Regine's Book (20 page)

As you know, I think a lot about you, and my whole family is following your progress.

And although I've said it before: A big happy birthday, especially to you, but also to your mom, dad, and little sister—and the other people closest to you.

I'm so incredibly happy for you.

—
Hugs from Hestiaverden

You're the most beautiful, the prettiest, the loveliest, the strongest person I know! Again, happy birthday, my dear Regine! You make the world a better place!

—
Sofsen

Regine, I smile a little every time I visit your blog, and I also get sad and upset that cancer is allowed to exist. But Regine, because of you, and your courage, I don't despair for long. Because I know you'll win this fight, Regine! No one can measure up to the strength you've
shown so far. I wish you an incredibly happy birthday today, and hope you have a truly fabulous day!

You deserve it. And much continued happiness, darling girl.

You're wonderful!

—
Hug from Johanne, fifteen years old

A big happy birthday! ☺

You've inspired me! I've registered as a bone marrow donor, since I was a blood donor before.

I went to St. Olav's on Thursday to give blood, and while I was there I gave bone marrow samples, too—they'll be tested to determine my tissue type.

I hope I can help someone like you!

—
Olav

Hi there!!!

A big belated happy birthday!!!! Wish you all the best!!!! I often think about you and peek at your blog…You're incredibly strong (and I think of your loved ones too). You're all so impressive…Say hello to your parents for me…Even if we didn't get to spend a lot of time together, I really valued the contact we had in Oslo…I miss SK…and I'm happy that YOU are hanging in there and getting a chance to experience more of what you want!!

—
Warm hug from AM

Monday, June 8, 2009

T
hank you so much for all the birthday wishes! They made me so happy. I've never had so many congratulations before! I'm sorry
if I missed any questions in the entries below, but there are so many comments! So if you didn't get an answer, just go ahead and ask again.

So, about my birthday, first of all, I celebrated with my closest family. We ate food, had some cake, and really enjoyed ourselves. I got a ton of great presents (and money, too)!

Later on, I celebrated with my best friends—and that was just totally unbelievable. It's the best birthday I've ever had. Just one thing was missing: my health. It was an unforgettable evening. First we went out to Peppe's for pizza and got a private room so that I didn't have to be surrounded by too many people. And after that we went to the bowling alley—it was so much fun, even though I came in fourth place (out of six). After the game we went to my place, and that's when the party really got going. Good drinks, good company, a camera, and sentimental ’90s music turned out to be a perfect combination. We played all kinds of CDs and ended up dancing and singing all night long. I don't think the night could have been any better.

Thank you so much, everyone, for all the gifts and birthday wishes.

Tuesday, June 9, 2009

I
'm traveling to Trondheim again tonight, and on Wednesday morning I'll have another bone marrow biopsy. The fun is over for now, and it's time to get back to reality. We'll get a lot of questions answered, but we'll also have to make a lot of new decisions about how to proceed. It makes me really uneasy when the doctors don't even know what they'll try next. Maybe another cycle is in the cards to get me in complete remission, but we won't know anything about anything until we get the test results back.

And what happens after that? Will I get donated lymphocytes?
²
Will they try giving me Vidaza
³
again? Will I get a new transplant, and if so, when, and how? How many of the decisions will be up to me, and how tough will the choices be?

The fact that the future is so uncertain wears me out emotionally even if I hardly ever show it. Yesterday it occurred to me that no one has asked me how I'm actually doing. Maybe they think I don't want to be asked. Maybe it's also because I seem so happy and satisfied now. And who knows: Maybe I would just have told them that I was doing fine.

Don't misunderstand me. I'm happy and I
am
fine, but I'm also struggling psychologically. I'm always trying to get rid of dark thoughts, and pushing them away. I'm pretty good at it sometimes, but they're always there; even if no one else can see them, they're still there. When I ignore them, they just accrue into a huge ball of frustration and terror. And eventually that ball will just explode, and everything will come out.

Yesterday I went to a café with Anne Marthe, and afterward we went for a walk around the city. It was really nice, but I still couldn't keep my mind from reeling. I was thinking that I should do things like this more often. I should be as free as everyone else, and I should be able to do what I want all the time. But I can't. If my transplant had been successful, I would have been cured by now. I would have been able to start my new life now. But instead I have to live with this uncertainty again, and start a risky treatment. It also doesn't help that a certain doctor at Riksen told me my cancer is incurable. I think about that every day. Is there anyone out there who actually thinks I'll get well again?

Thursday, June 11, 2009

I
wish all news was good news, but that's not the way it is. On Wednesday I had a bone marrow biopsy. The results showed that there are still way too many cancer cells left in my bone marrow. The chemo hasn't had the effect that everyone was hoping for. There's about 10 to 15 percent left, so now things look really bad. It became a day full of drama for my family and me. (It didn't help that the doctor cried, either.) It seems like there's no hope. My bone marrow doesn't produce enough for me to start a new high-dose cycle. The doctors say it would kill me. So I'm going to start a low-dose of chemo pills on Monday. The doctors have gotten rid of the cancer cells this way twice before. That's saying something, but now the chances are really small. Still, it could keep things under control so the bone marrow might be able to get a bit stronger and enable me to start a high-dose cycle again.

They said that we shouldn't give up hope, but I'm not sure that I have much hope left. I've hoped and hoped, believed and believed. I've tried to be so positive the whole time, but now I don't know if I can do it anymore. Nothing seems to be working, and I'm getting desperate. I'm so scared. There's nothing I can do. It's so awful for me to see that I'm getting worse and worse without anything working. I don't want to die yet, but right now things look really bad.

