Pay up. Here's why: So I started this new drug right? It's supposed to be all revolutionary and hugely beneficial to leukemia patients. You won't lose your hair, and you probably won't vomit all the time. It only kills the bad cells! Oh yeah, and you might get a fever and violent chills. Oh yeah, and the site where we inject the drug might bruise and form an itchy rash. Oh yeah, and that rash might spread to your Entire Body. But hey, you're doing good things for science!
Today they upped my Campath dose to 30 mg's. I got the drug-induced fever once again this afternoon, but it was an hour later than on Wednesday, so my body is making progress. I knew what was coming too, so I took the Tylenol as soon as the chills started, and my fever didn't get quite as high. It took a while to break though, but I am finally back to normal. Ish. Oh wait no, no, not quite. See, my right leg started itching right around after dinner, as I was putting the finishing touches on my newest, awesome song. And then my left leg started to itch. I scratched them both for a bit, unthinkingly. And then I realized that, "Hey, my legs shouldn't be itching this much." So, I pulled up my pant leg, and sure enough, little, happy red welts had begun to form on my calves. I immediately dashed upstairs to put on shorts and a tank top to survey the damage. My thighs, the aforementioned calves, my forearms, my chest, and yes, even my face have fallen prey to the Campath Rash. So here I sit, covered in Calamine lotion and desperately trying not to scratch the hell out of my body. It's a good time. Actually, I'm pretty amused. Because of course this would happen. But hey, at least I'm not vomiting! And my dad is on his way with ice cream, so all things will be better in a few short minutes. And that was my Friday. Spectacular. Happy weekend from an itchy, red welt. Peace!
Friday, May 4, 2007
Wednesday, May 2, 2007
My gawd; I almost died.
Kind of. Actually, not really. But it's human nature to exaggerate, right? Again, not really. So here's the story: This past Monday, I began a new, experimental drug, Campath 1-H. Way back in December, I signed up to be a part of a clinical trial testing whether or not this drug works for patients with ALL. It is, I'm sure I've mentioned before, a specific drug, as opposed to nonspecific. It targets one type of cancer cell and Destroys It! Most of the other drugs just go around and kill any fast-growing cells. On Monday, I began Module D, four weeks during which I receive Campath three times a week. The plan was to start with three milligrams on Monday. Wednesday, today, I would receive 10 mg's, and Friday it would go up to 30 mg's. And then, for the next three weeks, I would be receiving 30 mg's of Campath three times a week. In short, a lot of Campath. A lot of clinic time too. The protocol dictates that I have to be monitored for two hours after the injection, which means a machine takes my blood pressure every 15 minutes for two hours. Incidentally, it's the weirdest feeling to have your bicep squeezed while you're asleep. Okay, so while this is all fascinating background information, it doesn't have a whole lot to do with my near-death experience.
Today, I woke up at 6:30, finally left the house around 7:30, and got to the hospital by about 8:45. They didn't have to draw my blood today, which was nice and sped up the process immensely. My nurse, Margaret, finally came to my chair to administer the shot. 10 mg's of Campath were injected into my belly fat, which is substantially less painful than most other places on the body. So that went well; I sat there for two hours feeling fine, occasionally getting my bicep squeezed by the handsome blue pressure cuff. There were no problems, no drug related complications. My mom drove us home, and I slept in the car. And then I got home. And immediately after I stepped out of our car, I got the chills. I put my huge, blue Culver sweatshirt on over my t-shirt and zip-up hoodie. I wrapped myself in my afghan, and I proceeded to climb into bed under five layers of blankets. Basically, I was cold. I lay shivering for about an hour, when I noticed that I was becoming hot. Extremely hot. I took my temperature, and sure enough, it was 100.6. Now, that may seem like a minor fever, but you don't have cancer. If you did have cancer (or if you were reading this) you would know that 100.6 is the breaking point for those who do have cancer. I called my nurse immediately. She told me to take two Tylenol and call her back in an hour, when hopefully the Tylenol would have kicked in. I did so, and I also grabbed another blanket for my bed. I got in bed, and started taking my temperature about every 15 minutes. It continued to climb. Over the course of an hour, my temperature went from 100.6 to 103.2. Once again, for a cancer stud, this is a bad thing. I finally called my nurse back, at which point my temperature had dropped to 102.6. The Tylenol had started working, as had the cool washcloth my mom had brought me. Basically, my nurse told me that it had been a drug-induced fever, and as long as it went down, I shouldn't worry too much. Not that I was worrying. No, I was more ignorantly afraid that my brain would explode, or whatever happens when you have a way-too-high fever. In closing, my fever has finally gone down. My temperature is almost back to normal, and I am only wearing jeans and a t-shirt. So, crisis averted.
