—Regine
Answer from the US
Tuesday, May 5, 2009
The doctor from Kristiansund called and said that she'd received an answer from the US. My mom, my dad, and I eventually went down to the hospital, filled with anticipation. We'd already been waiting about two weeks for an answer. The US doctor wrote that he agreed with many of the Riksen hospital's conclusions and felt that my prognosis was bad—that I didn't have a good chance—but that he was willing to treat me if I was in good condition and didn't show any specific signs of illness. The treatment would then involve some experimental chemotherapy, which could lead to remission (a state in which my bone marrow would consist of less than 5 percent cancer cells). And then after that, if the disease did go into remission, he would have to give me a new bone marrow transplant. If it was still an option for us, I could go see them so that they could assess my health and cells with their own eyes.
The answer was what we expected. It's clear at this point that I have a disease with a pretty bad prognosis—we definitely realize that. But if the doctors are willing to try again, why shouldn't we take that chance? Because even though the chances are slim, it still might work.
Anyway, now we're struggling with our final decision. Should we continue the treatment here, or travel to the US?
We're going to Trondheim on Thursday to talk to the doctors, and thought we could discuss it then. It's important that all the experts give us their viewpoints. We'll go where the treatment is best. If we find out that it's better to continue the treatment here, we'll stay here. Everything is up in the air right now, but if the US becomes a possibility, we need to head over there pretty soon. This particular hospital is located in Texas, and it's one of the world's best for cancer treatment.
We're also waiting for an answer from a hospital in England and another one in Germany. It will be interesting to compare the responses.
Luckily I'm starting to feel better now. I haven't had a fever at all today, and that's great. I also got to participate in my sister's confirmation, which made me really happy. It was great. A very successful day. With a little help from the home nurse, I could be back home for most of the weekend.
Answers to questions—part one
Thursday, May 7, 2009
Early tomorrow I'm traveling to Trondheim, where we'll have a talk with the doctors. We'll be discussing the previously mentioned hospital in the US, along with some other things as well. The medicine I just received doesn't appear to be working, and I'm starting to get really stressed. If something is going to happen, it has to happen soon. When I get back, I'll update you on what's going on. Here are answers to some of your questions.
Ane asks:
Question: Have you considered writing a book (when you get well) about everything that's happening now?
Answer: Yes, I'd be very interested in (and excited about) a book project later on.
Etthjertetoindivider asks:
Question: Have you written a will?
Answer: No.
Question: Are you scared of dying?
Answer: Yes.
Question: If yes, why are you scared of dying?
Answer: Because I have so much more I want to accomplish here in life. I want to live more, see more, experience more. Isn't that natural?
Question: Do you think I'll get to meet you one day?
Answer: Never say never.
Question: If yes, would you give me a hug?
Answer: Since I'm totally paranoid about bacteria and stuff like that, most likely you would not get a hug. ☺
Question: What do you think about what NN14 said about you several blog posts ago, when he tried to make himself look like a great guy?
Answer: I thought they were incredibly childish entries. There are more important things in my life right now than having the most read blog in Norway.
Question: What do you think about him?
Answer: I don't know him personally, so I probably shouldn't say too much about what I think, but he's not exactly my type, is one way to put it.
Question: Which blogs do you read daily?
Answer: Maren-Sofie's, Anne Marie's, and Sofie Frøysaa's.15
Question: Are you going back to school?
Answer: If I get well, I would probably go back to school.
Question: What kind of work do you want to do?
Answer: Psychology, photography, or journalism.
Martine asks:
Question: What do you think happens after death?
Answer: I think everything goes black, like in a kind of eternal sleep and then that's it—you just don't exist anymore.
Question: Are you close to your family?
Answer: Yes.
Question: What's your best memory from childhood?
Answer: I have so many good memories from childhood. If I had to choose one special memory it would have to be when Malin and I created an imaginary friend. He was a polar bear who needed food every day. We visited him every day to cook food for him.
Question: The worst?
Answer: When I was given a hard time because of how I looked.
Question: Who would you most like to be stranded with on a desert island?
Answer: All of my best friends.
Question: Which person/people mean the most for you?
Answer: My family, my friends, and my cat.
Oda asks this question about giving blood:
Question: Which precautions do you have to take with regards to alcohol consumption and smoking? (I don't smoke myself, but maybe others are wondering about this?) And what about kissing/sex, etc.? Are there other things you are not allowed to do? Could there be consequences if you break any of those rules?
Answer: I don't think there are any special precautions. The most important thing is to be healthy and not to have any contagious diseases. A physical exam will be done to see if the donor meets the requirements. It's very important not to break the rules; it can have consequences for the one who gets the blood.
Marisve asks:
Question: Which experience would you like to relive?
Answer: I wouldn't mind reliving all the concerts and festivals I've been to with my friends, and more generally I'd love to just go back and relive all of the great times me and my friends have had together. I wouldn't mind going on all of our family vacations again either.
