If nothing works, I don't have much longer to live. Another transplant is out of the question because it wouldn't do very much and my body probably couldn't handle it anyway. Who would have thought this would happen?
I'm devastated, and so is my whole family. Life is so incredibly unfair—and now I just have to sit at home and wait to die? I don't have words to express how cruel this seems…How are we supposed to get through this?
I'm also crushed by the thought that, after I'm gone, my family will be left to deal with the fallout on their own. It's heartbreaking to think that they have to stay behind without me, with just their sorrow. Because really, how is anyone supposed to handle losing a family member?
The plan
Monday, April 6, 2009
No one in the family is taking this very well. Friends and even acquaintances—people I've just met once or twice—are sending me consoling messages. And I'm so thankful for everyone's consideration, whether I know them well or not. As far as I'm concerned, if you take the time to show that you care, that's enough. I'm overwhelmed when I think about how many people out there are thinking about me and wishing me well. It means so much.
I can't stop thinking about my family—especially my sister. I'm so worried about them. I don't want to be the cause of their unhappiness. Maybe it would have been better if I hadn't been born in the first place, so that they wouldn't have to suffer through this crippling sadness now. It's unbearable. I'm probably the one who's handling it best. I just try to make myself as indifferent as I can possibly be; I think that's the only realistic way of dealing with this.
You probably think I'm being really negative today, and you're probably right. We talked to the doctors at Riksen earlier, and they haven't given up on me yet. The relapse is still at an early stage, so I've stopped taking the immunosuppressing medication, and in about two weeks we'll find out if that's having any effect. The doctors will do everything they can for me. They also took this news pretty hard. They have a tough job, but they're also obviously doing something that's hugely important. They're going to have a meeting about me next Tuesday, I think, to talk about what they can try next, and what they need to be prepared for.
The reason for cutting the immunosuppressing drugs is so I can get a rejection reaction (GVHD). That's my only hope now. GVHD will allow my immune system to attack not just my body, but also the sick cells. I'll probably get some reactions within two weeks, but nothing's for sure. There's no guarantee it will work. No one knows.
My other option, if this doesn't work, is to inject/infuse lymphocytes from donors. For people not familiar with this practice, lymphocytes are donors’ cells that can help me to create GVHD on my own. I've heard of people with similar diagnoses to mine who've had relapses after three months and who have survived through this method. The doctors won't say whether or not they think it will work. They just don't know. They only know that there's a chance. No one can predict the future, so there's no use just speculating. The doctor we spoke with also mentioned a third possibility, but she didn't say what it involves. So I guess we'll hear more about it later, if it becomes necessary.
You're probably still wondering why they don't just give me another transplant. The doctors talk a lot about how risky it would be, and I know that it's a complicated process, and that a new transplant might just not work. But personally, I feel like I've got nothing left to lose. I've heard of people overseas who've had two transplants and still survived. They're still alive today. It sounds like a transplant might still be the fallback if nothing else works. They've never done two transplants on one patient here in this country, even though it sounds like it was considered in a few cases. Anyway, as long as they try everything they can, I'll be satisfied. Whatever the result, that's what really matters.
It's risky to cut out the immunosuppressive drugs. I could suffer from a serious immunologic attack that could kill me. But at the same time, these attacks are still important for me to get. The doctors would prefer not to treat me for them, too.
I honestly thought that my case was hopeless. The other people that I've talked to in my situation have been sent home to die. And thankfully I haven't gotten that advice yet!
Keep wishing me good luck!
And many did just that. In total, 353 readers commented on Regine's last two entries, among them conservative party politician Bengt Eidem, who is afflicted with leukemia and who wrote the book Deadly Serious:
Hi, Regine!
I just discovered your blog today. I was on Svein Kåre and Anne Marie's website and read about a girl named Regine who'd recently had a relapse. I went right to your site and for the past hour I've been getting caught up on your story. I'm so impressed by your courage. And I love the way you write. Your posts are sad, wise, funny, and always tremendously engaging. I think that despite your struggles, you manage to put smiles to a lot of people's faces. It's a true pleasure to read your blog.
At the same time, it certainly wasn't a pleasure to read about the latest developments. But, for now at least, it's encouraging to know that the substances the doctors are using and developing will enable people to survive these really dangerous situations. (I just wish they'd start using these substances sooner—like right now, with you!) Regine, I don't often write about my gut feelings, but I think you're going to survive. I refuse to believe that your time has come.
In many ways, you and I are kind of in the same boat right now. It looks bad, but there's still hope for us. When you write about your indifference, I recognize myself, but when you optimistically describe your treatment options, I recognize myself there as well. So you and I have a lot in common, and for now at least, we also have LIFE in common.
Let's hold on tightly to that. And let's beat back the immature cells that are trying to overtake our bodies!
