I have no idea what sort of symptoms I can attribute to my CML, but every physical problem I’ve had lately is making me jump. I haven’t been sleeping well, CML. I had some heartburn (cheeseburger and fries), CML. My back hurts, CML. My hands are dry, CML.
Of course, most of those things are probably just normal winter problems I’ve had every year, but I don’t know. And not knowing is the worst.
Anyone who has just been diagnosed with CML, I have one suggestion. Don’t start surfing for information right before you go to bed. It doesn’t help.
I’m having trouble sleeping lately (I wake up too much) and I’m sure it’s due to agitation and not knowing what’s next. My best sleep I’ve had since this started was the night after the hematologist confirmed my diagnosis.
Supportive friends (and family) are the best. What really put me at ease was the support of friends who have already survived cancer. It’s good to know that people get through this!
Thanks everyone.
Once again, I spent some time shoveling the snow, but I also had some fun yelling at the kids to get off the front lawn. Frigging kids.
It’s nice that friends keep calling to see if I’m OK, but how am I going to deal with this in my usual way (denial) if I have to keep describing what I’m doing? Heh.
And anyone reading this, we’re keeping this from my dad, who has memory problems anyway. This would all just freak him out, and he’d keep asking me what is happening. I don’t need that sort of trouble right now, and neither does he. Thanks.
I have Chronic Myelogenogenous Leukemia. They did the genetic tests on my bone marrow and found the Philadelphia chromosome. That means unless I do something about it, I’m dead in five years.
CML is treatable with Gleevec, the wonder drug from OHSU and my prescription costs $2000/month. Apparently, my insurance may cover some of it if my doctor approves it. I spent an hour at the pharmacy finding out that they had never heard of Gleevec and they didn’t have any of it. Plus, I have to wait for them to arm-wrestle with my medical insurance before they’ll order it. How nice.
Well, I still don’t have a job. What a nice year I’ve had.
So, New Year’s Eve and I’m diagnosed with leukemia. There’s a good chance I’ll get this medication that may prolong my life, but I probably shouldn’t drink beer while I’m taking it. I headed down to the pub for my “last” beer but they were closed. I hope next year is better.
It was “fun” going running today. It’s an out-and-back route, 1 1/2 miles on the road, the rest on a gravel road, and it’s uphill most of the first half. Foolishly, I tried to stay on the sidewalk on the way up and found the worst traction was ice on the sidewalk. The roads were mostly clear. Much of the run was on choppy ice, the kind that forms on churned up snow. And now it’s snowing again! What I like most about rain is that you don’t have to shovel it.
And this is my last day of diagnosis ignorance. Tomorrow I find out what the doctor has found out from all the blood draws and the bone marrow biopsy. Maybe my bone marrow is really cotton candy. Who knows?
It snowed last night (though it wasn’t supposed to) and as the kids were sledding across the street, I did what I usually do: shovel wet snow. My next-door neighbor thinks I’m a stick-in-the-mud, but I like getting the snow off the sidewalk. That’s my fun with the snow. Like most years, the snow was wet and heavy. Sledding was kind of hit-or-miss, too, since all the snow gets so slushy and the bottom of the hill becomes one big mud puddle.
It’s going to freeze tonight and that’s always a joy. All the slush becomes a nice slick surface, making travel nearly impossible. It’s supposed to be 23°F. My room has been warm all winter, so we’ll see if it’s nice and cold tonight.
I’ve spent the last few days reading online comics. I’ve always loved comics, and now here’s the list of comics I liked. Not all of them are appropriate for public viewing.
Yesterday I saw our former State Representative, Chris Beck, and I was thinking there’s a lot of things I do for friends that I wouldn’t do otherwise. I hate cold-calling, and I don’t really like getting anonymous phone calls, but I sat in a call center and made campaign calls for Chris. Why? Because he’s a friend (though not a really close friend) and he asked me to. I’ve worked on a yacht’s “sewage” system, sat in hospital waiting rooms, and driven around the airport for an hour all for friends. I certainly wouldn’t want to do those things for myself.
