Regine's Book (27 page)

Donating stem cells is completely safe and is done by drawing blood or bone marrow. Everyone has ample bone marrow, and the small amount taken out is replaced by the body in a few days.

Imagine knowing that you might have saved a life—it must be a great feeling. Those are the things that give life meaning. Even if there's no guarantee that the bone marrow transplant will be successful, you'll still have given someone a chance at recovery. I wouldn't have had a chance without at least a transplant, and it felt amazing just to have the opportunity. The donor gave me hope, and I still have hope that I can manage to have another stem cell transplant in order to get well (even if things don't look too good right now).

This is an appeal to register, people.

N.B.: You must be over eighteen in order to act as either a blood or a bone marrow donor.

The Last Autumn, 2009

Tuesday, September 1, 2009

J
ust thought I'd post a quick update, even though there's not much to write about anymore. My motivation is basically gone. I'm consumed with dark thoughts. My strength has evaporated. I'm worn out. Life's a struggle. I've lived with this for a long time now—this uncertainty, this fight between life and death. It does something to you, psychically. Not being able to participate in life, not being able to pursue your dreams, and just not knowing…it kills the joy of being alive.

My blood tests have at least been stable, but blood tests aren't everything. On Monday I'm going to Trondheim for a bone marrow biopsy. I haven't been over there for a while now. I don't have any idea what to expect, but I probably shouldn't be too optimistic. I've been through around four to five cycles of Vidaza now, and they say you need to have six before the medicine really takes effect. I'm really anxious about the results. I almost don't want to know what they are, just on the off chance that they'll signal the end. I need motivation, and if the test shows signs of improvement, it'll be easier to carry on. If it looks really bad, or if the numbers haven't improved at all…then I'll be crushed. I'm tired of the uncertainty though. Once I see the results, I'll have a better sense of whether or not it's worth continuing.

I just want to be myself again, but something is telling me it's never going to happen.

Saturday, September 5, 2009

T
hings aren't going very well these days. I've gotten even worse. I don't know exactly what's going on though. It started with some stomach pains on Monday. Was examined by a doctor on Wednesday, but it's hard to give an accurate diagnosis when all you can do is just press on my stomach. My other pains have also gotten worse—especially in my muscles and my bones. I have trouble walking. It doesn't help that I get headaches either. No, it's just misery, you guys. I've probably gotten some kind of virus. I've also had a fever these last two days. In the evenings. But I haven't had the energy to go to the hospital. Hopefully it won't get too high, because then I'd have no choice: I'd have to go to the hospital.

Tonight I'm planning on watching the Norwegian national soccer team play. I've even bet money on the game. So despite everything, I'm pretty excited about that.

Yesterday I got a package from the Record Company. I got
Magnolia
,
12 Monkeys
,
Spider
,
The Rules of Attraction
,
Naked Lunch,
and Tool's
Undertow
.

So at least I'll have something to do for the next few days. Can anyone recommend some other movies?

I found a picture of myself in London from last year. I want to go back! I miss just being able to do things like that. It's crazy to think that was only a year ago. Things sure can change fast.

Regine in London, Easter 2008

Tuesday, September 8, 2009

W
e checked into Trondheim yesterday morning. They took a lot of blood tests and I went through several examinations. They also took an X-ray of my lungs and an ultrasound of my stomach. Everything looked fine there, so at least my organs are in good shape (amazingly enough). My spleen was bigger than it should be, but that's the way it is when you have leukemia.

Then this morning I had to be anesthetized so that the doctors could take a bone marrow biopsy and get some spinal fluid. (I had to lie flat for two hours after it was over.) I'm not sure if I'm supposed to get the results today or tomorrow though. They were going to take a long look at the marrow before planning our next move.

My marrow isn't in good shape—we all know that. The question is, has there been any improvement? Because about a third of my blood is made up of blasts right now, we also know that there are some cancer cells in my marrow, so we're trying to figure out if Vidaza will help. It's the next steps that I'm interested in, but I also understand that they're not going to provide a definitive answer now either.

Wednesday, September 9, 2009

I
'm back home. My bone marrow has improved a little. Not many AML cells are left, but now I've got myelodysplastic cells instead. They're less aggressive, but I don't think the overall percentage has really decreased at all—the cells have just changed. On the other hand, I do have a few more healthy cells now. I'm going to keep taking the Vidaza. I'll probably be on it for quite a while longer. The doctor said I might need to keep taking it for a whole year.