And that was my day. I hope yours was --almost-- as exciting as mine. Happy Hump Day! With love from me to you.
Today, I woke up at 6:30, finally left the house around 7:30, and got to the hospital by about 8:45. They didn't have to draw my blood today, which was nice and sped up the process immensely. My nurse, Margaret, finally came to my chair to administer the shot. 10 mg's of Campath were injected into my belly fat, which is substantially less painful than most other places on the body. So that went well; I sat there for two hours feeling fine, occasionally getting my bicep squeezed by the handsome blue pressure cuff. There were no problems, no drug related complications. My mom drove us home, and I slept in the car. And then I got home. And immediately after I stepped out of our car, I got the chills. I put my huge, blue Culver sweatshirt on over my t-shirt and zip-up hoodie. I wrapped myself in my afghan, and I proceeded to climb into bed under five layers of blankets. Basically, I was cold. I lay shivering for about an hour, when I noticed that I was becoming hot. Extremely hot. I took my temperature, and sure enough, it was 100.6. Now, that may seem like a minor fever, but you don't have cancer. If you did have cancer (or if you were reading this) you would know that 100.6 is the breaking point for those who do have cancer. I called my nurse immediately. She told me to take two Tylenol and call her back in an hour, when hopefully the Tylenol would have kicked in. I did so, and I also grabbed another blanket for my bed. I got in bed, and started taking my temperature about every 15 minutes. It continued to climb. Over the course of an hour, my temperature went from 100.6 to 103.2. Once again, for a cancer stud, this is a bad thing. I finally called my nurse back, at which point my temperature had dropped to 102.6. The Tylenol had started working, as had the cool washcloth my mom had brought me. Basically, my nurse told me that it had been a drug-induced fever, and as long as it went down, I shouldn't worry too much. Not that I was worrying. No, I was more ignorantly afraid that my brain would explode, or whatever happens when you have a way-too-high fever. In closing, my fever has finally gone down. My temperature is almost back to normal, and I am only wearing jeans and a t-shirt. So, crisis averted.
And that was my day. I hope yours was --almost-- as exciting as mine. Happy Hump Day! With love from me to you.
Monday, April 30, 2007
Just another day in the life.
So, briefly and somewhat amusedly, the Boston Metro (a local, commuter paper) ran a story about me in their paper today. It's on page three, and there's even a lovely head-shot of yours truly. You can download the pdf file of today's paper HERE if you so desire. It's a super short article, but I was flattered the guy contacted me, and, considering his space limitations, I'd say it is a fine bit of journalistic profiling. So that was exciting.
While we're on the subject of publicity, or whatever, I have something I need to mention that I have been remiss in putting off. I was recently contacted by a woman who used to be my babysitter, which would have been quite a while ago. She, Amy, told me she was going to be running the Chicago Marathon with Team in Training, and she wanted to know if she could run it in my honor. Of course, I absolutely said yes. I was completely blown away by her asking me. Honestly, I think that is so cool! She's running one of the biggest marathons in the country, if not the world, she's raising money for a fantastic cause, and she's asking me if she can run in my honor. I mean, come on, how is that not awesome? From their website, Team in Training is "the world's largest endurance sports training program. The program provides training to run or walk marathons and half marathons or participate in triathlons and century (100-mile) bike rides. Since 1988, more than 300,000 volunteer participants have helped raise more than $700 million" to fight and cure leukemia and lymphoma; they are a subgroup of The Leukemia and Lymphoma Society. So, I am always cheering on Amy, especially now as she begins training for the marathon, which is in October. I think it's fair to say she is a huge inspiration to me, as I have always wanted to run a marathon, and she's doing it for such a great cause. Her page is HERE, if you want to follow her great progress in raising money for the Leukemia and Lymphoma Society. Woo, let's cure cancer! It's also motivation for me to strap on my running shoes again, although I don't think I'll be marathon-ready for at least a little while longer. So that's my exciting news for the day. I had to go in for chemo as well, but that was terribly unexciting. Nonetheless, it was a decent day. Happy Monday night from here. Pax.
