Regine's Book (17 page)

Espen is apparently getting good results from the treatment. Go to
www.espensteen.com
to read his whole story. He would probably appreciate if you could contribute with anything at all, especially since he and his family can't afford to pay for the treatment.

Wednesday, May 13, 2009

T
he chemo cycle is underway and so far it's actually worked better than we expected. Originally, the plan was to do a five-day cycle from Monday to Friday, but now it's not certain that I'll need the Friday session. We'll look at the blood test results tomorrow. You never know what's happening in the bone marrow before taking a test, but according to the blood tests the cycle has had a really good effect, and the doctors seem to be really surprised (in a good way).

When I started the cycle, my white blood (leukocyte) cell count was 26. A healthy person would have a count of three to ten. These
numbers indicate if there are a lot of cancer cells in the blood, but if the number is high, it can also indicate an infection. For a person with cancer, these numbers will just rise and rise if they're not treated. In one day, they fell from 26 to 5—a really incredible drop which indicates that the cycle is working well.

In about two weeks they'll give me a new bone marrow test to see how many cancer cells are left. That will be a long day.

So far I haven't had significant reactions to the chemo. My appetite isn't the best, but I manage to get some food down. And luckily I don't feel nauseous at all! Otherwise I'm just a little tired. The doctors say I'll have some aches next week, and that's also when I'll probably get blood poisoning. But it's possible that I'll be able to take a trip home right after the chemo is finished. Maybe for the weekend. I hope so. If not, it won't be for a while.

Martin is visiting. He spent the night here at the hospital. It's nice to have a visit from someone besides my parents (but of course it's nice to have them, too).

Yesterday I went into town right after I had the chemo. I went to the movie theater, where they also have an eclectic group of films available as DVDs. I bought David Lynch's
Blue Velvet
. I really liked it. Thumbs up!

I also found out from Ann Olaug Slatlem (who's been so kind and who organized just about everything for my exhibits) that Morten Krogvold showed some of my photos to his photographer friends—and that they really liked the photos! That's super exciting—it makes me so happy to hear stuff like that. I also sold some photos, but I'm not exactly sure how many yet. I think they'll also become available for sale online eventually. That would be great.

Thursday, May 14, 2009

I
just wanted to remind you all about the benefit concert tonight at Tahiti at 6:00 pm. It's going to be amazing, with music and dancing and more. Unfortunately I can't be there, even though I'd love to go. I'll probably get to go home tomorrow, and I'll have my last dose of chemo in the morning. I hope that those of you nearby will make it to the concert. Just to clarify: All the money that's raised will go toward MDS research and to improving hospital conditions for young and adult cancer patients. Many people think that the US has a miracle cure (which they don't), and always tell me that I need to get treatment overseas. In Norway my treatment is totally free, and I hope that will continue. If there are changes, I'll let you know.

Something that's pretty sick is that I had 90 percent cancer cells in my blood before I started the chemo cycle here. I've never had so many in my blood before. My bone marrow was 26 percent. It probably wouldn't have been long before I died if they hadn't started the treatment on Monday. So now, after the treatment, there aren't many left in my blood, and hopefully the same is true for my bone marrow, but you never know for sure until you get tested. I'm hoping for good results; I'm feeling optimistic myself, but of course I don't want to count my chickens before they hatch.

I went to a café today with Martin and my dad. It was nice. We ate nachos and had some cookies for dessert. It's nice to have a change from the hospital while I can. Tonight we'll probably watch another David Lynch movie. They have a big flatscreen TV at the hospital that they can wheel into my room, so in a way, it's kind of like going to the movies. Very cool stuff!

Sunday, May 17, 2009

S
o, I made it through the weekend; that's not bad. It was so great to get to be at home. I haven't had any side effects yet, and I'm trying to enjoy myself as much as I can. My immune system has hit rock bottom—so there's no good news there. So now I'm just waiting for the fever to start. It could happen any time, but luckily I'll be at home
and won't go to the hospital unless I get ill. It's not guaranteed that I'll come down with something, but it's very likely, and then I need to deal with it right away.

May 16 was a good day. I was outside and barbecued with my friends, and kicked back. The weather was good and we sat outside for hours.

As usual, I went to the hospital first thing today. I have to get blood platelets
¹⁷
every day, since I run out of them so fast, but the process doesn't take long, so I'm not complaining. The rest of the day looked promising. I even put on my folk dress
¹⁸
and went to Grandma's house to say hi and have food and cookies. And after that I met some friends at the park.

Things didn't go so well there (for reasons I won't go into) so I decided to go home. Martin ended up coming over, and after that the day quickly improved. I thought I'd be in a bad mood for the rest of the day, but Martin always makes me happy. We drove around a bit, and I bought some junk food. We parked somewhere, found a bench, and just enjoyed the nice weather. It was lovely.

I'm glad I didn't dwell on the fact that, based on my prognosis, this will probably by my last May 17.
¹⁹
I don't want anything to do with those kinds of thoughts.