—Big hug from Bengt Eidem, Trondheim
P.S.! Go moose! :)
Oh, Regine, sweetie, I felt twisted into knots after reading this! Your birth was one of the best things that ever happened to your parents, so don't ever think that they'd be better off without you. Think of all the happiness you have given those around you! Don't lose hope! ☺
—Jenny Cecilie
Dear Regine!
Ever since you were born, you've made every second of every day wonderful for your parents and your family. Regardless of what you may think right now, the memories that you share with everybody around you are worth their weight in GOLD, and those memories are something that they will never want to be without.
Much luck in the days ahead—it's so great to see all of the support you have; in the meantime, I'll be thinking about you and yours. Kisses to you!
Keep plugging on like you've done all along! YOU are a wonderful person and your blog provides a huge service to tons of other people. You're a true role model. ☺
—A big hug from Johanne
Dear, dear Regine!
I frankly don't know what I should write to you now. I felt faint when I read your entry, and am getting unbelievably frustrated. Jesus, this is so damn unfair!!
We're thinking of you, Regine!
The doctors at Riksen will have to put their heads together and come up with something very clever. They've managed to work miracles for others before, and they can do it again! If you aren't ready to believe in miracles yet, I'll believe for you. I can't wait to hear about your improvement.
—Many hugs from Maren-Sofie
I had a brother who got cancer when he was ten or eleven years old. He died when he was sixteen. We couldn't do anything about it because when he had his third relapse, the cancer had spread through his whole body. Everyone knew he was going to die—he had anywhere from two weeks to a month left. But we made his last days his best. I miss him terribly, because he was the only one I felt I could trust. But I still carry many great memories with me, and they comfort me when I'm sad, since I know he'll always be with me in one way or another. I just want you to know that I know what it's like to lose a beloved family memb
er. And you must not blame yourself in any way. But with all this support and compassion, you're definitely going to make it anyway! There's so much love and support out here for you, and trust me: That means something. That means a lot.
—Anonymous
Thanks for all the great comments everyone; it means so much to me! For people wondering if you can write about me, go ahead—that would be just fine. ☺
Bengt Eidem: I also heard about your relapse via Svein Kåre and Anne Marie's blog. I was really upset when I read about it, because you're one of my heroes, and I was really hoping it wouldn't happen to you—or to anyone else, for that matter. I read your book when I was waiting for the transplant at Riksen, and it was really, really inspiring. I understood that it was possible I wouldn't survive, but after reading your book, I felt like I was much better prepared for everything I had coming. Your book gave me courage.
I think you're right when you say that we have a lot in common. I hope that we both get better. We have to believe it's going to happen, even if it's difficult at times. (Especially with the mood swings: One day we want to give up and don't care anymore, and the next day we want to fight on forever, and have complete faith that the next procedure will be the one that works.) If you're reading this now, it would be so great to know how you're doing, because I'm very concerned. I've been wondering ever since I heard the terrible news.
—Regine
Hi again, Regine!
I'm doing well. I'm at home and I'm almost pain-free—so two of the most basic criteria for happiness have already been met. ☺ Got a high dose of chemo as a start to my treatment in February. In March and April I went for two and a half weeks of daily radiation treatments. Last radiation is tomorrow and then I'm on Easter break. Gonna be celebrating a city Easter in Trondheim, so I'm hoping for good weather.
Then it'll be exciting after Easter, there'll be a lot of tests and consultations between St. Olav's and Riksen, and after that we'll have a better sense of what lies ahead, and what we still have to do.
I will definitely keep up with your life and health via your blog, and I'll keep my fingers crossed (and my toes) for us both. In the meantime, happy Easter!
—Hugs, Bengt
An entry dedicated to my blog readers
Tuesday, April 7, 2009
I just wanted to take a minute to say how truly grateful I am for all of the support that you, my readers, give to me each and every day. Every word means so much to me, and helps to keep my spirits up. I was in a pretty dark place over the holidays, and maybe I still am, but your kind words help me to keep hoping. I love you all so much—even those of you that I don't even know.
I've also gotten some beautiful gifts from some of you. Ida and Maiken sent Easter eggs and a nice card. The card was unbelievably well done. Everything inside the egg was delicious, and the drawings of me at Quart1 put a big smile on my face. Martin's mother knit socks for me and wrote me a really nice card. It made me so happy, and (incredibly) the socks fit perfectly. She even knit my name on them, which made them extra special. Thank you so much!
Truth be told, though, the cards and gifts are nothing new. Throughout this whole process, people have been incredibly sympathetic, and I've received a ton of presents from family, friends, and even my mom's colleagues. I've gotten so many bouquets, cards, money, and wine—and again, I'm so thankful for everything. Martin has also given me lots of gifts: roses, CDs, movies, and really nice cards. Every time he gives me something, I can't help but cry; it makes me so unbelievably happy. But of course you don't have to give me a gift to show that you care. Kind and supportive words are more than enough.
Without you I could never have gotten this far!
If you have a second, you should definitely take a quick look at the film Martin made (and which he dedicated to me). Martin is unbelievably talented, and this film is totally special. I would love for you to see it, and I guarantee that you'll get something out of it. Please leave a comment for him, too—it would make him so happy!