While we're on the subject of publicity, or whatever, I have something I need to mention that I have been remiss in putting off. I was recently contacted by a woman who used to be my babysitter, which would have been quite a while ago. She, Amy, told me she was going to be running the Chicago Marathon with Team in Training, and she wanted to know if she could run it in my honor. Of course, I absolutely said yes. I was completely blown away by her asking me. Honestly, I think that is so cool! She's running one of the biggest marathons in the country, if not the world, she's raising money for a fantastic cause, and she's asking me if she can run in my honor. I mean, come on, how is that not awesome? From their website, Team in Training is "the world's largest endurance sports training program. The program provides training to run or walk marathons and half marathons or participate in triathlons and century (100-mile) bike rides. Since 1988, more than 300,000 volunteer participants have helped raise more than $700 million" to fight and cure leukemia and lymphoma; they are a subgroup of The Leukemia and Lymphoma Society. So, I am always cheering on Amy, especially now as she begins training for the marathon, which is in October. I think it's fair to say she is a huge inspiration to me, as I have always wanted to run a marathon, and she's doing it for such a great cause. Her page is HERE, if you want to follow her great progress in raising money for the Leukemia and Lymphoma Society. Woo, let's cure cancer! It's also motivation for me to strap on my running shoes again, although I don't think I'll be marathon-ready for at least a little while longer. So that's my exciting news for the day. I had to go in for chemo as well, but that was terribly unexciting. Nonetheless, it was a decent day. Happy Monday night from here. Pax.
Sunday, April 29, 2007
I'm alive!
I survived my first time driving by myself to Culver, IN. I feel I deserve a cookie. Or at the very least, a gold-star sticker. I wasn't alone in the car, but there were no parents sitting in the passenger's seat acting as back-seat drivers. So if for no reason other than making it to and from Indiana, this weekend was a success. But thankfully there were many more reasons why this weekend was a success. I saw old friends, old teachers, old haunts where I used to sit and ponder life. It occurred to me this weekend that I was terribly depressed during high school, and that now the school is shrouded in a foggy memory-bank of unhappiness. And it's funny because this recognition made me realize that I am no longer plagued by teenage or Culver-depression. The fact that I can recognize it and stare it down objectively signifies, to me at least, that I have grown up and out of depression. And I realize this smack dab in the middle of treatment for a terminal disease. My life and always will be completely against the grain. It was still difficult to be back there though and confronting all the memories. I guess I haven't moved on as much as I thought. But it made me so happy to see Dancevision, the dance group I was in for four years. I was also extremely glad to see my teachers, the people who, whether they knew it or not, probably got me through high school. So, good memories and questionable ones, but they are all me, which I accept. All told, I had a fantastic weekend. I'm so proud of my dance buddies; they've grown up so fast. Sniff. And since I know you're wondering, yes, I took pictures. I've put some of them online, HERE. Check them out! One day (I hope...) you'll have to pay money to see those babies, so enjoy them while they're free. And no, I'm not cocky... Well, it's going to be a long day tomorrow. New drugs! So, hopefully I will get through them and live to write all about it. Have a wonderful Monday, if such a thing is possible. Peace.
Friday, April 27, 2007
so, um...
I'm going on a very mini Vacation! Woo!! Tomorrow, a friend and I are driving back to my high school in Indiana, and we won't be home until Sunday night. I am super excited to be getting away. It is the spring performance of the dance group there, of which I was a member for four years. Good times, and I miss dancing so much. It'll be interesting to watch the performance, as opposed to dancing in it.
Okay, so here's the big news: I finally went on my date-ish. I met up with the guy I met at the concert; we had sushi for dinner, and then we played pool for a while. I haven't smelled this strongly of smoke in I don't know how long. Nothing better than secondhand smoke when you already have one disease. But it was a good time. It was nice to feel normal for a while, even if that feeling was fighting strongly with my self-imposed awkwardness at this being a first official meeting. But he's a super chill guy, so everything ended up being fine. And I only remembered I had cancer once I was back at home. So yay for making local friends. Otherwise, everything's great. I had a good day today; I'm looking forward to a great weekend. Enjoy yours as well. Pax.
