Regine's Book (26 page)

—
Greetings from Ashild

“I wish someone other than me had gotten this cancer instead.” I think that's an awful thing to say actually…Weren't you the one who said you have to “accept your war”?

—
K

Yuck, I get totally pissed off by some of the comments you get. Of course you don't want other people to get cancer; every functional human being understands that you wrote that in a state of deep despair. I have no doubt that EVERYONE in your situation has the exact same thought at one point or another. To write as openly and
honestly as you do about your psychological and physical struggles shows how tough and bold you really are. It's so sad to read about your friends disappearing. Thank goodness for Eli! She really sounds like the world's best friend! Worth her weight in gold. It's when times are tough that you see who your true friends are. I hope that everyone who thinks they hate school reads this entry, and understands how lucky they really are. I'll cross every body part that's crossable for you, and I hope you soon get to hear some good news and have some good days.

—
Big hug from a neighbor who's cheering for you

Wishing that someone besides you had cancer is the same as a healthy person meeting a seriously ill cancer patient and thinking: I'm glad it's not me. They're two sides of the same coin. It's totally natural—and not brutal or grotesque at all. It's a thought that demonstrates the basic human instinct for survival. The fact that some people can't tolerate your honesty is something I hope you can dismiss and rise above. They would think the same thing if they were in your position, but they probably wouldn't be brave enough to tell others about it. I hope your condition is still okay and that the cycle is doing what it's supposed to do. In the meantime, I have some smoothies to recommend: Try one with bananas, a lot of frozen blueberries, and a lot of vanilla yogurt. Blueberries and vanilla is an unbeatable combination; it tastes incredible. ☺

—
Jorn

Thank you so much to all of you who made an effort to understand what I was saying! There are a lot of good and wise comments in here. I don't understand why people feel they absolutely have to provoke a debate with me. These are my thoughts and no one else's, and there's no need to sabotage them—especially if you have no idea what
I'm going through. These are thoughts that everyone has, but which hardly anyone says out loud. At least I'm honest. I'm tired of people expecting you to say, “Ahh, I'm so happy that this happened to me.” I just don't believe in the sunshine stories of people who say things like that. If you don't have anything better to do than bring me down even further, then you must not have anything worthwhile in your life. That's tragic. I also don't understand how this K can claim that I write a lot of controversial things. She's the one being controversial here, not me.

Lillebeth: I completed the Vidaza cycle today. ☺

—
Regine

I think very few people here understand what Regine has actually been through. Long-lasting cancer with relapses is a different animal entirely from your basic cancer case. First, cancer is not a single disease; there are at least 180 distinct types of cancers, most of which have subtypes and stages all their own. As such, cancer and cancer treatments range over a broad spectrum, which at the low end can involve only a small surgical incision (which may not even leave a scar) and minimal radiation treatment; those two simple, minor measures often allow for the patient to be healthy for the rest of his life. At the other end of the spectrum, however, patients are forced to actively fight against the cancer despite chronic ill health; they can feel their bodies being destroyed by the disease and worn down by the drugs and medicine, and they live in constant fear that the next doctor visit will be a death sentence.

Both descriptions are of “cancer,” but they aren't even close to being the same thing. How anyone can justify a cruel retort when Regine shares her thoughts, her pain, and her experiences, I just don't understand. The people criticizing Regine for her comment that “I wish it was someone other than me who was struck instead” should
just be happy that they aren't in a position to understand the long-term pain that serious cancer can involve. I've stood on the sidelines and seen what patients go through, but I can still honestly say “anyone but me”! Regine, you're an incredibly tough girl. I've read your blog for a while now, and I really hope you experience a change for the better soon! And more generally I just want to thank you for being so brave, and sharing your thoughts and experiences with us. Even if it's painful, even though it hurts, I'm really thankful for your giving so much of yourself to us. You've become the personification of what I'm fighting for, and your words inspire me whenever I grow tired or frustrated with my work.

—
The Researcher

Hi Regine! ☺ I've been following your blog for a long time, mostly because my sister (Sofsen) asked me to take a look a while back, and since then I've read it as much as I possibly can. I often think about you and what you have to go through, and I still can't manage to mentally put myself in most of the situations you wind up in. I think Beate put it best when he said, “People are crazy.” I think that hits the nail on the head. You really just have to keep writing. I don't see you as an “egotistical” person or as a strange person. I see you as a light in the dark. You bring hope to so many people. Christian suggested in the above that you should “think about all the people who have the same diagnosis that you do.” Yes, you should remember them.

Think of the hope you bring them, and think of all the strength that you give to them. They see how bravely you're tackling a situation that most people would see as hopeless. You're fighting; you're standing up to the disease. And damn it, you'll succeed in knocking the shit out of it, too. And when that day comes, think about all the people who currently have the same diagnosis as you. Think about how many people will get a new spark of inspiration, and a new shield.
You'll show them that, yes, recovery is actually possible. So Christian: I agree with you. Regine really should think about all the people with the same diagnosis as her. The courage you show, Regine, almost brings tears to my eyes. Keep fighting.

