people out here, including me.
You've inspired a 37-year-old dad to become a blogger, and you've made a 37-year-old father shed real, honest tears.
Do you know what? I've got young children, and they've asked me why their dad never cries. I'm a father, and I cry. But I'm probably like most men: I can only cry when my children can't see me.
But now they've seen that their daddy can cry, and do you know why? Th
ey've seen me crying because I've read your whole blog…You have an amazing power to awaken feelings in other people, Regine.
I've told them about you and your disease. They want me to say hello from them. They're also thinking of you.
You've done so much with your blog—you have no idea.
You've made it easier for people to talk about serious diseases. You've made it easier to understand what life is like for seriously ill people.
One of my kids is often very sick, so I know what it's like to be in your family's shoes.
Take in all the love that people send to you, Regine. It's real, and we're really thinking about you.
You're probably scared to death. You're worn out and tired, but I have a belief burning inside me: Everything will work out in the end; everything will get better.
The fact that one person has made it before means that it's worth trying. It will be wonderful when the doctors can say that not one, but two people have now made it.
I believe in you, Regine. You're obviously stronger than most people. I have faith that this will work.
Regine…you're so important. You're courageous and persistent. You're an inspiration without equal, and you're such a beautiful human being.
You show the true fullness of life in yoaur blog. You capture the vividness of the world in your photos. You're so vital, so full of life that I can't see how life could ever be taken away from you.
Take care of yourself, Regine, and do everything you can to keep your hope alive.
A warm greeting from someone who admires you, and will admire you forever.
—A 37-year-old dad
Regine's poem generated 200 comments. Most of them contained high praise and were filled with adjectives like beautiful, lovely, and powerful.
It's wonderful how much you have inside you, Regine. Just think of how much you've done, and how much you've provided for other people! The list includes:
your descriptive and (for us readers) informative blog posts,
artful, high-quality photographs, and
a fantastically compelling poem that I just had the honor of reading.
You've augmented your surroundings with intelligence, art, and inspiration. You've offered more than healthy people EVER give. It's Incredible to think of how much you've done—even while fighting this battle.
Opium
Thursday, October 15, 2009
Give me sweet candy. Give me sweet dreams.
I don't want to feel anymore. I don't want to be where I am.
I want to swerve. I want to dance.
I want to smile. I want to laugh.
Let me avoid today. Just let me pretend.
Pretend that I'm another me. Let me escape the shadows, evade the fog.
I'd rather be under the starry sky, see the northern lights.
I don't want to think. Just for today. I want to be spared.
I want my body to sing inside.
Because this shadow dance in the dark isn't me.
Give me sweet candy. Give me sweet dreams.
It's only fair that you get back some of the magic that you've put out into the world. It's only fair that you achieve your goal (and our dream for you): a long life.
—Bengt
Hi there! Every day when I turn on my PC, the first thing that I do is check your blog. What's happening? Where is she? What's she doing, what's she thinking, what does she wish for, what's she feeling? And when you don't post anything, I get anxious.
Everyone is hoping you'll get good news soon! The poem you wrote is beautiful, Regine…You're so talented. Katrine, Camilla, Kristiina, and I talk about you often, and never stop thinking about you and wishing you well! We're with you!
I went to take tests to see if I could become a blood donor after you encouraged us, and do you know what? They need my blood type, so I'll get going with that on Tuesday. They said there were many people who registered here in Kristiansund after you asked them to give blood! THAT'S ALL THANKS TO YOU! Well, say hello to your family, and keep it up.
—Hugs from Marianne
A stranger to myself
Saturday, October 17, 2009
I've lived all I can.
I've done my best
To live.
But still, I don't get anything back.
Everything's been taken from me.
Soon, there will be nothing left.
Less and less every day.
Soon nothing will be left of me.
I want to exist, but this body can't carry me any longer.
I fall apart alone.
I'm the only one who's able to feel this pain.
Desperation.
Frustration.
There's nothing I can do.
It's not up to me.
Nothing is up to me.
Even my face feels strange to me.
I assume I died a year ago.
Something has taken hold of me, something I didn't want, and never asked for.
Something that will continue eating me until I'm gone.
I'll never be set free.
Regine's brutally honest description of her situation generated 415 comments. The psychologist's comment was representative of a large group of grateful readers. And Thea and Proben's comment represented a large group who were left speechless:
We're completely speechless. This is really hard to read. But we still hope that the tide will turn, and that things will start to get better soon.
Is there anything we can do…anything at all?
As we said, we're speechless, but we're thinking a lot about you and your family!!
—Thea & Proben
No, Regine. You didn't die a year ago. This fantastic and impressive blog isn't the work of someone who's died. It's the work of someone who's alive and very talented—someone with a strong will to live. And it's written by one of the strongest and most impressive people I know.
If best wishes, crossed fingers and toes, prayers, and hope could get rid of the disease that's taken up residence in you, the disease would have lost a long time ago. But unfortunately it doesn't work that way.
Regine, thank you for giving so much of yourself to those of us who are sitting on the sidelines, hoping and praying for a miracle.
With a big hug from me to you.
—CSG
Dear Regine,
I've been following your blog for a long time but never written any comments. I'm an aspiring psychologist and, of course, a fellow human being, and I've experienced some incredible happiness and some incredible sorrow in my life.
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 p
eople 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.
Regine's Book Page 20