At 1 a.m. my doctor emailed me to inform me that my scan had come back clear and that I could rest easy. Needless to say, I'm overjoyed. Happy beyond happy. It's the type of news that will sustain me until I go away at the end of the month and until I have to do this again in 90 days. Or as my friend Juliet says, "It's just four times a year. It sounds better that way". So, that's how I'll put it. 4 times a year for two years. Which sounds much better, she's right. Although I still have the back pain. The type that happens when I'm eating. It feels like general muscle soreness but one of my oncologist was like "Set up an appointment with the secretary and come in for tests." But the problem is that she's in SI and it takes over an hour to get there and I'd have to leave work early or not go to work and I don't feel like doing that anymore. I wish doctor's had more convenient hours. But I think I'll just find a specialist nearer my house. Cause it ain't worth it to travel all the way out there, particularly when she said, "Well, I'd like to examine you to make sure that where you're telling me the pain is, is where it is, location-wise" I was bewildered by that remark, because, uh, I'm pretty sure I know where it hurts BECAUSE I CAN FEEL IT! Giving her the benefit of the doubt, I thought she meant if it is bone or muscular but no she meant where I was saying it hurt. Maybe she knows something I don't and I shouldn't bad mouth her.
So for now, while I'm clear, I have to ask everyone that I know to pray and send good thoughts to someone that the Lymphoma organization set me up with as a buddy. She's so sweet & so positive and is having a bit of a rough time; and it sucks because she's one of the nicest people I've met in the recently. And I truly believe that the good wishes that I received from everyone are what allow me to train for a half marathon in September, learn how to surf this weekend & go to the mall (which I wasn't allowed to do on chemo). So if you're reading this, send all the hope and wishes over to Cranford, NJ.
Wednesday, June 09, 2004
Monday, June 07, 2004
My cat fell out of a window today. And then he was subjected to being in a standoff with the stray cats that live and create havoc in my backyard. Thankfully, by chance, my mother had been coming over today to drop off groceries. She noticed the cat didn't come running to the door as he always did. And then she noticed the screen was out of the kitchen window. She saw the cats that were hissing and growling and screamed "Coyote!" And apparently he reacted like "Help me!"
My mother rescued him and he's a little traumatized at the moment.
But why is this story important? Well, it's midnight and I have to get up crazy early for this test, but I'm having trouble sleeping. And I just keep thinking how amazing it is that this cat isn't even scratched or hurt or has anything broken. He fell two stories and he's still here. Which means that it's possible to pick yourself up and be okay after something that should've killed you. And which gives me a lot of hope about tomorrow.
My mother rescued him and he's a little traumatized at the moment.
But why is this story important? Well, it's midnight and I have to get up crazy early for this test, but I'm having trouble sleeping. And I just keep thinking how amazing it is that this cat isn't even scratched or hurt or has anything broken. He fell two stories and he's still here. Which means that it's possible to pick yourself up and be okay after something that should've killed you. And which gives me a lot of hope about tomorrow.
Tomorrow is my first post-cancer follow up test. A low-carb day, followed by no food after midnight then being in this place for two hours, assuming that they do everything on time (which they never do). And then a full-day of work and waiting for the results, which I’m hoping don’t take too long. I actually discovered something this weekend—I can no longer drink. I had a beer and a half, and was not only a little drunk but also woke up the next day not feeling well. I’ve become that girl. The one who has a bit of Coors’ Light (although I was drinking Summer Ale) and is dancing on tables and going to her friends, “OMIGOD I am so drunk”. Well, not that girl specifically, but that type of girl. I used to be able to drink a couple of beers, do a shot or two and be fine. I mean, I played Rugby. I guess I should be happy that I didn’t have this problem in college, because I definitely would’ve been left home on many occasion or had my Amstel switched out for an O’Dool’s by my friends who would be embarrassed of my behavior.
Being in the hospital was horrible. I hated it. That’s not to say that there were not amusing moments. They paired me up with a 90 year old, morphine addict who was surprisingly lucid given her age.
When we got there, and were put on an oncology floor, I was surprised that there were few nurses who could access my port. My mother sternly told the nurse manager that she did not want someone to “practice” accessing my port. The woman assured my mother that this would not be the case. And then they brought in a fairly new nurse, and three managers and a doctor to watch her access my port. At first they said that she had done this “loads of times”. It turns out it was the third time she had ever done it. I felt bad for the nurse, because she looked so scared and nervous but at the same time, I wasn’t very happy about being lied to by the nurses. It also wasn’t the first time that my mother would wind up staring the woman down with a smoldering anger behind her eyes.