Many readers were powerfully affected by Regine's post, and 637 people wrote comments. Here's a small selection followed by Regine's response:

You're allowed to give up hope once in a while; there's nothing wrong with that. Sometimes things get to be too much. Don't feel guilty. It's totally normal! Everyone needs a break sometimes. Maybe it's hard to
take a break from your thoughts, but sometimes I get the impression that you feel you're responsible for keeping yourself up, which you are in a way, but you're also allowed to wallow for a bit and take a break from being so strong. It's important to be positive, but sometimes it gets to be too much—and that's when you're allowed to sit down and cry and rest. At times like that, you don't have to get up again until you're ready. Hope will wait until you're ready for it again.

—
Anonymous

That's sad news, Regine. And I understand why you're down in the dumps; everything looks bleak right now. But you have to try to find your strength again. The strength that we all admire so much. Find it and FIGHT! You won't die yet, darn it! You have many years left to live. I visit your blog several times a day, and I'm rooting for you with all my heart.

I'm looking forward to the entry about you being totally cured. Because that entry WILL come. Anything else would be totally impossible. ☺

—
A neighbor who's rooting for you

Dear Regine,

I can't claim to know how you're feeling, because nobody looking in from the outside could ever know that. But it's heartbreaking and totally awful—and I think it's that a lot of people who comment here on your blog forget that you're actually only eighteen years old! Of course you're scared and sad! Who wouldn't be?

I walked by St. Olav yesterday and wanted to go in, sit by your side, give you a big hug, and just be there for you and show my support.

I also must say that I often think of your parents and the desperate situation they're in. To see your children sick and scared is a
horrible feeling, and you want with all your heart to trade places with them. I'm a mother and I know that a parent would happily do anything for her child. So, my dear Regine, is there anything we can do for you? Anything at all? There are a lot of us who think about you and your family and pray that you'll get well. Find the strength to keep fighting. We're hoping that faith really can move mountains.

—
Biiiiiiggggg hug from Sarah

Scream, be angry, be fed up, cry—get it out and don't bottle it up. It's brutal to always have to fight against fear and despair. It's not always about being strong. So keep taking baby steps and one day, maybe way down the road, you'll be well again. Things can still get better, Regine. They have to.

—
LH

Dear Regine,

No, no, and NO! ☹

This isn't what I wanted to hear.

I feel SO sorry for what you're going through, and would gladly switch places with you, because I've already been alive for 30 years more than you, BUT this HAS TO go well in the end.

HANG IN THERE as much as possible, and we'll do what we can. You're in my thoughts every day (even if I don't post comments that often).

I hope you have good friends you can talk to; in my own experience, things are better when you have someone who can listen to you and just be there for YOU.

—
BIIIGGGG warm, encouraging get-well hug from Olaf
☺

No. NO. This is very hard to hear. I feel tears welling up in my eyes, because I can hear how scared you are in what you write. It's heartbreaking.

But there's still hope—keep that in mind.

I really want to wrap my arms around you, but I know you're lucky and already have your loved ones with you. Say hello to your mom, dad, and sister.

—
Warm hug from Else

Thank you so much for all the comments! I read them, but unfortunately I can't reply to all of them. I hope you understand that. But I appreciate them all so much.

A lot of people ask me if I have someone to talk to. I don't get anything out of talking to psychologists. I talked to the hospital pastor twice and that was really helpful. But I'm totally fine with sorting things out on my own.

I'm happy just to be out with friends and to do other things like that. Simple things. That's enough for me.

A lot of people asked me if there's anything they can do for me. I appreciate that, but it's more than enough that you're writing supportive messages on this blog. ☺

—
Regine

Saturday, June 13, 2009

T
he days after the bad news have gone well, in spite of everything. The period right after you get painful news is the worst I think. But after a while, you have to just shove it all aside—all the pain and sorrow. There's no other choice. If you went around constantly thinking about the pain, you'd go crazy. It works best for me to suppress
those painful thoughts for as long as I can. Then, later on, if you just break down and can't stop the negative thoughts from swirling around, so be it. That's what works for me, anyway.

Since I'm in such good shape, there's nothing stopping me from doing the things I enjoy—at least for now. I went shopping the other day and bought myself a lot of clothes (and a short-lived feeling of happiness). Actually, I wonder why I still buy clothes, because a lot of times I feel like I don't use them anyway!! I've also spent my evenings with the people who care about me. Watched movies. Yesterday I painted, and today I took some photos. I was happy with the results, but my painting isn't done yet. When it comes to painting, I'm no artistic genius.

Monday, June 15, 2009

T
oday my blood values were about the same as they were on Wednesday. So they're stable. My immune system has gotten better, and luckily my blood condition hasn't gotten much worse. It's hard to know where to go from here. The doctors are really wracking their brains, and they have endless discussions about next steps. What can I tolerate? What will work best? They're working on a compromise, but that isn't always easy. I need something that will be effective, but it also needs to be something that my body can tolerate in its current condition.

They changed the plan a bit after my immune system improved. There was no pill cycle today, but tomorrow I'm going to start taking a chemo drug called Cytosar instead. I'll get it intravenously for four days. After meeting with the doctor today, I started to feel a little more upbeat. It sounds like this has a better chance of working. We know the Cytosar will kill the cancer cells, but we don't know how
many; no matter what, though, it'll have some kind of effect (I think). It sounds like it's much more effective than the pill cycle, but it's hard to know for sure.