Okay, so here's the big news: I finally went on my date-ish. I met up with the guy I met at the concert; we had sushi for dinner, and then we played pool for a while. I haven't smelled this strongly of smoke in I don't know how long. Nothing better than secondhand smoke when you already have one disease. But it was a good time. It was nice to feel normal for a while, even if that feeling was fighting strongly with my self-imposed awkwardness at this being a first official meeting. But he's a super chill guy, so everything ended up being fine. And I only remembered I had cancer once I was back at home. So yay for making local friends. Otherwise, everything's great. I had a good day today; I'm looking forward to a great weekend. Enjoy yours as well. Pax.
Thursday, April 26, 2007
Hey guess what!
This is officially my 101st post. Yesterday's was my One Hundredth post! Woo! That's quite a lot of posting, if I do say so myself. And yet, I have been keeping this thing for over four months. I don't understand how time works. Sometimes it feels like I just left Boston yesterday, and yet, I feel like I've been going through treatment forever. I am halfway finished with the chemo, but September seems so far away. I am not sure if time is moving slowly or quickly, if my days are rushing by or dragging. Both, I suppose. So much has happened to me, but then again, there are no really outstanding days that I can recall. There are hospital weeks and non-hospital weeks. I think I spent most of February sitting in my living room, wrapped up in a blanket and two sweaters. I'm still sitting in my living room, right now, wearing one sweater, but I have left my house today. Subtly, my life has changed. Today I volunteered at my job. I called in and picked up my prescriptions from the pharmacy. Oh yeah, and I also ate a tub of Ben and Jerry's ice cream. So much for not succumbing to eating for comfort's sake. But it was delicious, and I have no regrets. Well, maybe a little bit of regret... Eh, I'll go for a walk tomorrow. But so congratulations (B)log for passing this important benchmark. God only knows what I'll be saying at post 200 and how long it will take me to get there.
Also, I just want to mention for a little bit of shock value, that I was put on a new pill. It's called Valtrex, and it is an anti-viral medicine. Apparently viral infections will be a huge concern for me after I start a new type of chemo this coming week. So this pill: It is bright blue. I have to take it four times a day. I have to take four pills four times a day. I have to take it until I finish my chemotherapy. I have to continue it for six months after I finish treatment. Let's sum up shall we? For the next ten months, I will be taking four pills four times a day. Sixteen bright blue pills. If nothing else has or will test me throughout this adventure, remembering to take all these pills will. I'm thinking I'll buy a watch with a timer and set it to go off every three hours or something. That might work... Well, wish me luck with overcoming my absentmindedness! And do something ridiculous tomorrow. Peace.
Also, I just want to mention for a little bit of shock value, that I was put on a new pill. It's called Valtrex, and it is an anti-viral medicine. Apparently viral infections will be a huge concern for me after I start a new type of chemo this coming week. So this pill: It is bright blue. I have to take it four times a day. I have to take four pills four times a day. I have to take it until I finish my chemotherapy. I have to continue it for six months after I finish treatment. Let's sum up shall we? For the next ten months, I will be taking four pills four times a day. Sixteen bright blue pills. If nothing else has or will test me throughout this adventure, remembering to take all these pills will. I'm thinking I'll buy a watch with a timer and set it to go off every three hours or something. That might work... Well, wish me luck with overcoming my absentmindedness! And do something ridiculous tomorrow. Peace.
Wednesday, April 25, 2007
Today's Word of the Day =
Snuffling! At this very moment, there is a brown/grey rabbit snuffling through the shrubbery at the bottom of the fence in my back yard. I am desperately trying to make friends with these rabbits -- there are two of them -- but I feel my efforts are in vain. They want nothing to do with me. And soon, I'm sure, there will be a multitude of smaller rabbits snuffling around the vast world that is my backyard. Aww.