The thing about hospitals is that I’m unsure how anyone gets better there. I slept a maximum of four hours a day, which I’m pretty sure is not helpful to my immune system. My mother stayed with me practically the whole time. She would catch her sleep on a “sleeper chair” at the foot of my bed. And I’m sure that she got little sleep as well, and it’s amazing that we didn’t kill each other at the end of it. I love her and all, but that tight of quarters for any amount of time, with anyone, and under such stressful circumstances really tests the limits of your patience and your ability to keep your annoyance to yourself.
The doctor’s had no idea what was wrong with me. They weren’t convinced it was PCP, although I had exhibited all the signs. The pulmonologist came in one day to discuss with me the options—I could go for a gallium scan which would almost definitively give them an answer or “We can shove a rubber tube up your nose and then down your throat and collect spewtum. It’s very invasive, and quite uncomfortable, and it might not even yield any results.” What the hell kind of choice was that…again? I opted for the gallium scan, particularly because the doctor presented it in such a way that was like “Cake or Death?” And it’s “Cake, please.”
Apparently I lit up like a Christmas Tree so yes, I had PCP. But they still wouldn’t say it definitely. But they treated me for it with Bactrim and Steroids and within hours my symptoms began to subside. There is a catch here though—the doctors, most of them, were completely confused as to why I had PCP. On normal regimens of CHOP, it was basically unheard of. So because they were so confused, they tested me for HIV and kept asking me if I was HIV Positive and not telling them. And they treated me like I was HIV+. I was so disheartened to know that they were so confused but also because they didn’t believe me.
My oncologist however was convinced it was PCP and told me from the beginning. How did she know when all these other docs were so confused? Ahh, the catch. When I went to Sloane-Kettering they told me that on the every two weeks of CHOP, they had seen a lot of PCP, so they were giving Bactrim as a preventative. Shocked, I passed this information onto my doctor, thinking she didn’t know. However, she did. Her answer as to why I wasn’t made aware of this: MD Anderson doesn’t give Bactrim as a matter of practice, so she didn’t. She put me at risk without telling me about it. I was so devastated and angry. It should have been my choice as to whether I could take the antibiotic. I almost died, because she didn’t feel it necessary to give me something that would’ve caused no real ill side effects.
The dying part. I forgot about that. The night that I was put on the Bactrim and steroids, I was also put into the ICU. My pressure was dropping fast and significantly, my Pulse Ox was at 88 and my pulse was racing above 145. They wheeled me up there and placed me into this room. I had an oxygen mask on. I had already begun to feel better and let me tell you—ICU is not a place for anyone aware of their surroundings. First, they started by placing all those cold, sticky things all over me. Then I was hooked up to every machine conceivable. Then, they told me anytime I needed to use the bathroom (a commode type of thing in the room with me) that I needed to buzz for the nurse. They sent my mother home. The front of the room is all glass, with a not completely helpful curtain across it. So once I had to pee, I called for the nurse. A nurse’s aide comes in and says “Okay, I’ll get you a bucket.” I panicked. What the hell did I need a bucket for. I could walk to the bathroom it was five feet away. I was like, no, no bucket please stop robbing me of my dignity. So, she allowed me to use the bathroom and shut the curtain (as much as it would go). Eventually I figured out that the wires would let me go all the way to the bathroom so I didn’t need to call the nurse. People’s vents were going off all night, there was screaming and crying and needless to say I didn’t sleep at all, even with Resterol (sic?) in me. The nurses were very rude. Apparently one of the doctors had called to find out of if I was there, and if I was okay, and they told her that they couldn’t say. Which seemed to make no sense to me because shouldn’t my doctor be able to find out if I was alive?. By five a.m. I had apparently drifted off. At six a.m. the phlebotomist came in to draw blood, and was grabbing my arm aggressively. I woke up enough to tell her that I had a port accessed and that they didn’t need to draw blood out of my arm (which was still sore from being injected at the gallium scan). She flipped out, telling me that only a doctor could draw blood. So they paged Dr. Doogie Howser (he literally looked nineteen) who said that he’d draw it later. The phlebotomist glared at me and told me she was writing “Patient refused blood-work” in my chart, which wasn’t true, but whatever. At seven o’clock I took myself off oxygen. I waited until nine to call my mother, growling into the phone to get me off the floor. By twelve I was back downstairs.
The best was when I asked the doctor why he had put me in ICU. He said, “Well, we didn’t know which way you were going to go. We needed you turn a corner. And here you are!” And then I regretted asking because I didn’t want to know that I had been near death at all. Because I hadn’t felt like I was dying. I would think that I’d have an inkling or an idea and the fact that I didn’t feel like that made me more nervous. It was the same thing as finding out you had cancer. I hadn’t felt well, but flu-like unwell, and did not feel like it was something as serious as cancer. And then to find out half the time there are no symptoms, it’s frightening to think that as your body is shutting down you’re mostly unaware that anything is so very wrong. And now, if I have a cough or a backache or anything that is generally just part of living, I feel like it’s a symptom of something far more insidious and that they’re going to turn to me and be like, “That backache that you thought was just from sleeping kind of weird is really your lymphoma returning.”
