Thursday, May 10, 2007

I have reached a small crossroads.

Some people say that life is a road. Whether you live life with the destination in mind, or if you opt to live for the journey, is something that conflicts most people at one point or another. I'm not sure which dictum I subscribe to yet. I live in the present while thinking about where I'm headed. And I'm scared of what's ahead. I don't know what is going to happen to me tomorrow, much less five or fifty years from now.

But tomorrow. Tomorrow began yesterday. Yesterday, my white blood cell count was too low for me to receive my Campath injection. I received a hydration pack and the rG-CSF shot to help my counts come back up. I also saw my doctor. She told me that everyone is a little worried about me. Apparently, my reactions have gone above and beyond what is normal for this injection. My white cell count was not supposed to drop, especially into the neutropenia levels. So I was sent away from clinic with instructions to keep giving myself the growth-factor shot, drink lots of water, and come back on Friday. Today, Thursday, I grudgingly went to my volunteer job. Grudgingly because, basically, I felt like... well, I didn't feel well. Anywhoo, so I got home from work, ate some foodings, and settled down for my Thursday-night primetime. About 1/4 of the way into Grey's Anatomy, my doctor called. And she posed to me this option: I can choose to stop the Campath injections. The doctors are worried about how badly this is wearing me down, and they don't want me to get sick (haha). So she said I can stop it. No more tri-weekly chills and fever, no rashes, no unwelcome fatigue. But stopping it means I am stopping one more means of killing the cancer cells. What my doctor told me is that Campath, they think, works on the microscopic level. It kills any cells that may be invisible and hanging on, the ones that come back in five years, recurring in my spinal cord or brain. So do I think in the now, or do I consider the long-term consequences? The other thing is too, in terms of long-term, is if I do get sick or infected, that will delay my treatment. And, depending on which infection I get, I could just up and die now. Or option B may leave me with cancer cells floating through me, hiding behind bigger cells. So that's my dilemma. I'm leaning towards stopping the drug. I still have three more months of treatment, so there are plenty more opportunities to kill the cancer, hopefully. And right now, aside from getting an infection, my biggest concern is getting back to school in September, healthily. Anyway, so that's one of the many issues I've been tossing around lately. Hopefully everyone else's week has gone a bit more smoothly than mine. We'll see what tomorrow brings. Strength would be nice... Alright, peace.

Tuesday, May 8, 2007

And now for a little Perspective.

I have been in a relationship with cancer longer than I have with any guy. None of my previous so-called "relationships" have lasted much longer than three months. And now here I am, stuck with this most unwelcome suitor. It's five months today. It's not really a big deal in terms of tracking relationships. Usually it's the six-month anniversary that calls for a card or a chocolate rose or something. But for me, every month is significant because it is one more month that I have knowingly lived with cancer.

Lately, I have been thinking too much about relationships. Obviously, I am single. And I know there's nothing wrong with not being with one person for longer than three months. I mean, I am still only 20. In ten years, I'll be worried. But this current relationship I'm in is seriously hindering my ability to forge other relationships. As a 20-year old, I'm supposed to be getting wasted on the weekends, hooking up with some random guy, shaking off regrets and laughing at it the next day. Or my romantic ideal: reading in a coffee shop when someone approaches me who turns out to be not random or regret-worthy at all. Not that either of those have ever happened to me (coughcough), but we all maintain foolish ideals. Basically, I fear I'm missing out on a crazy, fun life where I can make mistakes but not be held accountable for them. I know I'll be back to school eventually, but it will be different even then. I am forever marked by cancer. The mark is invisible, and most people won't know unless I tell them, but I know it's always there. Meh. This Campath is messing with my head. I'm being overly self-pitying because pretty much all I've done the past few days is lie in bed; I've felt like crap. Once I get out and moving again, these silly musings will pass, and all will be well again. Until then, another shot tomorrow! Woo! I'm interested to see how the reactions will be. Look for an update. Peace.

Monday, May 7, 2007

Wazzzzup.

Remember those old TV commercials where the guys all called each other and said that? I think (maybe?) it was a beer commercial. It's funny how some things become big in pop culture, and others are just forgotten. I finally, last night, saw the "More Cowbell" sketch from SNL that was so huge almost ten years ago. They did it in either '98 or '99. That seems like such a long time ago, and yet, I still see people with t-shirts that say "more cowbell." I don't understand how a certain demographic of people can be so strongly influenced by what they see on TV. Which, I suppose, is why I didn't go into advertising.

Now that that is out of my system, I got my Campath injection today. The good news is that I didn't get the chills. I did, however, still get a fever. Also, my white blood cell counts are low enough that I am, once again, considered neutropenic. So it's back to the no fresh fruits and vegetables and stay away from people lifestyle. And my doctor is pretty upset: Apparently, if you're neutropenic, you're not supposed to get the injection. My nurse knew my counts were low, but she went ahead with the shot anyway. I know the biggest risk for me right now is infection, but I'm not exactly sure why that would stop them from giving me Campath. When I go back on Wednesday though, if my counts are still too low, they're withholding the drug. And really, that wouldn't be such a bad thing. I have no problem foregoing all of these stupid reactions. At least today my rash didn't pop back up. Otherwise, that's about it. I sat around, got my shot, sat around some more, came home and slept all afternoon, and now I'm going to bed. I feel terribly lazy, but I'm going to blame that on the drugs. Because I can. Hopefully tomorrow will be another good day. Cookies to anyone who knows what day tomorrow is... Alright, Peace.

Friday, May 4, 2007

Ten bucks says my life is more ridiculous than yours.

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!

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.

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.

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.