I also want to give a big thank you to the band and to everyone who showed up at the benefit concert. So far I've only seen clips from the concerts, but what I did see looked amazing. It's inspiring when so many people get involved, and show support. Totally incredible. They raised about 11,000 crowns! You can read about and see pictures
from the evening here:
www.tk.no//eceRedirect?articleId=4333787&publd=113
and
www.tk.no/speilet/article4332495.ece
.

Tuesday, May 19, 2009

S
o, my fever started yesterday, as we had expected. But luckily I got to enjoy the weekend. My good friend Silje was visiting me when the fever kicked in. Luckily it wasn't overwhelming. We drove to the hospital in Kristiansund to get the antibiotics, and my fever went down pretty quickly. Am glad I avoided the chills; they're brutal. Things seem to be going well now, but you never know.

I don't know when I'll get to go home yet. If my condition stabilizes, I definitely can. But no matter what happens, I need antibiotics three times a day, and I need blood transfusions almost every day. It's been a long day. It took three whole hours for me to get the blood even though it was already ready in the blood bank. It almost seemed like they'd forgotten about it. I also had to laugh when the nurse asked me how the thermometer worked. I assume most people have seen a thermometer before.

Martin is visiting and keeping me company. It would have been really boring to sit here alone and stare at the ceiling.

I'm hoping to go home for a while tonight; that would be ideal, anyway. And in general I'm counting on this going well. Anyway, nothing serious yet! I feel pretty good.

Oh, I also wanted to let you all know that my photos are for sale on Facebook. All proceeds will go directly to my support fund. With regards to the support fund, I really think a lot about how to use the money. I think it's important for cancer patients to be comfortable and happy while they're at the hospital. I've learned from people that hospital conditions for adults are quite bad. There are few (if any)
activities or facilities. It would be great if you could suggest things we can do! It's all about being creative.

This link will get you to the Facebook group:
www.facebook.com/home.php?#/group.php?gid=70963793247&ref=ts

And people who don't have a Facebook account can see the photos here:
www.smirr.deviantart.com/gallery/

Keep in mind that not all the photos here are for sale, and sometimes they have different titles.

Orders can be sent to
[email protected]
.

From Ann Olaug:

Welcome to Regine's fantastic and powerful photo exhibit on Facebook. Some of the world's best photographers visited the
Nordic Light
photo festival in Kristiansund and were in awe of Regine's work. Congratulations, Regine! You should be SO PROUD!

The photos will be for sale on Facebook for as long as Regine wants. If you have any questions regarding the exhibit, or about purchasing photos, just contact me at
[email protected]
.

—
Ann Olaug
☺

Thursday, May 21, 2009

B
etter late than never. Finally, here are the answers to the second round of questions…. ☺

Tonje asks:

Question:
I have a question about your disease, and I totally understand if you don't want to answer. I was wondering what your symptoms were at the very beginning? What made you decide to go to the doctor? I wish you all the best; you're going to manage this.

Answer:
First, I was incredibly dizzy, my ears were ringing, and I just felt weird. Later, I had a serious flu right in the middle of summer. And after that a sinus infection. I had severe headaches for many weeks, a lot of UTIs, and a sore throat. I was so weak that a lot of times I came close to fainting. I couldn't hold myself up. When I was making breakfast, I needed to sit on a chair because I couldn't stand. Right before I was diagnosed, I also had some bruises on my feet, and bleeding in my gums. I don't know how many times I went to the doctor, but they never found anything.

Eirin asks:

Question:
What's a transplant? What does it do and what do the doctors do? How does it work? How did you react when you found out that you had cancer? Could you show us a picture of yourself when you had hair?

Answer:
I'll try to explain it simply, so that you/everyone don't need to read a whole page of medical jargon. Stem cells from a donor are injected into the patient's blood. After two to three weeks, the stem cells find their way into the bone marrow and start producing healthy blood cells. The stem cells can be harvested from either donated blood or bone marrow.

My first reaction was to burst into tears.

Ane asks:

Question:
Do you have/have you had any pets, and if so, what kind? And what are their names?

Answer:
I have a cat named Josefine. We also have a rabbit named Sniff, but he's my sister's responsibility, even though (for the most part) my parents take care of him. Right, Elise? ☺

Question:
If you had the choice of traveling to the Mediterranean for a week or $1 million, what would you pick?

Answer:
I would choose the million, obviously. ☺

Question:
What kind of music do you like?

Answer:
I mostly listen to rock and metal, but I also listen to a bunch of other stuff.

Problematic asks:

Question:
Did you have a blog before you got sick?

Answer:
I had a blog before, but it didn't last long.

Question:
What's your favorite period of Ulver's long musical history?

Answer:
I actually like almost all of Ulver's music, but of course there is some that I'm more into than others. I especially like
Bergtatt, Kveldssanger
, and
Teachings In Silence
.

Violaine asks:

Question:
Do you sometimes have trouble sleeping if you get bad news?