Regine's Book

by Regine Stokke

  3 Myelodysplastic syndromes (MDS) are a group of diseases in which bone marrow stem cells have genetic defects that prevent normal maturation into healthy new circulating blood cells. Patients may have similar symptoms to those seen in AML. Aggressive forms of MDS may evolve into AML and some patients may have intermediate features that are somewhat in between.

  4 Chromosome abnormalities, or genetic defects, in bone marrow cells are the initiating event which may result in the development of leukemia or MDS. No one knows for sure why these mutations happen, but some of the possible causes include toxic exposures, infections, and radiation. Chromosome 7 abnormalities often correlate with a more aggressive disease course and may prompt earlier consideration of bone marrow transplantation.

  5 Ovarian tissue freezing is an experimental option for preserving fertility in chemotherapy patients. Other options for preserving fertility include embryo freezing and egg banking.

  6 Leukemic cells can infiltrate the central nervous system (particularly the lining of the brain and spinal cord), which is less accessible to intravenous or oral chemotherapy than the rest of the body. Therefore, chemotherapy drugs must be infused directly into the cerebrospinal fluid, which circulates around the brain and spinal cord. This type of treatment is most likely to be required in acute leukemias.

  7 An infarct is an area of tissue death that is caused by a lack of oxygen due to obstruction of the tissue's blood supply.

  8 Soccer team from the city of Trondheim.

  9 Chemotherapy drugs are capable of killing rapidly dividing cancer cells, but they also suppress the production of the normal white blood cells needed for an intact immune system. After chemotherapy, the immune system gradually recovers as the bone marrow produces new white blood cells. Drugs (so-called “growth factors”) can be given to speed up this process.

  10 In laparoscopic surgery (also known as keyhole surgery) operations in the abdomen are performed by inserting a camera through a small incision.

  11 The National Hospital located in Oslo, Norway.

  12 A passenger, freight, and tourist line with ships sailing along the coast every day.

  13 The following medical information comes from online health website www.pasienthandboka.no.

  14 From the Riksen Hospital.

  15 Palpitations can be due to anemia (decreased hemoglobin), which decreases the circulatory system's ability to deliver enough oxygen throughout the body. An increased heart rate is one way to compensate for decreased oxygen carrying capacity.

  16 Norwegian schooling generally breaks down into three parts: elementary school (grades 1–7 for ages 6–13), middle school (grades 8–10 for ages 13–16), and high school (grades VG1–VG3 for age 16–19).

  Winter, 2009

  New surroundings

  Tuesday, January 6, 2009

  I'm in Oslo! I arrived yesterday, and so far the setup seems pretty good. The nurses are nice, and they all said that everything was going to be okay—that I'd come to the right place. I had a bone marrow biopsy yesterday, and it actually wasn't that bad! I liked the doctor who did it. Today I started the chemo cycle. I had to take twenty-four pills today in four doses. Still, I haven't had much of a reaction yet. Am just a bit dizzy from the pills (which are supposed to work against the chemo-induced cramping). The food here is good, too—luckily. I've already put up some pictures and some other things to make the room feel a little bit cozier.

  Spoke with both a teacher and physiotherapist today. Will have classes as long as I'm able to, and will have physiotherapy during the isolation period.

  Just keeping my head down

  Saturday, January 10, 2009

  Just wanted to post a quick update. Things are still going well, given the circumstances. Yesterday I took the last chemo pills—and all in all I've taken 384 of them (which is a lot). I've got two days of intravenous chemo left. It starts tonight. I'll probably have to take a kind morphine-ish drug to deal with the facial pains.1 But the thing I'm most worried about is the nausea. Hopefully it won't be too bad.

  I'm still managing to eat, and hopefully I can keep that up a while longer. It's a little scary how sore my throat can get, but at least it isn't dangerous.

  The isolation period is approaching, and that's going to be really intense. I'm obviously scared about it, and really anxious, but hopefully it won't be as rough as we're expecting. What worries me the most is the possibility of lung complications or organ bleeding—that would be really serious.

  Days go slowly. They're sad and boring. There's nothing to do. I'm just sitting around and waiting. Hours drag on and on, and days seem to take weeks. I wish I could just sleep through all of this.

  The road ahead

  Wednesday, January 14, 2009

  I finally had the transplant! The bone marrow was transferred to my blood yesterday morning, and there weren't any complications! The doctor thinks everything is going really well, and that I received a lot of cells. Now we just have to get through steps three and four. Step three is the isolation period;2 step four is recovery. The doctor said the isolation period usually isn't that bad, but we just have to take it one step at a time. He understands that at this point I just need a break, that I've been through enough. The isolation starts on Sunday, so they've already made a room ready for me. Like I said, it's all going to be pretty intense.

