—Big hug from Anne Marie
What's MDS/AML and what's it mean to get a bone marrow transplant?
Tuesday, December 30, 2008
First 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 leukemia13
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)14
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.
A look back—Part 1
Wednesday, December 31, 2008
Ican 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?15 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?
A look back—Part 2
Thursday, January 1, 2009
Once in a while I think that this is a kind of test I've been made to take. A trial I have to go through. Inside I know I can get through it. I'm not dissatisfied with my life anymore. I want to fully experience it. To be confident that it won't suddenly vanish. I can't lose it. Sometimes I also feel so guilty, as if I deserve this somehow. Because I was so dissatisfied before. Of course, I wasn't dissatisfied all the time—don't misunderstand me. I actually did like my life. But lots of times I was. And I regret that. I regret it so much. Why couldn't I just enjoy it? The only thing I did was wait, wait for it to get better. To get better than it was.
Ever since elementary school, I've waited. Back then I looked forward to middle school, when I thought everything would get better. But then I started middle school, and things didn't change very much. I can understand why I was dissatisfied in 8th grade. A lot of people weren't very nice. People were mean because I was smart. And they were mean because I was thin. Their reactions really affected me, and I felt insecure, and that insecurity never really disappeared. I cried a lot and was always in a bad mood. I hated how
I looked.
Luckily, things changed. In 9th grade things got much better. I had more friends and there were fewer mean comments. I cut and colored my hair, which made me prettier. I became more self-confident. But I still wanted something more from life—and meanwhile the insecurity was still there, just to a lesser extent. In 10th grade my friends and I spent our time looking forward to high school.16 That's when things would get better, even though the middle school was excellent. When I think back on middle school now, at least the last part of it, it was actually the best time of my life. Things were great.
Finally I started high school. Things weren't as expected. I was hoping for so much. Because of my insecurities, I held back, and didn't get to know many new people. I guess I wasn't really open to getting to know them either. Now I regret not getting to know them. They seem like a great group! They sent me a great card and gift when I got sick. I hope I get to know them because I really want to. Definitely.
I spent my first year at high school complaining a lot. I'd done things I wasn't proud of and I really regretted them. I guess I never managed to get over that regret. After a few months, I got a boyfriend, and I was happy. I'd wanted a boyfriend for a long time. But my love life wasn't quite what I expected either. It ended, and when it did I was crushed and hurt, and it took a while for me to get over it.
My girlfriends and I hung out a lot, and whenever we got together, we sat around and complained. Things were never good enough for us. We wanted to have fun all the time. We'd been on a language trip and to a concert that year and we were happy about that, but we weren't as satisfied as we should have been. We wanted to go to concerts all the time, and go to crazy parties. But it wasn't like that, and so we had to whine about it. We didn't know much about life back then. And little did I know that my life would soon be turned completely upside down.
This summer I had so much fun. I went to the Hove music festival, and to Metallica and Iron Maiden concerts, and I went to Rome. I did lots of great things and got to know lots of new people. But the whole time, I felt sure that something was wrong with me. I almost fainted a bunch of different times. I found blue spots on my feet, and bled from my gums. I was scared too. I knew these were signs of leukemia. I also had lots of infections: a sore throat, a urinary tract infection, a sinus infection, etc. When school was about to start, I felt better, and things seemed to be working themselves out. Seemed to be. I was wrong.
I just want to say this: You shouldn't wait for life to get better. You have to realize you can't have it all, and every once in a while, you're sure to experience a setback. I was always focusing on the future. Try instead to look at what you have in the here and now, and enjoy it. Be satisfied, and if you aren't, do something about it. I can't do anything about my life right now. I'm not in control anymore. If this hadn't happened, I would probably still just be sitting around waiting for college to start, because just like before, I would think that only then would things start to get better. Maybe this had to happen for me to open my eyes to reality? In any case I've gotten a new perspective on life. I just hope I get another chance.
Hanging out with friends.
A look back—Part 3
Sunday, January 4, 2009
I remember the chaotic weekend before I traveled to Trondheim. All I did was sit around anxiously waiting to leave. I spent the entire weekend with my mind spinning around in circles. I was so scared. The only certainty in my mind was that I was going to die. While I was waiting, I looked through old diaries. Somewhere I'd written, “Who knows what could happen in two years?” I was pretty freaked out, because I wrote that almost two years ago.
Today I took the diary out again, and read what I'd written. I get sad and angry when I read some of it, but some of it's well written, and makes me happy. It's almost as if it's written to me today. I might as well share some of it with you.
