Regine's Book (5 page)

I'm so incredibly tired and feeble lately. But I hear that it's normal to feel that way after everything I've been through. I wonder if you know what I mean by the word “feeble”? When I say that I mean seriously incapacitated by fatigue. I can't even do the most basic tasks—like buttering a piece of bread—without having to sit down after a few seconds. Luckily it's not so bad all the time.

Over the last few days, I've been able to go to the physical therapist, get home schooling (I took a history test), visit with friends who stopped by, and even paint a bit. Good to do some “normal” things, even though everything here is pretty far from normal. So while everyone else was at the Christmas dance, and going to parties and having fun, I sat at home and studied for a history test.

My blood values are sinking (totally normal), and as of yesterday we found out that I need some more blood. And that's not an easy task here in the city. I have to have irradiated blood because of the transplant, and they don't have that here. So they have to order it from Trondheim. In fact, my blood is going to come with the Hurtigruten,
¹²
but I won't get it before tomorrow. I'm a little worried that it will take too long, but I'm still counting on it going well overall.

Yesterday I read online that bone marrow transplants don't help with MDS. Got so irritated with both the internet and myself. I shouldn't read anything about it, since this isn't relevant anyway. All the doctors say I'll get well, and I trust them more than the internet.

Thursday, December 25, 2008

C
hristmas Eve was much better than expected. I wasn't actually looking forward to it very much. Was thinking the whole time that I didn't need gifts, and this year I hadn't bought any either. But Christmas Eve is about more than gifts, of course. The nicest thing is being able to spend time with family. Grandma and Grandpa visited and so did my cousin. It was super nice and everyone gave super nice gifts. Among other things I got a flatscreen TV (I'm so spoiled!), a dress, CDs, DVDs, makeup, and lots of other stuff too. The best gift I got was from my two best friends. They made a photo album with a lot of pictures in it. The pictures were of us for as long as we've known each other. In other words: a successful evening all around.

My thoughts go out to everyone who had to spend Christmas Eve at the hospital. I hope you had an okay time, all things considered, even if it wasn't the same as being at home. Luckily Christmas comes around every year. ☺

Sunday, December 28, 2008

I
t's a little more than a week until I go to Oslo. (Help.) And I have a cold. (Bad timing.) Hope I get well before I travel. I'm thinking about the transplant a lot lately—probably way too much. Hardly five minutes go by without me thinking about it. I wish I was going into
this without any ideas or knowledge of what was about to happen. Ignorant about all the painful things that can happen. Now I know way too much. I've read a lot about the transplant. Read about the pain. Read about the relapses. I've never dreaded anything as much as this. I'm scared. More accurately, I'm terrified. Thinking of death. Death is sinister. That's what I fear most of all right now. I don't want to die and be separated from my friends and my family. Don't want to leave them behind, depressed. I want to live more, experience more. Will I ever get out of here, out of this prison?

Eighty-seven bloggers commented on Regine's entry, among them her good friend Martin, and Anne Marie, a relative of cancer patient Svein Kåre:

As I've said before (the last time being earlier today), you have nothing to fear. This is a war, but the resistance movement on your side is effective. ☺ In a while, and probably sooner than you think, you'll be able to look back on what's going on now as a finished chapter—and then you can start a new one.

Because with every day that passes, you're one day closer to getting well—or getting free, to borrow your metaphor.

—
Martin

Hi, my dear Regine. I know you've visited and read about us. I hope we'll get to meet you when you come here—we'll probably be here until you come. It's a fight…it's tough…but if you fight to survive, you can do so much!!! You find strength you had no idea you had, and the bad/sucky days all end eventually. There are better days ahead, I know it. You've had bad experiences already because of the disease, and that helps you, even if it doesn't always feel that way. Knowledge is both good and painful. Use what you've learned to make yourself
strong and prop yourself up. The fact that you're able to read about others shows how incredibly tough you are—most people aren't brave enough! Hang in there! We're rooting for you!!! Over here we've celebrated Christmas Eve today and had a great time!!! SK has gotten much better and we're doing well!! I wish you a speedy recovery from your cold!!!

—
Big hug from Anne Marie

Tuesday, December 30, 2008

F
irst of all I want to say thank you so much for all the great comments on my previous post (and on all my other posts). You all are just amazing!

A lot of you ask and a lot of you probably wonder what both of my conditions are, and what a bone marrow transplant is. So I thought I could write a separate entry about that. It's not always easy to understand what all of this is about and I'm not sure if I totally understand it myself.

You can find all kinds of strange and varied information about these things on the internet. (I've been told by my doctors not to read about this stuff online. They say I should only refer to the information they give me.) Some internet sites say that you can't recover from MDS, but that's not true—not anymore. Still, some other web pages have some good general information about this disease.

A lot of people also think that a bone marrow transplant is an operation. That's not true either.