Because I was so susceptible to getting sick, my roommate had been moved out. She had caught a horrible cold in the hospital and they were worried that she’d get me sicker than I was. So for two days I had the room to myself, which was nice. My mother and I watched a lot of TV, which you had to pay $6 a day for. One night we watched “The Christmas Shoes”. Not being country fans, we weren’t truly prepared for this movie. I kept saying “Oh she’ll get a heart now” or “Those shoes can’t be it, they’re horrid” or “Rob Lowe dies and donates his heart” but that never happened and in the end, the kid gives his mom these horrible shoes on her deathbed and Rob Lowe doesn’t get divorced. It was such a horrible movie and we were looking at each other like, what kind of Christmastime crap is this! And then I got a new roommate. She was a few years older than me, and dying. It was horrible. The room was always quiet and I hated to walk by her bed on the way to the bathroom. But she didn’t want to be moved. She liked to be in the room with my friends and family coming back and forth and I really felt bed for her but I was afraid to go to sleep because she was so close to death and looked like she was going to code any minute. She also didn’t have a DNR, so I was petrified at what might happen. She refused treatments and to be intubated and she had so much trouble breathing that it would come out in raspy whisps of air and she would inhale gulps of air and cough and I just wanted to help her. I don’t know what ultimately happened to her, but I think she passed away. I hope it was peaceful.
Finally, on Christmas Eve, I was let out of the hospital. Apparently the doctor that was supposed to write my release two days prior, was in India for a month and no one had bothered to inform anyone else. So two extra days of watching bad t.v., and eating hospital food (or not eating it) because no one could write a friggin’ memo?
When we got there, and were put on an oncology floor, I was surprised that there were few nurses who could access my port. My mother sternly told the nurse manager that she did not want someone to “practice” accessing my port. The woman assured my mother that this would not be the case. And then they brought in a fairly new nurse, and three managers and a doctor to watch her access my port. At first they said that she had done this “loads of times”. It turns out it was the third time she had ever done it. I felt bad for the nurse, because she looked so scared and nervous but at the same time, I wasn’t very happy about being lied to by the nurses. It also wasn’t the first time that my mother would wind up staring the woman down with a smoldering anger behind her eyes.
The thing about hospitals is that I’m unsure how anyone gets better there. I slept a maximum of four hours a day, which I’m pretty sure is not helpful to my immune system. My mother stayed with me practically the whole time. She would catch her sleep on a “sleeper chair” at the foot of my bed. And I’m sure that she got little sleep as well, and it’s amazing that we didn’t kill each other at the end of it. I love her and all, but that tight of quarters for any amount of time, with anyone, and under such stressful circumstances really tests the limits of your patience and your ability to keep your annoyance to yourself.
The doctor’s had no idea what was wrong with me. They weren’t convinced it was PCP, although I had exhibited all the signs. The pulmonologist came in one day to discuss with me the options—I could go for a gallium scan which would almost definitively give them an answer or “We can shove a rubber tube up your nose and then down your throat and collect spewtum. It’s very invasive, and quite uncomfortable, and it might not even yield any results.” What the hell kind of choice was that…again? I opted for the gallium scan, particularly because the doctor presented it in such a way that was like “Cake or Death?” And it’s “Cake, please.”
Apparently I lit up like a Christmas Tree so yes, I had PCP. But they still wouldn’t say it definitely. But they treated me for it with Bactrim and Steroids and within hours my symptoms began to subside. There is a catch here though—the doctors, most of them, were completely confused as to why I had PCP. On normal regimens of CHOP, it was basically unheard of. So because they were so confused, they tested me for HIV and kept asking me if I was HIV Positive and not telling them. And they treated me like I was HIV+. I was so disheartened to know that they were so confused but also because they didn’t believe me.
My oncologist however was convinced it was PCP and told me from the beginning. How did she know when all these other docs were so confused? Ahh, the catch. When I went to Sloane-Kettering they told me that on the every two weeks of CHOP, they had seen a lot of PCP, so they were giving Bactrim as a preventative. Shocked, I passed this information onto my doctor, thinking she didn’t know. However, she did. Her answer as to why I wasn’t made aware of this: MD Anderson doesn’t give Bactrim as a matter of practice, so she didn’t. She put me at risk without telling me about it. I was so devastated and angry. It should have been my choice as to whether I could take the antibiotic. I almost died, because she didn’t feel it necessary to give me something that would’ve caused no real ill side effects.