So, here’s something funny. My sister got a letter in Japanese, and wanted to see if I could read more of it than she could. I had my mom read it, but then I tried cutting and pasting it into “Sherlock’s” translator, Chinese characters and all. Here’s what it came up with:
It is dense, it is, it is, the impoliteness it does suddenly, it is Trico. Some days ago, message was done it was in my blog, is to be, every the ?, the reply without being the impoliteness, (only the impoliteness repeatedly it is, &) even from time before the that, being to have become coming, it does supereggplant somewhere viewing to, but it became present place first favorite blog, inserted in this day favorite finally and the stripe was. When so why you see carefully, you transfer and has entered even into there, is delightful you are surprised is. Thank you.
As for circumstance whether knowing you think, but somehow being able to return to knitting and blog, finally be able to communicate, it was on the ? body. Mutual 2003 was blog first year, but when I am lazy and the thing can keep continuing also next year, it is well and with thinks. Each time also supereggplant PC is initialized because you read in the pleasure, it may by all means and don’t you think? the insulator increases. If by the way it does not become inconvenient, as for Mariko being the house in either one you apply, also the ? ? is good, is? Is not Japan, is, don’t you think?.
So your good year!
I’m doing nothing but sit at home all day watching TV. It’s rainy and cold outside. I realized that this is NORMAL. It isn’t because I’m sick, it’s because it’s the holidays and it’s miserable outside. Everyone is out with their families and I’m just hanging out. I’d go down to the pub for a beer, but it’s POURING outside.
Ah, yes. I remember the last time I was unemployed in the winter. I’d only go outside to get a cup of coffee every day. So this is normal. Boring, but normal.
My friend called right after I got up this morning and dragged me out for a walk in the woods with his 6-month-old daughter. She was quite fussy towards the end of the walk, and it was because she was gassy. It made me wonder how old we were when we decided that passing gas is funny. I’m glad gas doesn’t upset me as much as little Thea, because my friend bought me dinner tonight that included garlic mashed potatoes. Garlic anything pretty much gets me going.
I spent most of the day helping my friend increase his couch-potato-ness by hooking up a dual-LNB to his new DirectTV converter/TiVo. There was some work involved, but now he’s probably going to be attached to his La-z-boy chair for good.
Merry Christmas to whoever is reading this, and I hope your holidays are going well. But it isn’t going all that well for everyone. My neighbor passed away this morning. My friend’s sister is in the hospital with the ‘flu and possible heart problems. There isn’t much I can do but try to be supportive.
But today, all I did was watch movies, movies, movies. Scrooge again, A Christmas Story, Vertigo, Arthur’s Perfect Christmas, and parts of something that seemed like a Korean kung-fu movie called Volcano High that was on MTV. I’ll get away from the TV tomorrow. (I have to help a friend fix his DishTV installation.)
I had the choice of watching A Christmas Story that added 38 minutes to a 82 minute movie, or It’s A Wonderful Life where they added 49 minutes to a 131 minute movie. Basically, it came down to watching the movie that they only show once a season instead of the movie that that’ll show repeatedly for 24 hours. And I already watched Scrooge from 1951, which is my favorite version of that story.
Yay for all the movies I’ve been watching. Parts of You Only Live Twice, and Thunderball, and even Diamonds are Forever.
And I kind of want to see Love, Actually, tomorrow.
I forgot to mention yesterday that my sister lives in Paso Robles, CA, where all the earthquake damage occurred and, sadly, two people died when a building collapsed. Fortunately, she’s fine.
Today I spent the day waiting for a friend to get out of day surgery. She was scheduled for a 2 or 3PM, but she didn’t get in until much later. The recovery time kept getting pushed out, and she finally got out after 9PM. I was hanging out with her husband (my buddy Greg) and her daughter Bridget and we were running out of ways to kill time. I hope those two don’t drive her crazy, since she has to stay off her feet for a couple of days.
Oh, and check out the online comic Achewood if you have some time. It takes a bit to get into (you’ll have to read a lot of strips before you get what’s going on) and it’s certainly not for kids, but I’m really enjoying it. For a simpler funny geek comic, I’d suggest Hackles.