You can see the video (which is a little over three minutes long) here: www.youtube.com/watch?v=hu133xtiQyM.
Regine's entry generated 95 comments, including many compliments for both the photo and film. Martin also wrote an entry:
Your blog's become an ad for my movie. ☺
I don't understand why this had to happen…After everything that you've been through, I finally thought it was over. That you were free. I thought that now, when we got together, we wouldn't have to worry about cancer, or chemo, or the latest test results. That the next time I'd need to comfort you, it would be because you missed the bus, or because you didn't win a contest (although that's not very likely, since you come in first place no matter what☺.) But apparently lightning can strike twice . . . .
Last Friday, when we stayed up late chatting online and talked all about our plans for the future, everything seemed perfect. Even as late as Saturday, five minutes before you called, I was stopping at the wine store to pick up a bottle of wine for you—and then the asteroid hit, and time stopped, yet again.
But…but no matter what happens now, and how difficult things get, we have to do what we can to enjoy ourselves. There is clearly hope, and we'll get though this together! You're everything to me.
Love you, Regine.
Yours,
—Martin
Under the title “Fear of Death,” Regine wrote the following on her PC on April 10 (not previously published):
Fear of death
Friday, April 10, 2009
What are you supposed to do after you hear that you're going to die? It feels wrong to go home and just wait. You don't want to lie in bed and just watch yourself falling slowly apart. When the doctors give up, is it worth it to try other methods? Lots of people would probably try to contact hospitals in other countries, or try alternative treatments. But if nothing can be done, what do you do?
I got some very bad news last week: I've had a relapse. They discovered that 10 percent of the cells in my blood marrow are immature. That's the news that I had to wake up to on Saturday morning. The Easter holiday had finally arrived, and I'd already made so many plans. Not just for Easter, but for the whole year. I was going to go to concerts, and festivals, and I was going to start working as a journalist at the local paper. I was going to start school again in the fall. Then, suddenly, all my plans went down the drain. There are so many things I want to do, but I feel like my time is running out.
Although I've had a relapse, it doesn't mean that there's no hope. The doctors still have some options for me. But I don't feel like I have much hope left in me. My reserves are small, but they're still there. And it's important to keep believing that things can turn around, because otherwise I'll just go crazy. I just don't want any more bad news. My body might be able to keep on fighting, but psychologically I've got nothing left to give.
In the meantime I try to do things that I love. I have to use the time that I do have as best I can. First and foremost, I try to spend as much time as possible with my family and friends. They mean everything to me, and without them I would never have gotten this far. And I'm so thankful that I have them, and that they're there for me. After all, I'm still the same person. I'm not just a cancer patient. A lot of people probably see me as “the girl with cancer,” but I don't want to be that person. I want to be normal again, even if only for a minute. Completely, totally normal. It's funny, but it's almost like I forget about everything else I have going on when people talk to me like a normal person, and when they behave completely naturally. Most people don't know what to say or do when they meet someone who has cancer. And although I can understand that, it still isn't very pleasant, and I don't think other cancer patients like it very much either.
When I'm not spending time with my family and friends (or even when I am), I also love to paint, take photos, take walks, and listen to music. I also love to write. It's amazing how much you can express through words and images. I've become a much better painter sin
ce I started working at it. The different brushes and color options can actually be really hard to manage over the course of a painting, but it's still super fun to try and learn on your own. I usually don't have anything specific I want to paint; I just start something and see where it goes. You definitely don't need good technical skills. I'm terrible at drawing. I think it just depends on creativity. If you're creative, there are no bad ideas. And I love it when I finally feel satisfied with something I've done. It's hard to think of anything else that feels so gratifying.
But more than anything else, I love photography. I love to be outside in nature and take pictures of whatever catches my eye. For me, when you're out in nature, there's hardly anything that isn't beautiful. Unfortunately, I haven't been in very good shape recently, so there haven't been many trips outside. I hope things improve. I feel energized when I take walks in the forest—when I'm able to just listen to the sounds, smell the smells, and see the incredible beauty all around me.
It's impossible to describe what nature is: It's so many different things—but for me, there's nothing better in the world. That's why I can't understand why we're ruining it. The forest next to my house is my favorite place in the world. I've always loved it. When I was little, my parents had to take walks with me in the forest in the middle of the night to get me to stop crying. Now someone is trying to tear it down to make a profit. I don't like that at all. In fact, I hate it, because in some ways I think the forest and I share a kind of identity.
As I die, the forest dies too. At the same time that the cancer is spreading, so are the houses. It's Easter break now. Construction is on hold. Maybe the cancer will take a break, too? That's what I'm hoping for, and it's the only thing that can save me, too. Plan A has to work now. Cutting out the immune suppressing drugs has to stop the cancer. The new immune system has to work; they have to get rid of the cancer cells that are in the marrow. If not, I'll die.
Regine's Book Page 8