Saturday, January 20, 2007

Apparently it's Rasta night on my jazz station?

Chicago only has one good jazz station (sigh) and tonight, seriously, I think it's Rasta night. Or at least Reggae. Lots of wah pedalin, singing of lovin', dreadlocks, fightin' for freedom mon, Set us free, Oh Lord... I really wanted some mellow jazz to read in bed to. Oh well.

So today I was noodling around online, trying to see if you can find my (b)log by Googling various keywords - I came up short. I did, however, find this one guy's cancer blog. He's got the same thing I do (ALL) and is blogging about it. He was actually diagnosed exactly three months before I was. Cool. Anyway, his blog is pretty funny. He's in San Francisco at UCSF, and it looks like we're getting similar treatments. He has a lot more and longer hospital stays than my plan though and slightly different drugs. Anyway, it was weird reading the words of someone who's going through the same thing I am. Also, this dude has posted pictures of everything. There are pictures of his bone-marrow biopsies, which freaked me out. I looked at them and was just like, "Holy crap, that's scary looking." Because, when they're doing it to you, you don't know what it looks like. The needle is bigger than I thought. He also had pictures of his spinal tap. YAY. I get that in a week. Awesome. The other funny thing is that he wrote that his doctors approved "special brownies" because his painkillers weren't working all that well, and he needed something to keep his spirits up every once in a while. Only in California. Sheesh. If I even mentioned that to my doctors, they'd probably fall over and start twitching on the floor. My doctor freaked out when I told her I was driving by myself. Oh, and hey, is it alright if I consume pot brownies? K, thanks. Haha. But yeah. The other thing it made me realize is that I have been extremely lucky in terms of my reaction to the treatments. Knock on wood I guess, but really, nothing bad has happened to me. I feel back to normal now. I'm going to yoga tomorrow, and I'll probably work out before or after. I'm eating regularly (I had gum today for the first time since December!), and I feel totally healthy. Apparently, in reaction to one of the drugs, this guy's blood started clotting, specifically in his brain, causing severe and long headaches. Thank God, nothing like that has happened to me. And aside from the finger numbness, I've had no lasting or significant side-effects. Haha, I've got cancer, but I'm not sick. I hate telling people that I have cancer, because it sounds so much worse than it is for me. Oh well. I can only pray that my lack of reaction and awesome recoveries from the drugs keep happening these next six months. And I'm sure they will. There will be hell to pay if they don't; I'll be pissed. And on that most pleasant note, I'ma gonna head out for the evening. And by out I mean one foot to my super-comfy bed. Today was a good day. Oh, and I just want to say, in case anyone wasn't sure, Thank You so much to everyone who has offered me support and prayers. I know I'm doing so well partly because of you all and your kind thoughts. I appreciate them so much. And I don't know who all reads this thing now, but I want to hug each and all of you. Thanks for, for some reason unbeknownst to me, returning to my ramblings and for being freaking awesome. Have a spectacular Sunday with me and GO BEARS!

Thursday, January 18, 2007

And we're back!

With another scintillating and informative bout of verbal spewage from yours truly. Today I went back to the cancer clinic at UofC for another of the infamous bone-marrow biopsies. As I have noted, the results of this biopsy are as important as the first one they performed, which determined the extent of my leukemia. These results will tell us how well the first session of chemotherapy worked. If it worked, there should be no leukemia cells. If they detect the cells, then the treatment didn't work, and we need to discuss other treatment options. But we're pretty sure there should be no cancer cells left in my blood and marrow. So I now have one new incision hole and four more drilled holes in my hip bone. Sweet. After all this crap, you'd better believe I'll be...holey. HAH. Anyway.

