And Then I Got Cancer

I am currently receiving my second dose of Cytarabine. It only takes 4 hours this time, as opposed to 24 hours during the first round. The Fludarabine is the only new ingredient this time around, but I haven't been experiencing any side effects. What I have noticed is the higher dose of steroids that I'm on, and the higher dose of Ondansetron, the anti-nausea drug. I guess steroids can help boost appetite, which could explain why I ate almost an entire giant burrito that David brought me, followed by a strawberry protein smoothie. It was a notable day for hair. I'd been pulling out wads of hair and getting frustrated trying to pick up the long strands from my sheets and clothes with a lint roller. So first thing this morning, I snipped off four braids of hair. I was aiming for at least six, but I just didn't have enough hair left. Or dexterity for braiding. With the braids snipped off, I cut my hair singlehandedly. I don't mean I did it by myself, which is also t

Drs. McDermott and Gorden stopped by today and let me in on my latest test results. For one thing, the cytogenetic testing of the sample from my first bone marrow biopsy finally came back. This was the test we were waiting on to get a full picture of what specific mutations were in my leukemia cells. In addition to monosomy 7, I also have a KRAS mutation. And that's it. The KRAS mutation apparently doesn't make a prognostic impact. Monosomy 7 is still the only important factor in terms of survival odds and such. The other test they were talking about I didn't even realize they were doing. The pathologist was able to do some testing on the second bone marrow biopsy sample that specifically targeted currently dividing cells. There were 11 such cells, and they all had monosomy 7. They were all cancerous. So basically, the leukemia is definitely still there. And because they have such a clear sign that the leukemia is still there, I get to start another round of chemo right

People keep asking me if I'm getting bored in the hospital. And yes, it's a fairly boring place. But I have all kinds of things to do here. I have many electronic devices, skeins of yarn, several books both on my kindle and in the flesh, coloring books and pencils and pens, and wigs to try on. But I've found that my attention is generally monopolized by my body. Besides being generally exhausted to the point where I need a nap after coloring for five minutes, there's also a new symptom every day to try and understand and cope with. One day it's a hemorrhoid. The next day, and actually every day lately, it's pulling out wads of hair from my head. And a couple days ago I noticed something new. Bone pain. At first it just felt like a soreness. Walking around with Brent on Monday I felt like leg day was a few days past but I worked out so hard I got that really achey residual soreness. I don't actually have a "leg day," but that's how I imagine

If you're reading this one, then I'll just assume you'd like to know about my headaches and hemorrhoids. I won't censor myself, but I can do my best to disclaim. I'd been asking to see a Neurologist since before my diagnosis. My headaches seemed mysterious. They weren't like anything I've had before. They were sudden, pounding, worse when I moved my head, and made me feel nauseous sometimes. The Hem/Onc team thought my headaches could very well be attributed to the leukemia, but two lumbar punctures later and they can pretty much confirm the cancer hasn't spread to my CNS. They acknowledged that the headaches could be completely unrelated. When I didn't have a headache for about a week while I was here, I stopped worrying about it. But when they came back, I started worrying about it again. The Neurology team came by yesterday, on three separate occasions. First a couple medical students. Then the medical students were accompanied by their resid

On Saturday I took Elizabeth and Brent to see my favorite hospital gazebo. The gate was locked again, but Elizabeth broke in because she's a gangster. Everyone needs a gangster on their team. We walked around and looked at the trees and birdhouses, and sat in the gazebo as the sun started to go down. My hair has been falling out, very gradually. I get more hairs in my brush, and every time I run my fingers through my hair I'll get a small handful. Since I had all these stray hairs, we thought it'd be a good idea to leave them in the bushes for the birds to use in their nests. Cycle of life, right? Depositing my extra hair in the bushes We ended up moving all the hair from the bushes to one of the birdhouses. It almost formed a perfect nest already. Now I have a little bag where I'm collecting my stray hairs, so I can give them to the birds later. Maybe it's the wrong season for nest building, but at least I feel better not throwing it in the trash. It'

Friday night I got the chills. Shivering, teeth clattering, I asked for a warming blanket. Then another. Pretty soon I was bundled up under half a dozen blankets that came straight from the warmer. In an already warm room. My fever spiked to 102.5, but by then the doctor on call had been notified, antibiotics had been ordered, and I was hooked up to Dmitry once again. My temperature was back to normal after the first dose of antibiotics, and I threw those blankets on the floor, but the following day came with a slew of diagnostic tests. I had another set of blood cultures, with 40cc of blood taken out of me through a slightly larger than normal needle. I peed in a cup. A fancy machine was wheeled into my room and pointed at my chest for an X-ray. I get it. I get why I'm in the hospital now. Every day is different. Every day doctors are adjusting my treatment to what my body is doing. And every day I'm adjusting to a new situation. First I'm on chemo. I can't eat. I c