The dying part. I forgot about that. The night that I was put on the Bactrim and steroids, I was also put into the ICU. My pressure was dropping fast and significantly, my Pulse Ox was at 88 and my pulse was racing above 145. They wheeled me up there and placed me into this room. I had an oxygen mask on. I had already begun to feel better and let me tell you—ICU is not a place for anyone aware of their surroundings. First, they started by placing all those cold, sticky things all over me. Then I was hooked up to every machine conceivable. Then, they told me anytime I needed to use the bathroom (a commode type of thing in the room with me) that I needed to buzz for the nurse. They sent my mother home. The front of the room is all glass, with a not completely helpful curtain across it. So once I had to pee, I called for the nurse. A nurse’s aide comes in and says “Okay, I’ll get you a bucket.” I panicked. What the hell did I need a bucket for. I could walk to the bathroom it was five feet away. I was like, no, no bucket please stop robbing me of my dignity. So, she allowed me to use the bathroom and shut the curtain (as much as it would go). Eventually I figured out that the wires would let me go all the way to the bathroom so I didn’t need to call the nurse. People’s vents were going off all night, there was screaming and crying and needless to say I didn’t sleep at all, even with Resterol (sic?) in me. The nurses were very rude. Apparently one of the doctors had called to find out of if I was there, and if I was okay, and they told her that they couldn’t say. Which seemed to make no sense to me because shouldn’t my doctor be able to find out if I was alive?. By five a.m. I had apparently drifted off. At six a.m. the phlebotomist came in to draw blood, and was grabbing my arm aggressively. I woke up enough to tell her that I had a port accessed and that they didn’t need to draw blood out of my arm (which was still sore from being injected at the gallium scan). She flipped out, telling me that only a doctor could draw blood. So they paged Dr. Doogie Howser (he literally looked nineteen) who said that he’d draw it later. The phlebotomist glared at me and told me she was writing “Patient refused blood-work” in my chart, which wasn’t true, but whatever. At seven o’clock I took myself off oxygen. I waited until nine to call my mother, growling into the phone to get me off the floor. By twelve I was back downstairs.
The best was when I asked the doctor why he had put me in ICU. He said, “Well, we didn’t know which way you were going to go. We needed you turn a corner. And here you are!” And then I regretted asking because I didn’t want to know that I had been near death at all. Because I hadn’t felt like I was dying. I would think that I’d have an inkling or an idea and the fact that I didn’t feel like that made me more nervous. It was the same thing as finding out you had cancer. I hadn’t felt well, but flu-like unwell, and did not feel like it was something as serious as cancer. And then to find out half the time there are no symptoms, it’s frightening to think that as your body is shutting down you’re mostly unaware that anything is so very wrong. And now, if I have a cough or a backache or anything that is generally just part of living, I feel like it’s a symptom of something far more insidious and that they’re going to turn to me and be like, “That backache that you thought was just from sleeping kind of weird is really your lymphoma returning.”
Because I was so susceptible to getting sick, my roommate had been moved out. She had caught a horrible cold in the hospital and they were worried that she’d get me sicker than I was. So for two days I had the room to myself, which was nice. My mother and I watched a lot of TV, which you had to pay $6 a day for. One night we watched “The Christmas Shoes”. Not being country fans, we weren’t truly prepared for this movie. I kept saying “Oh she’ll get a heart now” or “Those shoes can’t be it, they’re horrid” or “Rob Lowe dies and donates his heart” but that never happened and in the end, the kid gives his mom these horrible shoes on her deathbed and Rob Lowe doesn’t get divorced. It was such a horrible movie and we were looking at each other like, what kind of Christmastime crap is this! And then I got a new roommate. She was a few years older than me, and dying. It was horrible. The room was always quiet and I hated to walk by her bed on the way to the bathroom. But she didn’t want to be moved. She liked to be in the room with my friends and family coming back and forth and I really felt bed for her but I was afraid to go to sleep because she was so close to death and looked like she was going to code any minute. She also didn’t have a DNR, so I was petrified at what might happen. She refused treatments and to be intubated and she had so much trouble breathing that it would come out in raspy whisps of air and she would inhale gulps of air and cough and I just wanted to help her. I don’t know what ultimately happened to her, but I think she passed away. I hope it was peaceful.
Finally, on Christmas Eve, I was let out of the hospital. Apparently the doctor that was supposed to write my release two days prior, was in India for a month and no one had bothered to inform anyone else. So two extra days of watching bad t.v., and eating hospital food (or not eating it) because no one could write a friggin’ memo?
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