—
Matias, a big admirer

Hi Regine! I've been visiting your blog for a long time now but this is my first time commenting. I recently looked through a lot of the comments you've gotten, and it left a really bad taste in my mouth! Who are you to decide that what Regine feels and what she wants to discuss in her situation is wrong!? Who are you to define Regine as confrontational!?? Who are you to come in here and actually THINK that Regine is after fame and PR in the papers!!?? What the HELL(!!!!) is wrong with you?? What gives you the right to blog negatively about a person who is actually looking death in the eyes at such a young age?? Unfortunately, that's the way it is now: fame and glory and the number one spot on Blogg.no is what counts. What the HELL!!!?? Take a look in the mirror!!!! Get a clue! I won't even TRY to imagine myself in your position, Regine. I won't even try! I'm 31 and I have a beautiful five-year-old daughter. I'm so profoundly thankful for having gotten as far as I have today! And I appreciate every single day of my life! My mother died of cancer when I was fifteen, after sixteen(!!!) years of being afflicted. The doctors were beside themselves with amazement that she made it so long. I have a picture of her here as we speak, with a needle in her arm, smiling to the nurse who took the test. That's my mom. I was delivered by caesarian because of her health at the time. She promised herself she would see my sister and me get confirmed. Sixteen years! She made it. After my confirmation, she had achieved her goals and she died in the fall of the same year.

Sixteen years!! I still remember vividly how she lay under a comforter in the living room, sick, and with a high fever. I called a taxi to
Riksen myself (I was used to doing it after so many years of chemo). This time she knew she wouldn't be coming home again; she knew that it was the last time she'd see the place that she loved more than any place else on earth. She just knew it! Dad also probably knew it, although he didn't say anything to my sister or me. We thought it was just another trip to the hospital.

We're talking about willpower—the willpower that gave her sixteen extra years of life, and gave her some of her happiest moments on this earth. We're talking about going through chemo with a smile because she didn't want the people around her (who she loved more than anything) to get depressed! At the funeral, a good friend of hers said it best: Every year my mom went by this friend's house with an almond ring cake for Christmas. She even came by during her last year, with as big a smile as ever. “I managed it this year too…” she said.

The church was packed for her funeral. The taxi driver who used to take her to Riksen for every new cycle of chemo cried at the funeral, and his wife did too. I guess what I'm actually trying to say is…you're like her. You're a fighter. You see the silver lining in things that are too dark for most people to even think about! You have what it takes to survive, Regine. Mom had it, but unfortunately age and the disease got the upper hand in the end. You have a better starting point than Mamma. You still have a chance! I think it's so inspiring to see the expression on your face in your pictures. You look worn out but you still have hope. Treasure every day! Appreciate the small moments! (I know you do already; you've proved that, time and time again.) While many of us would have given up, you still go to festivals. Small moments, Regine. To the people who even THINK about coming to this blog to criticize you for what you write, all I have to say is: What's wrong with you!!?? You're like me: You grimace as soon as you get a pebble in your shoe!! What do you know about being deathly ill at her age?! Get a clue!!! Damn it!! I don't know anything about it. I don't try
either. I just know that you, Regine, you've got what it takes to survive. Use it! Your photos are fantastic! You see things in the world that other people just don't see. You capture a mood, and that's why your photos turn out so well! I'm still processing my impressions of some of the best ones. You have a talent that many photographers would envy. Use it. I'd like to write, “This will go well, Regine! Things go well for good girls. Be positive, and everything will be okay.” But I can't make that guarantee. All I can say is that I hope with all my heart that you'll stay with us—as a photographer, or doing something else that you really love to do. I hope to see your happy face in the future. You deserve a full and happy life! You're a hero for me, Regine. Just like my mom.

—
Oystein

Sunday, August 23, 2009

T
hings have actually gone pretty well for me this weekend. It didn't start out very promising, but luckily things quickly turned around.

On Saturday, Karina and Silje came to visit. It's been a while since I've seen them, so that was really nice! We're able to chat about everything and nothing, but most of all we talked about our fear of Siv Jensen—she absolutely shouldn't win the election and come to power. We also wound up talking about the universe as a whole: because if we think about it, we're actually meaningless little creatures on a meaningless little planet. You could go crazy if you think about the infinite spaces of the cosmos, and about all the other things that are beyond our understanding. Anyway, in other news, we made plans to get together again next Friday. We're going to order food and watch a movie, so that will be nice.

Today Eli visited again, and we carried out our tried-and-true ritual: cake baking, Mario Kart, and
True Blood
. This time we made a foam cake. It turned out great, but it was really sweet and rich, so we couldn't eat a lot of it. It's so fun to bake, and
True Blood
is getting really exciting.

There were a lot of people who asked about the recipe, so here it is.

Foam Cake

Instructions:

1. Put the gelatin in cold water to soak.
   
2. Beat the egg whites until they're stiff, and carefully mix in the sugar and vanilla sugar.
   
3. Squeeze the water out of the gelatin and stir the gelatin in the boiling water.
   
4. Pour in the egg whites and mix for fifteen minutes in mix master.
   
5. Afterward, pour the dough in the pan and set in refrigerator for about one hour.
   
6. Melt the cooking chocolate and shortening together and spread on cake when it has set.
   
7. Sprinkle the coconut over the frosting.
   
8. Put the cake in the refrigerator when done.
   

Also, someone asked what kind of Smoothie Eli and I made here the other day.

Smoothie:

It was so, so simple. (We used much less of everything when we made it, by the way.)

Friday, August 28, 2009

I
saw a news story on NRK today about how there are way too few young men acting as bone marrow donors. Of the 28,000 registered donors, only 2,300 are men under 36. Young men are the ones best suited to being a bone marrow donor, because you can always get the most cells from young men. They have a high cell production and it's easy to draw from them because they have good veins. Doctors are concerned about these statistics.

How you can become a bone marrow donor

First of all, you have to be a blood donor. To do that, contact your local blood bank. As a volunteer donor, your tissue type will be determined during a routine blood test. The results are saved in a bone marrow donor registry. Stem cells will only be harvested if you are chosen, and the chances of being chosen as a donor are very small. Still, it's incredibly important for people who are able to register to do
so, so that people who need bone marrow have the possibility of finding a donor. Imagine if YOU could contribute to saving a life?