“Just thoughts”
(1/20/2006)
A lot of times I wonder why I'm here. What's the reason? I feel empty even though I'm full of feelings and thoughts. I'm drowning in loneliness. I have people around me who I enjoy, but do they really care about me? I sometimes think that if I died, no one would really care. Nothing would really change if I were gone. I'm just one life among many.
But even if you feel alone, there's always someone to help you get up when you fall. Loneliness is an interior pain that people always have to try to hide. No one can see the hurt. It's a superficial world we live in, too focused on exteriors. One should look at a person's inner beauty before anything else. Never judge anyone before you get to know him.
We're all searching for answers to the same questions. Is there anyone who has the answers? Does something exist outside this world that we can't sense and don't have the ability to know? In this endless universe everything is possible. Think of the possibilities and forget the doubt. Trust yourself, be yourself. I think that everyone should be able to think independently without being pressured by others. It's your own perspective that makes you who you are.
We're all hoping that there's something better, but focus instead on what you have now. Take care of your happiness and forget the sorrow. It's said that “it's better to be lucky than good,” that there's nothing better than being lucky. But what does it mean to be lucky? Infinity never ends.
All in all, 235 readers commented on Regine's three “look back” entries, among them several people with their own experience of illness. Here's a small selection.
You have nothing to fear (even though I understand that you are totally scared and frightened)! My mother had a heart transplant in 2007. I was terrified about what would happen, even though the procedure was pretty safe then and I knew that everything would go well. I was depressed the whole day, had to stay overnight with the neighbors (who I didn't really like), and I also had a math exam scheduled while she was gone. Maybe it's a bit presumptuous of me to write this, but I'm doing it so that you'll have a good precedent in mind: I took the math test for my mom's sake, because she wanted me to get a good grade, and I got my first A in math. Now she's in great shape, everything's going well, and she's happy with life. She was so happy to get a transplant! Imagine if you didn't get a transplant at all…
—Anonymous
Be strong! I went through the same thing that you're going through now when I was twelve. I was diagnosed with bone cancer. My life changed abruptly, but promise me that you'll never give up. That was the only thing I said to myself. I'm never going to give up and lose courage, no matter how horrible things get. Continue writing and talking about it; I think that can help you work through the hard times. You're a good writer. It's moving to read your writing. There are so many people who haven't encountered setbacks in life, and who have no idea what pain is, but I'll tell you one thing, that when I was sick, I felt everything was so unfair. I never understood why I had to be one of the unlucky ones. But I was, and that's the way it is. Something I just had to deal with and accept. But promise me that you'll never give up. I know this will make you stronger.
Take care of yourself and do things that make you happy, really.
—Henriette, eighteen
Amazingly good writing. I recognize so much about myself when I read about how you were in school. I always looked forward to middle school in elementary school, but I continued going to school and now I'm looking forward to moving away and studying. I have no idea what I'll do or what I'm going to do with my life, but after reading your blog, I've decided to focus. I'm going to be grateful that I'm well, that I'm happy, and I'll try and live life for the now. I hope you totally recover again—you really deserve it! You are so incredibly strong!!
—Kamilla
I am so looking forward to when you get better, Regine. We're going to live in the present, party more, kiss boys, stand in front of the mirror and say how totally gorgeous we are, and dream about a fabulous and 100 percent realistic future! It's going to be great!
—Karina
Hi, Regine. Some words from on
e of your old teachers at Nordlandet Middle School. ☺
You were a girl who made an impression on me: You were strong, and a wonderful and talented writer even then. Remember in 10th grade how eager you were when you had an oral presentation on the book you were reading—I think it was Beatles or was it A Doll's House? In any case you were so enthusiastic, and you could have talked forever without losing our interest. You seemed to be a girl full of thoughts and reflections about both the book and life in general.☺
Then I heard that you'd gotten sick. It was so incredibly sad to find out. Today I've been reading your blog: your entries and all the comments. You have my total admiration. As do all the youth who give you comments along the way.
Somewhere you wrote: “Life is very important to me.” I want to say that you, Regine, are very important to life. Important to all of us who get to read your thoughts and to everyone who is close to you. Your blog shines with hope and love for life. And that's what I wish for you for the New Year.
—Hug, Berit R.
P.S.: It's so delightful to see pictures of you, Eli Ann, and Marthe and the others. I wish you lots of good times together. ☺
Baking, camping, and hanging out—good times and good memories.
1 In a bone marrow biopsy, small hollow needles are used to remove solid or liquid bone marrow tissue from the posterior pelvic bone for diagnostic purposes.
2 Acute myelogenous leukemia (AML) is a rapidly progressing bone marrow cancer in which abnormal, immature blood cells proliferate in the bone marrow and negatively impact the development of healthy blood cells. More information about AML is provided at the end of this chapter.
Regine's Book Page 4