Thank 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.
The key to the gate
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 Vidaza3 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?
Some bad news
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
The voice from the tower
Saturday, June 13, 2009
The 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.
Made of glass
Monday, June 15, 2009
Today 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.
In any case, the Cytosar worked well for me in the fall, but I received it in large doses. Hopefully it'll work well now, too.
Life is so fragile. You go around thinking you'll live forever. Unfortunately, it's not really like that. Everyone has a hard time coming to terms with death. I can't think of anyone who is comfortable with dying. But what would be best: to live forever, or to die just once? I don't think it would be so great to live forever. Obviously it's not a practical question—just a little thought experiment. Death is something we all have to face one time or another, young or old. We all have to go through the same process. I wonder if people are just as scared of death when they're old? Or do people eventually just realize they've lived their lives and that's it? No matter what, I think it's more frightening to face death when you're young. But whatever the case, I feel like I've experienced a lot so far, and that's better than being old and not having gotten anything out of your existence. Imagine looking back on your life and thinking, What have I actually accomplished? That must be an awful feeling. I really would have liked to accomplish more, and I know I would have if I'd gotten well. I would have had a ton of new experiences, and made a real difference in the world. Well, we just have to keep our fingers crossed—even if a complete recovery seems so out of reach.
Quick status update
Friday, June 19, 2009
Hey there! Many of you get a little worried when I don't post anything for a while—so just wanted to let you all know that I'm safe and sound. The chemo cycle started on Monday and ended today. I've been pretty exhausted these past few days. I've also developed a mild fever. My body aches and my stomach hurts, too. I'm pretty sure the chemo is the reason why. My blood values aren't too bad—or I should say that they're good for me, but for others they would be catastrophic. My immune system has improved, so that was a pleasant surprise at least. I'm assuming the values will start dropping again soon because of the chemo. I had to be at the hospital for five hours today. First blood tests, then medication for the nausea, and then chemo. After that I had to have two bags of blood. At the end they did an ultrasound of my heart to make sure everything was okay. I was totally worn out after all that, and had to take it easy for the rest of the day.
On Thursday, two cool girls from the paper came over. They're doing a profile of me for the weekend edition of Dagbladet, which comes out next Friday, June 26. The reason I agreed to do it was that it sounded like it was actually going to be a good interview. The questions were really personal, and I felt like I was able to actually communicate a bit more than I normally can about who I am and how I think. That was the objective anyway. I'm looking forward to seeing the result. It was pretty different from the other interviews, which just focused on my blog and my disease. I think it'll turn out really well.
I've started making plans for the Quart festival. I really hope I can go! I can't say for sure if I'll be able to or not; it depends on how the treatment goes and how I'm feeling. But I hope that we can come up with a solution so that I can go. The festival manager promised me two tickets and a hotel room. How great is that!? If I can go, my best friend, Eli Ann, will come with me. I'm worried it won't work out, but I'm still looking forward to it, in spite of my doubts. Imagine seeing Slash live! Not to mention Marilyn Manson.
I'm struggling to answer all the mail that I've gotten, but rest assured that I'm doing all I can!
A toast to Quart (and the wig)
Wednesday, June 24, 2009
I hope everyone had a lovely St. Hans celebration!4 I know I did!
A few days ago I came down with a bad case of the stomach flu. Why can't people just wash their hands after they use the bathroom? How gross! It resulted in another trip to the hospital, but now I'm well again.
Today has been great. I had the house to myself and had a visit from the world's loveliest person, Eli Ann. We barbecued and had an amazing time together. Sausages are so underrated. We popped open some champagne (trust me—it was called for), and we toasted to the Quart festival next week, and to me wearing a wig. Yes, you read that correctly. Actually, I hate wigs, but today I missed having hair so badly that I decided to put on one of my two wigs. I think it worked well!
The tickets and the hotel for Quart are pretty much in order and they're both being paid for by Dagbladet. (Thank you so much!) I hope I manage to stay healthy, and that my treatment doesn't get in the way. I'm counting on everything working out!
What do you think of the wig? Does it look real? It's made of real hair. I wonder whose hair it used to be. Have you had a good day?
Glorious summer
Friday, June 26, 2009
I barbecued again today—this time with Karina and Silje. We made the world's best meal, complete with marinated chicken filets, chips,
béarnaise sauce, and salad. It was so good. We tried champagne this time, too but it didn't work out as well, so we had some sodas instead. After eating we went inside to watch Hostage. (Ack! It's super intense!) Then we had strawberries and ice cream for dessert. A wonderful day!
Do you think wearing a wig violates a kind of taboo? I somehow feel like it does, but I'm not sure why. I wore a wig to the hospital today and finally avoided all the stares. That felt good, so I've decided to give the wig a second chance. It actually looks pretty good. And I feel much better when I have it on.
I've been thinking a lot about people who permanently lose their hair. It's probably awful not to have hair. Can people actually get used to it? I haven't. Society today is obsessed with looks. It's really hard to find a good wig. I probably tried on twenty of them when I was looking. None of them were like my real hair, and most of the styles were ugly. Totally old lady. They should have a better selection. The word wig leaves a bad taste in my mouth. Why can't they just call it…I don't know…but something else.
Would you wear a wig if you lost your hair?
Which wig do you like better?
Regine's story continued to move more and more people. The members of the art rock band Ulver—who had recently conquered their collective stage fright and played live for the first time in sixteen years—were among them. On their home page, under the title “We did it. Faced the music. And you,” they wrote:
Regine Stokke, a brave girl sentenced with MDS/AML. Our burdens are nil compared to yours. We are glad you did make it to the concert and that we got to say hello to you. It is truly astounding how you manage to smile in the face of such adversity. Forgive us our pathetic coquetry with death. We don't know what else to say.5
Some people who followed Regine's blog saw Ulver's comment, and others read Regine's interview in Dagbladet , but most of the 466 comments posted in response to Regine's June 26 entry answered the question of which wig she should wear to the Quart Festival. Here's a small selection:
Regine's Book Page 14