Regine's Book (13 page)

I hardly notice the disease. That's probably the reason why I've managed not to think about it as much recently. I still haven't had any reactions to the changes in my medication, but then again, it's only been a week. I have to wait another seven days or so. I'm anxious to hear what the doctors will say after their Tuesday meeting. I'm not really expecting that there will be much to report, but I'm scared to death of getting more bad news. I'm also dreading the next bone marrow test. Am not sure when it will happen, but definitely within a week. What if the disease has progressed?

In other news, Martin and I went for a nice walk today. We took photos and had some fun. Martin's also a really good photographer. You'll get to see some of his pictures, and you can see my paintings later, if you're interested. Go to
www.smirr.deviantart.com/gallery
to see more of my photos. I also uploaded some of Martin's photos there.

Tuesday, April 14, 2009

T
he doctors don't think they can do anything more for me except give me chemo to prolong my life. That means I don't have much longer to live. Without the chemo, I wouldn't even make it to eighteen. I don't know why they don't want to try the other alternatives they mentioned. I also don't know why they won't try out a lot of the things that have cured other patients. Right now I'm just feeling desperate and sad, and I have no idea what I should do. I'm going to die. What am I supposed to do in the meantime? I absolutely refuse this slow torture. I feel in my body that I'm getting worse and worse. I refuse to rot away like a vegetable. I refuse to just lie there until I can't talk anymore.

I feel like I'm in great shape physically, and I just don't understand why they're giving up on me like this. It's so damn unfair.
I'm healthier now than I was before the transplant, so I could definitely tolerate another round. I know I could. But they refuse to try. Receiving chemo just to lengthen my life is the dumbest thing I've ever heard of. What kind of a life would that be? A life in quarantine and sadness, just waiting for death? No way. Hell no.

Regine's entry and subsequent front-page features in
Dagbladet
and the
Kristiansund Daily
generated 1,125 comments on her blog. Here's a small selection.

Is there anything we can do to change their minds? And weren't you given a reason? It's just terrible. They can't do that!! Not to you. You're too young, too healthy. ☹ Ok, now I'm just crying.

—
Kamilla

This is totally wrong…I'm sure your parents will try to get you the help you need. Don't give up. Things will work out! We've started collecting money so you can travel overseas if you need to—so don't forget that we're all behind you. Everyone in Kristiansund thinks about you daily and loves you, you know. Keep your head up, Regine…Fight back with everything you have.

—
Hug from Marianne

Ask people you know (and even people you don't know) for help in finding out what alternative treatments are available and what you need to do to get them. We're also thinking about you in Averoya, and in the blogosphere. Marianne—if you start a collection, there are a lot of us who will contribute, both with money and with getting the word out!

And Regine, one can't help being moved by you and touched by your words. In the midst of all this, you have to try to live a bit, too;
you have to try not to put all of your energy toward fighting the disease. Do things that you enjoy, and be with people that you like. As much as I want to, I can't promise you that everything will go well, but I really hope so, with all my heart.

—
Warm hugs from Hestiaverden

According to the patient rights laws, since you are not in agreement with the current treatment plan, you are entitled to a new evaluation. The doctors can't possibly have the right to just give up, especially without even giving you an explanation as to why. It's totally unbelievable. If you call the cancer line they might be able to answer some of your questions; at the very least, they'll definitely know a bit about options for treatment overseas. I'm supporting the people who proposed starting a fund for you, and I'm sure there are many others who would love to do the same! Everyone deserves a chance, and it's totally shocking that the doctors don't seem prepared to give you yours! Don't back down!

—
Anja

I just don't know what to say. What an awful thing to hear! You're an incredibly strong girl and really deserve so much more. Continue to stand up for yourself and demand everything that can possibly be of help. They can't just give up on such a young life. I really hope there is a way out of this, and that you get to live the life you've fought so hard for.

—
Anne Marthe

Wednesday, April 15, 2009

I
've had another talk with the doctors. They don't think they can do anything else for me, as they already said. They don't think that a new transplant would help. They don't think there is anything at all that can cure me. That's the reason they don't want to try anything else. Instead, they think it's better for me to receive chemo once the disease enters my blood, even though that's not much help. It won't lengthen my life very much either. It's unlikely that I'll make it to my eighteenth birthday.

I appreciate all the comments on this blog. And I'm grateful that people want to collect money—but I wonder if it will really help now. It's not as simple as just raising millions and traveling overseas for treatment. What we need help with is finding a hospital that will review the case, and figure out if they can actually help me. Do they think I have a chance? Is there something new they're willing to try? Do they think there's a treatment that makes sense?

I need specific hospitals. (Germany? The US?)

If there are any hospitals that might be able to help, I would love to hear about them.

Thursday, April 16, 2009

I
really appreciate all your comments and concern. It's completely overwhelming; I don't know what to say. But the doctors at Riksen have been totally incredible. Don't put the blame on them. They are just doing what they think is right. They have, after all, done a lot for me; they've done everything they could, according to them. They're basing their decisions on all of the available subject literature, research, experience, scholarship, other doctors overseas, etc.
The doctors at Riksen say I am close to 100 percent incurable. But I know that people in my situation have recovered and gotten well. I've received mail and read about them myself. Isn't it worthwhile to give it one more try?

We've decided to get my medical records, translate them, and ask one of the doctors here if he can help us make the transition to another treatment center. We want to have a new evaluation. Maybe there are some doctors out there who think there is hope? I just can't come to terms with giving up. There must be something…even if the doctors say there isn't.