I don't know what I think about the next steps. I want to get well, but I don't have the strength to sit here like this for twelve more months. I'd rather get well right away, of course, but it doesn't work that way. I don't even know if I'll ever be well again. It looks like I have a tough time ahead of me.

But my god, I'm so glad things have improved! I just have mixed feelings about the future. There's so much I still want to do.

I want to live normally again. I'm struggling with depression, and I don't know exactly how to motivate myself and hang in there.

Tuesday, September 15, 2009

T
hings aren't getting any better. I sort of thought I'd gotten rid of the fever, but it just refuses to go away; it comes back every other day or so now, and no one knows what's causing it. But anyway, after I got back from Trondheim, I thought I would try getting into better shape. The Vidaza is doing its job and keeping me from catching anything new, but it doesn't do any good if I have to just lie around here at home. So I thought I'd try to go on daily walks. But of course it wasn't that simple, and on Saturday I got this headache—which is literally the worst headache ever. I can't sleep very well because of it (or I guess now I should say because of
them
), and every time I wake up, I can barely manage to move my head it hurts so much. None of the painkillers do any good either. It's even hard for me to stand up. I guess it's a little bit better today, and hopefully that will continue. This is all because of the spinal chemo.

On another note: You shouldn't take what I said about “one year” too literally. Nobody has given me a sell-by date, as some people thought. It was only a way of saying that maybe I'll be someone who needs to be on the drug for a long time—and that sometimes those
people need to take it for up to a year. The malignant cells could still come back and ruin everything, or the Vidaza could lose some or all of its effectiveness in knocking out the cancer cells. The last time I checked, I was supposed to have two to three cycles, but they don't want to give it to me if it's not working, because it makes me so sick.

If I don't see any improvement soon, it will be hard to keep going.

Sunday, September 20, 2009

I
've been sick ever since my last post. My energy is at a low point and the pain is wreaking havoc. I haven't been up to seeing any visitors.

I spend my days lying in bed and on the sofa. That's all I can handle. I have a fever almost every night now and no one knows why. It doesn't seem to be going away; it's hopeless.

Last weekend when I thought I was starting to get a little bit better, I planned a small “vacation” in Trondheim. The Cancer Society has an apartment they lend out, and I thought that maybe I could borrow it for the whole fall vacation week. By then the Trondheim culture festival (aka “The Week”) will have started in Trondheim, and there are a ton of concerts to see. So yeah, I ordered three concert tickets and reserved the apartment. But it's only two weeks away now, and I'm really worried that it just won't work out. With the shape I'm in now, it's just not realistic.

I just wanted to take a break from all the misery and somehow enjoy myself a little in Trondheim. Go to the shops, cafes, and concerts, and just relax. We'll see what happens.

My appetite is totally gone, too. I eat just two meals a day, and that's nowhere near enough. After all, I don't want to totally waste away. So if anyone can suggest something simple and easy to eat, I would be really grateful.

Tuesday, September 22, 2009

W
hen I got up today, I was just as worn out and exhausted as ever (and didn't show many signs of improving, either). But I had to do something, I thought. I can't just wither away in here on the sofa. After all, I'd decided to exercise more to try to up build my strength. So even though I was weak and tired, I got myself dressed and went outside. I walked up the neighborhood hill and then back down again, and after that I walked a little behind the house, in the forest. When I got home, I was completely exhausted—but I was smiling anyway, because I'd done it.

This wouldn't be exercise for you healthy people, but for me it is, and it really helps. I felt so much better afterward. I took a bath and fixed myself up and rested. I haven't put on nice clothes and makeup in about a month. It felt good. I felt more upbeat. Then later on, Ida came to visit, and we chatted and ate raspberries. It's been a good day. Finally.

Regine's entry generated 232 responses, in which readers expressed their happiness about her progress. Here's a small selection:

So incredibly good to hear, Regine! That made me so happy! ☺ Stop by your blog about five times a day, and have been a regular reader for the past six months. Your writing is so inspirational!

—
Oda

I'm so proud of you that I don't even know what to say!!!! SO great that you managed to be proactive about your happiness and wellbeing—happiness can truly be found in the little things, and after a while you see that those so-called little things are actually the biggest things of all, because the simplest pleasures are the best. ♥ I actually
got dizzy just from reading this—I'm so happy for you, and so incredibly proud of you!