So the other news is this: At the beginning of the treatment, the first time I met my team of doctors and nurses and they explained the treatment schedule to me, I signed up to take part in a leukemia study. The study involves an experimental chemotherapy drug for ALL patients, Campath-1H. Campath-1H is currently used for Chronic Lymphocytic Leukemia patients, and they know it works for them. The study is basically looking to see if the drug will work for patients with Acute LL, what I've got. Here's what's cool about this special little chemo drug: Remember how I said way before that my drugs were "non-specific?" That they don't target the cancer cells, they just target all rapidly multiplying cells? Well, Campath-1H isn't like that. It isn't like that at all. Campath is actually a manufactured antibody that can attach to specific cells and Destroy Them!. (So, technically, by definition, it's not chemotherapy. Because it's an antibody. Not a chemical.) And now here's the super cool thing about all cells: they have these little receptors on them that allow antibodies to attach to them. (I could actually go into a lot of detail here about the proteins and sugars on the surface of cells; each little receptor is individualized; the receptors on antibodies are specific to the receptors on matching cells; etc... But I won't. I took a class on all this stuff. I still have to take the exam for this class in the fall.) Anyway. Basically, there is a receptor called CD52 on some leukemia cells. Campath, the antibody, essentially has the matching receptor for CD52. It attaches to the leukemia cells and Destroys Them!. Not all patients have the receptors, so not everyone qualifies for Campath. It wouldn't do anything for them, except probably make them sick. So at the beginning of this, when the doctors did their first bone-marrow biopsy (see, this all ties together), they took an extra marrow sample and sent it to Ohio State University where it was analyzed and whatnot. They were looking for CD52. And I found out today that... I am "moderately positive" for the receptor! Hoo-rah. Meaning, greater than 10% of my leukemia cells they looked at had it. So what this means for me: I will be getting Campath-1H. My chemo treatments will be extended for one more month. Now, I will finish chemo at the end of July, beginning of August-ish. But it's yet another thing that they're sure will destroy the cells, if any are left when they give me the Campath. The main thing they don't know about are the side-effects. There are about two and a half pages of possible side effects, everything from fatigue to swelling to this super sweet infection called Cytomegalovirus. I mean, come on, that's a sweet name, even if it has occasionally killed people. Meh. So yeah. I am one of about 300 people taking part in this study across the United States. Rock on, science! I have to keep going for check-ups for the next 10 years, but hopefully their findings will help ALL patients. I'm sure they will. So that's what's up today. I wrote a lot. Haha, I'll send you a cookie if you read all of it. I'll send you two if you understood it all. Alright, pax from the girl with the throbbing bum in Chicago.

Wednesday, January 17, 2007

mmmm, sushi belly.

Sushi for dinner. Delicious. And then I made cookies. Even more delicious. In my belly. I had a great day today. Putzed around in the morning, made some phone calls about taking a class, called someone else about a job, signed up to go to a cancer house/group thing in downtown Chicago (more info about that once I go to the first meeting), ran some errands. And then I went to the gym where I met with a trainer and he came up with some good fitness goals for me. And then I got sushi for dinner, and then I made cookies. So, I mean, that's sweet. Too bad just about everything turned around on me. Looks like I'm going to have to change the date for the cancer house to a week later. Neither of the BU people I talked to e-mailed me back with the information I need for transferring credits. The woman hasn't called me back regarding the job. And if she doesn't call me back, I'm being discouraged to get a normal job anyway because my mom seems to think I shouldn't be around too many people at one time. This whole not being around people because I have nowhere to go and nothing to do shit is starting to kick me in the face, repeatedly. I'm sitting here right now, fully aware of the fact that I'm giving in to bad thoughts, that I'm letting the yellow, wrinkly, unhappy side of me take over. But I'm struggling right now. I am trying so d*mn hard here, to stay positive, to stay busy. But I need people. I need to be doing something with myself other than the dishes or the laundry or being in a gym with adults who are twice my age and older (there was one cute guy at the gym. Pretty sure he didn't see me). I am trying. I am trying, and tonight I am struggling. Alright. Enough of this. Tomorrow I get another bone-marrow biopsy. Good times in the clinic. Props to whomever's suffered through my gripings. I'll try not to let it happen too often. Tonight's just been a pain in my rumpus. Whatever. I'm going to go read me some Sylvia Plath. Words.