This sounds incredibly strange and freaky, but I actually told my parents before the transplant that I would get through it, but that I would have a relapse after three months. That's pretty sick. I also had a sighting on the way up to Trondheim for chemo. I saw an American flag. I had a quick glimpse of it while I was looking out at the forest. (I probably sound creepy, but it's true.) Probably dumb of me to even mention it.

In any case, I really appreciate your comments and emails, etc. But there's something I need to say: I've received so many responses on email and text that it's a bit much. If you would like to leave a nice supportive message comment for me, you can do it here on the blog. It's hard for me to respond to email and text because there are so many. I've already had 68,000 page views just today. I don't want to offend anyone, but I hope you understand. I really appreciate it.

I think there was something else that I wanted to mention, but I can't remember it now. Anyway, I'll update you as soon as I know more. I'm also open to hearing about suggestions for hospitals abroad, etc. I'll check out the ones that are recommended.

By the way, was there someone who said my ears should be burning since everyone is thinking and talking about me? Well, my ears have literally been tingling since yesterday!

Thursday, April 16, 2009

T
oday I had a visit from
Dagbladet
. A journalist and a photographer were here. They were really friendly and spent a lot of time with me. The interview will probably be aired tomorrow. Watch it!

The doctor in Kristiansund agreed to contact some hospitals in New York for evaluations. Hoping for a positive answer!

Friday, April 17, 2009

T
oday there's already been a lot of action. A lot of people have called; a lot of people have sent messages and email. A pervert called me and said he was jerking off. Sick. And yesterday a girl called me the devil because I wasn't a Christian. (I thought that was really spiteful.)

Anyway, I was really pleased with the articles in
Dagbladet
and the
Kristiansund Daily
. There will also be an article in the online version of
Adresseavisa
. I think there will also be a video of me on the
Dagbladet
website.

Other journalists have contacted me, but I've had to decline those interviews because of other plans. It makes me feel bad, but sometimes that's just the way it is.

I got a call from a really nice man this morning who asked me if I wanted to do an exhibition in two months. That made me so happy. I hope I can make it until then.

Today I'm going to paint with Else.
³
I hope it will be fun. I'm also trying to decide if I should let NRK More and Romsdal
⁴
come and film us; I'm not quite sure yet. (Update: I just invited them.) There's a lot going on right now, and I know that I have to be selective; I hope I don't overdo it or make any big mistakes.

Friday, April 17, 2009

B
y the way, you can see me on TVNorge tonight at 6:00 pm, and on NRK1 at 6:40 pm. If you're interested. There is also a video available on
Dagbladet
's website:
www.dagbladet.no/2009/04/17/nyheter/kreft/5787034/
.

It's been a really busy day—so many emails and Facebook posts and texts and calls! Luckily, I was able to relax and paint a bit over at Else's house. She's an amazing woman. I'm still sitting here, and we've had lunch and really enjoyed ourselves. It's been a good break from all the stress. I had to turn off the telephone because it wouldn't stop ringing.

Update: TVNorge didn't show the feature about me. I don't know why. Maybe they'll show it later?

That aside, the Facebook group dedicated to my situation is called
Vi som skal kjempe for Regine Stokke
.
⁵
They're doing a collection auction. It's serious. If the money can't be used for me, it will either go to a nonprofit that does research on myelodysplatic syndrome, or it might also be used to better the conditions of children and adults with cancer.

Update: Now you can read about me in Swedish newspapers. My story has apparently spread like wildfire: You can find it online in the April 17, 2009, edition of the paper.

Saturday, April 18, 2009

M
aybe a lot of people are taken aback by the fact that I make so many media appearances. A lot of people probably think I'm starved for attention or something (and I'm sure that there are also a lot of other people who think it's great). I just think it's important to make people aware of the issues. Many young people feel alone in this type of situation. In a small city, you rarely find more than one young cancer patient. And it's so incredibly hard to have to live through this type of situation. You feel as if no one understands you, and you feel like it can't really be happening. And I totally understand that! You have to go through something like this before you can understand what it's really like, and understand what it's like to live with this crippling sense of uncertainty. “Will I survive this?” you ask. And it's a thought that affects all cancer patients (and others who are seriously ill).

This type of thing helps to bring out the best in people. People get involved; people contribute. You don't always have to contribute with money either. It's enough to just be a supportive human being. It's enough to show up, and simply show that you care. It's incredibly important for people to get involved with things that are outside the realm of their own experiences. There are plenty of healthy, smart, capable people out there who can really be of service. There are so many people who suffer every day, who need your help and support, both in terms of money and also just in terms of human fellowship.
And that's why I'm encouraging you to do something about this—those of you who can.

Something that didn't come across very well in my interviews is that I'm very concerned with getting people to register as blood and bone marrow donors.

It's hugely important, and I've written about this issue before. I hope people just go out and
do it
instead of dragging their heels and “thinking about it.” That one simple act can help to save lives. And isn't it rewarding to do something for others?

There have been so many write-ups about me in the media recently! I saw some more today. You can read more about me in today's editions of the
Kristiansund Daily
and
Dagbladet:
www.dagbladet.no/2009/04/18/nyheter/innenriks/sykdom/kreft/kreftforskning/5794831/
.

As I mentioned earlier, they're taking a collection for me. My hope is that they raise a ton of money for myelodysplastic syndrome research and for improving conditions for child and adult cancer patients. You can read more about this on the Facebook page “In support of Regine Stokke.” A web page will be set up eventually, and I'll get back to you with more information about that later.