And for the cancer-curious, I would like to revisit a point I made in passing about a week ago. The anticipation is always substantially worse than the actual event. Case in point: today's bone-marrow biopsy. I was not looking forward to it a week ago. Last night, I didn't want to think about tomorrow, me, who is usually so forward-looking. This morning, I woke up at 8:30, giving myself ample time to shower before we had to leave for the clinic. 11:00 am, I check in at the clinic, all hyper from the three shots of espresso I had in my latte. By this time I'm freaking out a little bit. It doesn't help, either, that everyone at clinic always looks so unhappy. I guess they all have decent excuses though. People sitting in wheelchairs, the woman across from me in the waiting area wearing her mask, the woman down from me on the chairs totally passed out with mouth open and arm hanging down (I may or may not have been watching her, hoping she'd slide out of the chair...). But anyway, so they send me into the back room to get my blood drawn. Now, because of the study that I'm on, on the days they do the biopsies, I get extra blood drawn for study purposes. Ordinarily they draw about 10 cc's (two small tubes) of blood, and they draw it from my catheter; they don't stick me. Today, however, while I was sitting in the plastic chair waiting for my nurse, I noticed that there was a needle hanging out on the tray next to me. The needle that they stick into your vein to draw blood. And then I started counting the tubes lined up next to the needle. That they stick into your vein. There were eleven tubes. Eleven. And six of them were 10 cc's each. They all added up to about 85 cc's. (Incidentally, I think cc's are about the same size as mL's). So the nurse finally came over and told me they had to draw the blood from my arm to make sure there was nothing (no chemo) that would skew the results. So fantastic. Eleven tubes of blood from my arm. Grimace, grimace, and really, it wasn't bad at all. I mean, they draw a litre of blood when you donate blood. So mine was a piece of cake. But then I had to go wait for the biopsy. And wait. And finally they called my name. So I walked to a different back room... and waited. And anticipated. And then the Physician's Assistant showed up, marked the spot on my hip where she would be drilling, placed a support under my "lower belly" (i.e. my hips), and we waited for the lab technician to show up. Finally, after much dreading and a little bit of hopping around on my part, they did the stupid procedure. And it wasn't that bad. Some pain, some blood, but, of course, it was not as terrible as I thought it would be. Either way, I'm just happy to be finished with it. Mmm, so tomorrow's Thursday. Should be a good Thursday... Not too much waiting. Pax.
And for the cancer-curious, I would like to revisit a point I made in passing about a week ago. The anticipation is always substantially worse than the actual event. Case in point: today's bone-marrow biopsy. I was not looking forward to it a week ago. Last night, I didn't want to think about tomorrow, me, who is usually so forward-looking. This morning, I woke up at 8:30, giving myself ample time to shower before we had to leave for the clinic. 11:00 am, I check in at the clinic, all hyper from the three shots of espresso I had in my latte. By this time I'm freaking out a little bit. It doesn't help, either, that everyone at clinic always looks so unhappy. I guess they all have decent excuses though. People sitting in wheelchairs, the woman across from me in the waiting area wearing her mask, the woman down from me on the chairs totally passed out with mouth open and arm hanging down (I may or may not have been watching her, hoping she'd slide out of the chair...). But anyway, so they send me into the back room to get my blood drawn. Now, because of the study that I'm on, on the days they do the biopsies, I get extra blood drawn for study purposes. Ordinarily they draw about 10 cc's (two small tubes) of blood, and they draw it from my catheter; they don't stick me. Today, however, while I was sitting in the plastic chair waiting for my nurse, I noticed that there was a needle hanging out on the tray next to me. The needle that they stick into your vein to draw blood. And then I started counting the tubes lined up next to the needle. That they stick into your vein. There were eleven tubes. Eleven. And six of them were 10 cc's each. They all added up to about 85 cc's. (Incidentally, I think cc's are about the same size as mL's). So the nurse finally came over and told me they had to draw the blood from my arm to make sure there was nothing (no chemo) that would skew the results. So fantastic. Eleven tubes of blood from my arm. Grimace, grimace, and really, it wasn't bad at all. I mean, they draw a litre of blood when you donate blood. So mine was a piece of cake. But then I had to go wait for the biopsy. And wait. And finally they called my name. So I walked to a different back room... and waited. And anticipated. And then the Physician's Assistant showed up, marked the spot on my hip where she would be drilling, placed a support under my "lower belly" (i.e. my hips), and we waited for the lab technician to show up. Finally, after much dreading and a little bit of hopping around on my part, they did the stupid procedure. And it wasn't that bad. Some pain, some blood, but, of course, it was not as terrible as I thought it would be. Either way, I'm just happy to be finished with it. Mmm, so tomorrow's Thursday. Should be a good Thursday... Not too much waiting. Pax.
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