Tuesday, January 16, 2007


I feel like I did something relatively notable today, but I honestly cannot remember what. I remember thinking, "Oh sweet, this would totally make an awesome (b)log entry." (because that's how I occasionally think now. yes. I'm lame.) Now, however, I have no clue what it was. Balls. Um... So... I got a desktop calendar today... It's pretty cool... Keeping me organized... Yeah, that's all I got. Oh Yeah! Starbucks reinstated their Cinnamon Dolce Latte! It's possible that they've had it for a while now, and today just happened to be my first time back to Starbucks, but that's beside the point. That was my drink last winter, and I became terribly depressed when they dropped it in the spring. But now it's back, and I am so happy. I walked out of Starbucks gripping my steaming, frothy drink, took my first sip, and immediately burst into a gigantic grin at its glorious deliciousness. The woman who stopped at the Stop sign for me was probably pretty surprised by my sudden display of absolute, seemingly unfounded, joy in the middle of the crosswalk. Anyway, so that was by far the high point of my day. And it was freaking gorgeous here today. Clear blue winter sky, completely bright and beautiful everywhere. So my day was great. And I still feel fantastic. Splendid. Tomorrow I'm going to try and both get a job and see if BU will accept credit for a class from a community college here. Should be another exciting day. Woot, woot.

Monday, January 15, 2007

It's schnowing!

Well, it snowed all day. And it made me happy. You know what else made me happy? Today, I went to the gym. I didn't really do much. I went to an hour yoga class, which was great actually. I could do just about everything, and I felt all stretchy and good afterwards. And then I hopped on a treadmill, all excited about my good health. I did about a minute walk to warm up, and then I upped the speed. I got to about a nine-minute mile and ran for like two minutes. Haha. And then I hit the glaring red PAUSE button, struggling to breathe as I was pretty sure I was going to die. Awesome! The trainer actually came over to me and was like, "Are you okay?" I answered, "yeah, I was in the hospital for three weeks. I'm out of shape." He told me that I need to start easy and "let it come back to you." I wanted to tell him to please, "Bite me, I just wanted to see if my legs even remembered how to run." Needless to say, I was angry, mostly with myself, for showing just how weak I've become. Then I walked for ten minutes. haha, walk it off. But I felt great after I'd gotten my breath back. Woo! I can kind of run! Anyway though, I got a gym membership. I've got a meeting set up with a trainer on Wednesday to figure out some sort of workout. I don't really need it, but it's free when you sign up, so, meh, why not. I'm excited to start getting back in shape.

I also went for a walk in the snow today with my camera. I put some of my pictures up on Facebook. It felt great to be walking around outside, in the snow, with my camera. As of now, I feel pretty much back to normal. As in, no pain, no nausea, appetite's normal, energy's high, strength is high, all that fantastic stuff that usually means you're healthy and most people just completely take for granted. Heck yes. Cancer: you can kiss my skinny butt. The only sad thing is that BU starts class tomorrow. I guess most people are sad because they have to go to class. I'm sad because I'm not. But, best not to think too much about it. I'll be back sooner than it seems. Woo. Let's go, Tuesday!

Sunday, January 14, 2007


So, freaking sweet day. The Bears beat the Seahawks! Heck yes! We're going to whomp (hopefully) New Orleans next weekend, and then it's on to Miami. Hahaha, I want to go to the game so badly next weekend, but yeah, pretty sure that's not going to happen. Tickets are either crazy expensive or way sold out. Oh well. It'll be chips and pizza for me next Sunday, plopped in front of my T.V. In other news, I pretty much felt great today. I didn't really do a lot in terms of moving, but meh. My mom and I drove to Milwaukee, Wisc. to drop off my younger brother's stuff at school. Incidentally, parents are allowed to order beer in restaurants for their kids in Milwaukee. Heh heh heh. Mmmm.... That was a welcome discovery. And the food was pretty good too. But yeah. I didn't feel nearly as tired as I've felt the past few days. My headache went away, and I just generally felt normal. Exciting. Otherwise, not much else to report. Tomorrow, we're supposed to have snow! I might have to walk to the park and take pictures or something. yay. Oh yeah, I've been having some seriously weird dreams at night. One night I dreamed my catheter was coming out of my chest, and I was freaking the hell out because I couldn't find a working phone to call my doctor. Another time my mom was yelling at me and I woke up crying. Another time all I can remember is that I drank the most delicious Guinness ever. The jury's still out as to whether or not I'm certifiably nuts or just really weird. Meh, I'll deal.