  The chemo I had over the weekend, the intravenous one, made me really sick. One day I had intense facial pain, and I threw up a lot. It was horrible. I got painkillers, but they didn't do anything. The next day was better, but I still threw up a lot. And on Monday I just lay in bed, not doing anything; I could only manage to get up to go to the bathroom. I couldn't even watch TV—and that says a lot. Luckily things are going better now. I'm kind of struggling with eating because I've thrown up so many times over the past few days, but it doesn't matter anyway. My stomach hurts and it doesn't want any food. The nausea hasn't gone away completely yet, but it's getting better. This was definitely the worst chemo experience I've had so far.

  It feels amazing to know the new bone marrow is in my body. Finally it's here, safe inside me. You're always scared something will happen while it's being transported. (Imagine if someone dropped it on the ground and it had all spilled out!) But it went well! Now I just have to wait for it to start working….

  Ninety-four readers commented on the good news, among them Regine's grandparents, and fellow cancer patient Svein Kåre:

  Today is truly the first day of the rest of your life, Regine. The days ahead will certainly have some highs and lows, but you can handle it for sure. You're strong both in mind and body. It will be spring soon, and we can't wait to go picnicking with you!

  —Grandmother and Grandfather

  Congratulations on the fantastic milestone!!

  I'm impressed that you managed to eat as much as you did during the chemo cycle. (I struggled a lot with eating, even though my chemo was way less intense than yours.)

  Johanne, Anne Marie, and I hope to get to see you before we leave Riksen!

  And I hope things turn out well. No more drama! We all think you've had enough now!

  We're so impressed by your strength and your ability to handle all of this!

  Go girl!

  —Svein Kåre

  Stomachaches, intravenous nutrition, and other stuff like that

  Friday, January 16, 2009

  My stomachaches are starting to really get on my nerves. It hurts so much! It's the worst at night, when they stop giving me the Sandimmune.3 My appetite isn't good either; I hardly eat anything. Half a slice of bread, some ice cream, and a little bit of chocolate and pretzels is all I've eaten today. Drinking is also hard. So now they've started feeding me intravenously. It's a bit of a relief, actually. It's so frustrating when it's a struggle just to eat.

  I had a good morning today. I was able to take a shower, and had physiotherapy and tutoring. Not bad! During the evenings I've just been staying in bed, watching TV. And that's how the days go. On S
unday I'll switch into the isolation room, where the drudgery continues…

  Isolation

  Monday, January 19, 2009

  Things are totally fine. Not very different from earlier, except for the fact that I can't walk out the door. Today we're just waiting for the fever to start (because of another bout of blood poisoning). They want to start me on Meronem this time, an antibiotic that actually works. I'm really worried that I've become resistant to it though. I hope the symptoms are limited to fever, tender mucous membranes, and stomachaches. I can't handle anything more than that. But I know other complications could come up. These are going to be some tough days ahead.

  Life is just way too hard. Why am I the one, out of everyone, who has to experience this? I'm sorry but that's all I can think about. The whole time. It's impossible to accept. Life is just so unfair.

  I think about this year and how much I'm missing out on. This is the year everyone turns eighteen and celebrates. Meanwhile I'm left to wonder if I'll even make it to eighteen.

  I watch people who jog or walk by my window. They just have no idea how lucky they are.

  A total of 128 people wished to express their support after Regine's entry:

  Hey…words seem so weak…so I want to give you lots of encouragement and hugs…Even though I hardly know you…it still feels like we're so close, with Svein Kåre in the same unit…Sometimes, especially after we've gone through something so hard, I also can't help feeling that this is all just so unfair…Someone I know said that sometimes you have to go down into the cellar and just sit in the dark and pay attention to what you feel before you're ready to embark on the road ahead…There's probably something to that…You can't always manage to think positively and be optimistic…But as someone wrote on our blog, “If you're forced to walk through hell, don't look back: just keep walking.” You do what you have to do, and better times will come. Stay courageous! Reach for the good things that lie ahead of you, big or small. We're rooting for you with everything we've got!!!

  —Hug from Anne Marie

  I have tears in my eyes, because you're totally right. The things we take for granted mean everything when you think about actually losing them.

  I hope you don't have to go through any more of this, and that the light at the end of the tunnel is just around the bend. You're strong, and you're giving us a ton of insights into this whole process. Maybe you don't realize it, but your words will have an effect on a lot of people's lives by helping them realize what they have, and teaching them to appreciate that.

  And for that you deserve the utmost respect.

  —Dora

  The coming time could definitely be tough, yes, but you've been tested before, and you fought your way through it. The staff said that the worst is definitely behind you now. You don't have much time left at the hospital. Soon you'll be free and healthy again! And of course you'll turn eighteen. I'm supposed to take you out that night! ☺

  —Martin

  I have to say it: You're incredible.

  I'm pretty sure I would never be able to handle what you're going through right now. It's sickening how life can change so quickly. I've been reading your blog for a while now. ☺ But tonight I've been staying up and looking through some of your entries, and now I'm sitting here with eyes wide open, and tears pouring down my face.

  It's sad, and it shouldn't happen to anyone. Cancer shouldn't exist, but unfortunately it does. And it's so unfair that someone has to get it.