Silje asks:
Question: Where do you find inspiration? Where do you get the courage for all this?
Answer: I get inspiration from music, from nature, and from myself—from my own thoughts and feelings.
Ms. North asks:
Question: Do you have a favorite photographer?
Answer: I really like Peter Beste's photographs. I also like Matt Mahurin.
Anonymous asks:
Question: I have a few different questions about your disease. When you got chemo, you lost your hair. Did it fall out gradually? Do you lose absolutely all the hair on your body? Like your eyebrows and eyelashes, and under your arms and legs?
Answer: It took a little while before everything fell off. Yes, it fell out gradually. At first I only lost the hair on my head, but after a while I also lost my eyebrows and eyelashes. It took about four months before absolutely all of it fell out.
Question: How are you affected by your disease on a day-to-day basis? Do you really notice it? Are you in pain or are you sick a lot? Or do you just have a kind of general sense of the disease? A general anxiety?
Answer: Of course I notice it! Every day. I can't go to school. I can't do things that other people take for granted. I have a weak immune system, which means I have to watch out for infection, which means I can't be in places with a lot of people. I'm not in a lot of pain, but I'm really weak, and things that wouldn't even make a normal person tired make me exhausted.
Question: Do you think it's okay for a seventeen-year-old to get a “death sentence” from her doctors?
Answer: Of course it's not okay, but if th
ere's nothing they can do, then there's nothing they can do. I feel like the doctors should do everything they can, and after that it should be up to the patient if he or she wants to try alternative treatments.
Elizabeth asks:
Question: What has been the best thing, if anything, about having this disease?
Answer: I would say that the best thing is that it makes you put a greater value on life; it makes you enjoy every day more than you did before.
Question: What are you most scared of?
Answer: I'm most scared of having to go through a hellish decline, with lots of pain and suffering. And I'm also scared of death, of course.
Question: What was the first thing that occurred to you when you found out that the doctors had given up on you?
Answer: Isn't that obvious? Of course I thought that I would die and that there wasn't any hope, and that it was really over.
Question: What do you think of all the attention you're getting (both positive and negative)?
Answer: For the most part the attention has been positive. It's helped me persevere and keep a positive outlook. The support I've gotten has been incredibly important. Some people give me negative comments, but there are people who are simply dumb and ignorant and who maybe just lack the capacity to be compassionate (or care for anyone at all).
Question: Are you really as strong as you seem to be? Where do you get courage?
Answer: I have highs and lows, and sometimes I'm weaker than at other times. You learn to be strong in this type of situation. You don't have a choice.
Beate asks:
Question: Have you played any sports? If so, which ones?
Answer: I've danced, boxed, and played soccer.
Question: Favorite band/artist?
Answer: Ulver, Enslaved, and Wardruna.
Caroline asks:
Question: What do you usually do at the hospital when you aren't getting treatment? Do you read a lot and stuff like that?
Answer: When you aren't getting treatment, you're usually not at the hospital. ☺ But maybe you're thinking about when I am getting treatment? Then I usually just watch TV to make the time pass. Other than that, there's not very much to do.
Ine Amalie asks:
Question: What was your first reaction when they told you about your diagnosis?
Answer: I got totally scared, and was sure that it was the end. My head was spinning with thoughts about treatment, the prognosis, etc.
Question: What's it like to have no hair (I think it suits you not to have it, but I'm wondering what you think/feel about it)?
Answer: It's incredibly unpleasant. I feel naked. I liked having my hair so that I could hide behind it sometimes. I truly miss arranging my hair, brushing it, washing it…
Question: When you get well, do you have any plans about what you'll do?
Answer: I'm very careful about having plans and dreaming, even if I do let my mind wander sometimes. Right now I just want to live, do the things I want to, and spend quality time with the people I like. I also want to contribute something to the world. I want to work toward improving the lives of hospital patients, and I also want to help cancer patients who are struggling. And of course I want to travel around the world and take photos.
The rest will come later!
Get rich or die trying
Thursday, May 7, 2009
The medicine I've been on hasn't been very effective. It can take a long time for it to work, and under normal circumstances I'd need to have several cycles, but things are at the point where we just don't have time for that. The disease keeps advancing, and now it's totally out of control. The blood sample the doctor looked at was full of cancer cells.
We found out that the best thing to do is to go ahead with a high-dose cycle. We have no idea if it will work, or if I can tolerate the treatment, but we think it's best to try. It's just not an option for me to go home to die. We're trying anything that might work. The new plan is for me to have two chemo cycles to get me into remission. After that they'll give me a new transplant—if everything goes well. I really hope the chemo gets rid of these cancer cells so that I can have the new transplant. We're starting on Monday, and things are getting urgent. The doctors in Trondheim didn't think there was an advantage to going all the way to the US, since they're able to offer the same treatment here.
It's not going to be easy to start on such a tough treatment again, but I know it needs to happen.
I wish there was a miracle cure, but unfortunately there isn't.
