Dear Teen Me: Authors Write Letters to Their Teen Selves (True Stories) (46 page)

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About the same time, I got some unexpected and shocking news. The whole time that all this was going on, the doctors had been trying to determine what subclass of AML I had. Apparently it was really hard to figure out, and they thought it had to be something pretty unusual. The answer came three weeks after I had my first bone
marrow biopsy. I had something called myelodysplastic syndrome (“MDS”).
³

MDS causes cells to function incorrectly; it makes the cells defective. I also have a defect in chromosome 7,
⁴which just developed randomly. No one knows why it happened. Technically speaking, it's not leukemia, but it's just as serious, and it creates the same symptoms and often gets treated the same way. Without treatment, the disease will eventually evolve into AML. MDS is a very rare disease, especially among younger people.

The doctors didn't think I needed more chemo because the disease wasn't progressing that quickly, but then one day, a doctor came in with a serious look on his face. The white blood cell count had gone up in a short period, so a new chemo cycle was urgent.

I was totally shocked.

To function, the body needs physical activity, and that was pretty much impossible considering how much pain I was in. I was lying down for so long that fluid collected in my lungs. The doctors thought antibiotics would help, but after a while, it just got worse. My lungs filled up with even more fluid and I had a lot of intense pain, and it became really hard to breathe. Things just got worse and worse, and pretty soon I had to be moved to the main intensive care unit. The
nurses there were competent and easygoing, but I had such severe pain that I had to take morphine and a type of sleep medicine. A drain was put through my chest wall to remove the fluid. But finally it became so difficult to breathe that I was put on a respirator. I lay there for four days. It was horrible when I finally had to wake up, since it felt like I was suffocating. The first thing I did was try to remove the tube from my throat. I couldn't speak. So frustrating. I tried writing but it didn't go well because of all the medication.

Because I had intestinal inflammation, they had to feed me intravenously. But then my stomach kept getting bigger and bigger, so they had to stop the intravenous food. I couldn't eat or drink anything.

Eventually I was put into the children's intensive care unit. I don't know quite what to say about that, but it was really bad. I couldn't move for about two to three weeks, and I couldn't eat any food at first either. Eventually I was able to start on some real foods, but I didn't really want anything, and only ate about two pretzels a day. My stomach couldn't handle any more. I was also shown to have E. coli in my blood
again
. I was so cold that I shook. Thankfully, the antibiotics helped a lot. Someone gave me ten times more sleeping medicine than I should have had—just by mistake—which is pretty shocking, and makes me worried. Luckily they figured it out in time. A lot of what happened in the unit could have been avoided—but I won't go into that too much.

When I was well enough, I was moved back to the children's unit for cancer and blood diseases. Finally, I thought, a better environment. I stayed there for a week before I could go home. It came as a shock that it was even a possibility. I hadn't been home for ten weeks. My doctor and nurse were really happy for me. So was I (to say the least!). It wasn't that easy to get home though, because my body was dependent on morphine. I had some serious withdrawal symptoms but managed to travel home anyway without too many problems.

Tomorrow I'm traveling to Oslo for an informational meeting in advance of the upcoming bone marrow transplant. A donor hasn't been found yet, but they're saying it won't be a problem to find one; it just takes a while. Meanwhile, I'll probably need to stay in Trondheim for chemo.

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.

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.

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