  Like so many others, I just want to tell you to get well, and good luck on the road to health. ♥

  The day when I read your blog and see the words “I'm cured” at the top of the page, I'll be so happy.

  —Girl, fourteen ☺

  Possessed

  Thursday, January 22, 2009

  I've come down with a fever. Incredibly enough, I didn't have any chills, but that was probably just because the nurses gave me antibiotics right away. Otherwise, not much is new. I can't manage to write very much anyway, since I'm too spacey. I've been given a so-called pain-pump. I don't think it works that well, but the doctors say my pain would be way worse without it. The way it works is pretty simple: I just push a button whenever I experience pain. Naturally there's a limit to how much painkiller I can get though. It's convenient, but the downside is that I become really, really tired. I don't do anything but lie in bed and doze. Am too tired to manage anything at all—can't even watch TV.

  But everything is moving along smoothly, according to the doctor.

  Better prospects

  Wednesday, January 28, 2009

  Things are starting to get better (I think). The bone marrow has started functioning, so I get to leave the isolation room tomorrow! So in the end, I did it: I made it through the isolation period—the part I was most scared of; the part I've been so afraid of the whole time. It was definitely bad, but not as bad as I thought it would be. I think maybe the period right before I went into isolation was worse. Now I'm really wondering what's going to happen next. First of all, I have to start eating and drinking normally on my own, and I have to be able to swallow pills. It can take time, but I think it will go well. A nutritionist was here today, and he gave me some tips. Apparently, small, frequent meals are the way to go. I got started on that yesterday, but I haven't eaten anything today. I can't honestly say that I want food, but I have to try. I hope I won't get any GVHD4—or at least none that requires treatment at the hospital. That would be another bad break, but I'm prepared for the possibility, especially since so many people do have them.

  Maybe I'll get to go to the patient hotel soon? That would be great—because at that point people tend to suddenly get much healthier. Just getting released from the hospital does something to you. I still have a ways to go before I can go home and live normally, but I feel like I'm definitely on the right track. If I can just keep improving, it won't be long before I'll take off on the last phase of this long journey—and start coming back to life.

  I know that it will be five years before I'm considered truly cured, and that I could have a relapse during that time, but it's important not to focus on that. This treatment is going to make me well.

  Hollowed out

  Friday, January 30, 2009

  The isolation period ended yesterday. I can't really say I feel any freer though, since I'm just sitting here in my room anyway.

  It's just as boring and just as lonely as before. I'm incredibly fed up with all of this. I know things have been even tougher for other patients, and that they've spent more time here than I have. But I just want to go home. I could still be here a while. I was actually supposed to go to the patient hotel on Monday, but there aren't any free rooms, and now it could be a week before I get there. But what would the difference be? Maybe there's not even internet at the hotel. It's definitely not luxurious over there. But then again, what else do I have to look forward to?

  Today I haven't done much except sit in front of the computer and listen to music. That's definitely something I hadn't done in a while—which is strange, because music is one of my big passions. Mom and Dad are in town, and hopefully they'll bring back the Wardruna5 CD for me. (They said they'd look for it.) But either way, I've already listened to some great bands, like Sigur Rós, Enslaved, Ulver, and Queens of the Stone Age.

  I'm looking forward to going to concerts again when I'm healthier. Today I've dared to look that far ahead at least. My mood has swung pretty violently between highs and lows today. I've looked back on the past and forward to the future. And I've thought a lot. It's not always that easy to look ahead. Everything seems so endless. I've been in this so long that it's difficult to see a life outside “the walls.” When I look at pictures of myself before I got sick, I can hardly recognize myself. The illness has left its mark on me, both outside and inside. I know that my life will never be 100 percent normal again, but I hope I can do well when school starts again (along with everything else). It's almost as if I'm afraid to plan for school in the fall. I'm
scared of disappointment. The nurses and doctors are happy that I'm thinking so far ahead, and that I want to start school again, but still they always tell me that I might not be able to handle it. That's hard to hear (even though I know they're saying it so that my expectations will be realistic, and so that I won't get too disappointed if it doesn't work out that way).

  By the way, eating is going much better. I've been able to take all of my pills. The doctors say that I've come a long way already, and that I should be happy about how quickly things have progressed. But they also made sure to say that I still have a long way to go.

  On another note, I just want to say that I think it's tragic that they've started “developing” the forest behind my house. They're going to build roads and new houses there. I almost started crying when my sister told me about it. How could they ruin something so beautiful? That forest is one of my favorite places in the world. I have so many great memories there, and it was such a big part of my childhood. In bad times, I've looked for comfort and inspiration there, and even when things are good I love taking photos there. What's going to happen to all the wildlife that lives there?

  “Taken by the Mountain”

  Saturday, January 31, 2009

  The Mountain welcomed her,

  Embraced her hard and harshly

  And then the world was Night,

  And She was lost forever.

  Her dying breath, a scream,

  From a Time that's gone, but not forgotten;

  From a body, once living, now Stone