I hope that at some point I'll be in as good a mood as I was in the picture below. But that seems unlikely right now…
Guest post
Friday, May 8, 2009
One of my readers really wanted me to open the blog up to a guest blogger. And who better than Sofie Frøysaa? She wanted to write a post for the people who've left me negative comments. Personally, I really like what she's written, and I'm thrilled that she supports me as much as she does. Luckily most of my readers are positive, intelligent, and kind people, but when you have a blog that's become this popular, more and more negative comments come in.
Sofie Frøysaa—you mean so much to me. You're the best!
WAKE UP!
Dear readers:
My name is Sofie Frøysaa, and I, like many of you, have followed this blog since Regine started it last November (n.b.: I take full responsibility for this entry).
Most of you contribute with motivational, supportive comments. Most of you show compassion and wish Regine well—as you would expect, right? However, there are some idiots out there who take out their own anger and frustration on Regine. This entry is for them…
Not only am I a regular reader and admirer of Regine, but I'm also her friend. That's why I get fed up and angry (not to mention sad) when people unnecessarily drain her energy by tossing crap in her comment box.
It's no secret that NN produced the most pathetic blog post ever, entitled “Drama in Paradise.” This post of his focused on the famous top ten list at www.blogg.no. In it, he asked his readers if they thought Regine deserves to be on this charming list of top bloggers. (It should also be mentioned that he lets very few of the comments sent to him appear on his blog. That's why it's just the icing on the cake that he now dishes out such nasty comments.)
It's clear that the most important thing for Regine right now is the way that she's connected to so many people. And of course that's the whole point of the blog. All PR is good PR or something like that. (Oy, I forgot for a second that this entry is addressed to people who probably don't understand irony. Sorry.) Another asshole made an idiot out of himself in the comment box just yesterday. Whenever that guy opens his mouth, or turns on his computer, he's actively reducing the average social intelligence among Norway's population. He did say sorry though. (So in other words: There is hope! Otherwise, I never would have written this entry.)
Today I came across yet another impressive comment. A girl writes, “I feel like you seem so sour and fed up when you answer the questions.” So that's strange, is it? My dear: How would you have reacted if you'd gotten the same news as Regine? Would you have shrugged your shoulders and smiled? I'm pretty sure you don't understand the seriousness of all this. In a completely brutal and unfair way, this is a matter of life and death. I lost my mobile phone last week (flying home from seeing Regine, in fact). I got bitter and fed up just about that. It's in those types of meaningless disappointments that people get “sour and fed up.” That you even chose those words is completely amazing. Do you think people get SOUR when they live with cancer? Have you heard of perspective before? No? That's what I thought.
And when it comes to the questions that Regine gets, they're not all written by Shakespeare, if you know what I mean. To pull out just a few recent examples: “Are you scared of dying?” “Do you think it's okay for someone who's seventeen years old to get a death sentence from her doctors?” “What will you do if you hear that there's no hope for you, and that you'll die
in a month?” Do you just want to rub it in? Why is it that so many people focus on death? The best one was probably: “Rest in peace.” Don't you think that Regine is totally aware that the worst could actually happen here? Why not encourage her to think positively? Why not just take a second to point out that as long as there's life, there's hope. She'll get through this!
If there's one person who deserves a place here on earth, then it's Regine. If there's one person we can learn from, it's Regine. If there's one person we need to cheer on—yup, it's Regine. She's “only” seventeen years old, but she's dived deeper into life than most people. She's seen life at its worst, but she still holds onto her courage. She teaches us to value life. She teaches us to see life from another perspective. She shows us that life is a valuable gift. That we only get one life on this earth, and therefore we need to be the best people we can possibly be.
Regine is an exemplary human being. It is unacceptable—in fact it's downright shameful—for people to take their own frustrations out on her. Some people are probably, in an absurd and pathetic way, just jealous that they'll never accomplish what Regine has already accomplished at the age of seventeen.
When I was four years old, my mother taught me that if you don't have anything nice to say, then you shouldn't say anything at all. What I'd like to propose is that going forward we all live according to the Cardemom Town law,16 and focus on what really matters here in life.
If anyone has questions or angry comments in response to this post, then respond on my blog—not Regine's.
Risking it all
Saturday, May 9, 2009
The weekend was good, in spite of everything else that's going on. Before I start the treatment on Monday, I'm trying to enjoy myself as much as possible. Tonight I'm going to have a nice dinner with my family and enjoy my time with them. I spent a lot of time with Martin over the past few days, and that was—as always—amazing. I try to do things that help me to forget my illness, if only for a little while. The best thing that my friends can do for me is make me forget. But still, I'm dreading Monday more and more. It won't be easy to start that awful cycle, but it has to be done. I have nothing to lose, so I may as well give it all I've got. The doctors at Trondheim agreed that I should start a high-dose cycle. They're going to do everything they can to get me through it, but it will be tough. We all know it.
Regine's Book Page 11