Regine's Book (16 page)

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 there'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!

Thursday, May 7, 2009

T
he 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…

Friday, May 8, 2009

O
ne 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!

D
ear 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.

Saturday, May 9, 2009

T
he 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.

Sunday, May 10, 2009

A
fter three and a half hours in the car, I'm finally in Trondheim, at St. Olav's hospital (yet again). Thankfully, nothing will happen until early tomorrow morning. But then it will be full-speed ahead. First a bone marrow test, and then after that the chemo cycle starts. It will be interesting to see how many cancer cells have taken up residence in my bone marrow now, but the chemo cycle will start no matter what the results are. The cycle will last five days. During those five days, I'm counting on being totally knocked out by the chemo, as usual. The days afterward will be worse. Then there will probably be another bout of blood poisoning in store for me, which is a truly awful thought. It's a good thing that we now know a little more about how my body reacts, so the right antibiotics are probably already on hand. The color of the chemo drugs I'll get are white and blue. I've had the same combination before, and it worked. I hope it does now, too. Why shouldn't it? We just have to wait and see. After having had the blue chemo, I've developed a total distaste for all kinds of things that are blue. Even blue slushies make me want to vomit now.

Monday, May 11, 2009

S
ome of you have probably heard about Espen Steen. In January 2007 he found out that he had intestinal cancer. He started chemo
and radiation therapy and went through several operations. Later he learned that the cancer had spread to his liver. He continued with the chemotherapy treatments, but the results were bad. Several operations later, he was told that the cancer had also spread to his lungs. At that point there was nothing more that the doctors could do for Espen Steen. He was advised that his cancer was incurable.

Epsen did not want to give up so easily. After researching several alternative clinics, he found Dr. Burzynski, based in Houston, Texas. That clinic had had good results treating the kind of cancer Espen has. But the treatment costs money, and Espen needed financial assistance. The treatment is available here in Norway, too, but it's not used to treat Espen's specific type of cancer. Therefore, the treatment isn't being offered to him here. Instead, he needs to travel all the way to the US and then pay huge medical bills.