Giving bone marrow is totally safe, and I encourage everyone to become blood and bone marrow donors.

MDS—Myelodysplastic syndromes

Myelodysplastic syndromes encompass a variety of conditions related to damaged stem cells in the bone marrow. Stem cells give rise to all other blood cells, so in other words, all blood cells develop from stem cells. Both the number and function of the cells can be affected by this syndrome. The classification of MDS is based on which type of blood cell is affected.

Patients may be asymptomatic for long periods of time. Symptoms arise due to loss of the normal function of peripheral blood cells.

Fewer red blood cells (anemia) can lead to fatigue, shortness of breath, increased heart rate.

Fewer white blood cells can result in recurring infections.

Fewer platelets can cause bleeding into mucous membranes and skin.

The disease can become so serious that, among other things, it can turn into acute myeloid leukemia.

AML—Acute myeloid leukemia
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This is a form of cancer in which immature blood cells in the bone marrow, so-called myeloid progenitor cells, grow and divide uncontrollably. Myeloid cells are the precursors of other blood cells, including red blood cells. The uncontrolled growth of myeloid cancer cells results in fewer normal blood cells, i.e., fewer red blood cells, white blood cells, and platelets.

AML can be sub-classified into different types based on the appearance of the cells and their biochemical properties. The malignant cells can be seen in both the bone marrow and peripheral blood.

Symptoms usually develop over a relatively short period of time. Symptoms include:

• Fatigue and tiredness due to fewer red blood cells (anemia);
  
• Frequent infections due to decreased immune function (fewer white blood cells); and
  
• Bleeding in the skin and mucous membranes due to fewer blood platelets.
  

Other symptoms can include blurry or double vision, rashes, headaches, nausea, and vomiting (due to irritation of the meninges or lining of the brain). Some individuals complain of bone and joint pain. Up to 50 percent of patients have had symptoms for three months before being diagnosed.

Bone marrow transplant (stem cell transplant)
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This is a type of treatment only offered to patients with diseases with a very bad prognosis—diseases for which life expectancy would be limited with any other treatment. An allogeneic stem cell transplant means that the patient receives cytotoxic drugs to destroy the diseased bone marrow, which is then replaced with healthy bone marrow from another individual. The treatment is so toxic that there are many potential complications, including death. Before being offered this treatment, the patient's condition is carefully reviewed by a health care team.

At the time of bone marrow donation, a healthy donor is admitted to the hospital. The bone marrow is aspirated from the pelvic bone.
The donor is under full anesthesia. Donating bone marrow is completely safe.

The bone marrow from the donor is given to the patient through a catheter eight days after the chemotherapy. It is similar to a long lasting blood transfusion. The stem cells find their way to the bone marrow, settle themselves in, and begin to form blood cells. No one can explain exactly how this happens. It takes about two weeks for new stem cells to start producing blood cells. The day the patient receives the bone marrow is called day zero, and is the beginning of a waiting period, which can be a significant ordeal for the patient and their family. From now on, it's the supportive care that is most important. This includes receiving blood products and antibiotics until the new bone marrow starts functioning.

Wednesday, December 31, 2008

I
can clearly remember the day I was at my primary care physician, and she told me I might have to have a bone marrow biopsy. I had gone to the doctor so many times since May, and now it was August. My doctor did a physical, but didn't find signs of anything serious. She listened to my heart, and it beat rapidly. That wasn't so strange, I thought, but I was still in tears. My doctor told me it was nothing to be worried about. If they were going to take a bone marrow biopsy, it was only to rule out anything serious. This was definitely nothing serious. It was strange leaving her office with the thought that it might be leukemia. I knew something was wrong with me, and even suspected leukemia. But I didn't really think it would be.

I'd just started the second year of high school, and I'd been looking forward to it. I thought this year would be better. Things were finally falling into place. But it didn't turn out that way. I'd been going
for three days when the terrible news came. I remember one particular day around then, in class, when we were supposed to write about our plans for the future. Ironic, I thought. I wrote and wrote, barely managing to hold back the tears. I really wanted to live and get to experience what I was writing about. I was thinking I might not have a future if it was leukemia. But I managed to convince myself that of course it couldn't possibly be anything so serious. That same day I found out that it had really happened: I had it. My world collapsed. Strange to think that I was supposed to go to a party that day. Everything happened so fast. My freedom was ripped away from me.

I often think about how things could have gone if they hadn't discovered the leukemia that early. What if I hadn't gotten such rapid heart palpitations while I was on vacation in Rome?
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There wouldn't have been a reason to contact my uncle, who's a heart specialist. If I hadn't gone to him, they wouldn't have discovered it when they did. Then I would have had to go to my own normal doctor—definitely without making any progress there either. It could have had deadly consequences. But it didn't seem like she really thought it was leukemia. Don't misunderstand me. I'm not blaming my doctor. Who really thinks that a seventeen-year-old could have leukemia?