I'd like to say a restful weekend helped get me back on my feet but to be honest I've stopped trying to figure this out. I feel quite a lot better today. I have more energy, I feel more alert, and my cough has even relented somewhat. I managed to eat a little more over the weekend so maybe that has something to do with it, too. Hopefully it'll last at least until my next chemo treatment, and if it doesn't then I can deal with that, too. I have a long weekend coming up for Thanksgiving and I'm hoping that'll help me reset completely. I believe my next round of chemo is in early December so it'd be nice to have a little time feeling normal.
My friend Will up in Canada has delayed his next round by a week. His blood tests showed that he was just barely within normal platelet levels so they want to give him some more time to recover. The fact that his chemo could still have that much of an impact on him after three weeks might help explain why I'm still fighting symptoms even this far out myself. Even with my delayed symptoms, he's still taken it harder than I.
Right now, it's Sam I'm most worried about. I mentioned him way back in the beginning, as a close friend and co-worker, the first person I told and one who's been supportive this entire ordeal. Well, he's started having some problems himself. His wrist has bothered him for a long time but his doctor said that was carpal tunnel. He's recently been seeing a cardiologist for heart murmurs. Then today, he has a visual disturbance in his left eye, what he described as a "black donut" that appears around whatever he's looking at if he focuses hard enough. It's a terrifyingly familiar symptom. It's typically caused by pressure on the retina, but that can be caused by all sorts of things. He has a family history of glaucoma, for instance. It sounds terrible to wish a disease like that upon a friend; I just don't want him to have brain cancer. Thankfully he's being very pro-active about it. It started this morning and he already has an appointment with an opthamologist. Dr. C. recommended a neuro-opthamologist to me so I'm going to get Sam his contact information as well, just in case.
And if it turns out to be something serious, well, he's been there for me. I'd return the favor in an instant.
Showing posts with label brain surgery. Show all posts
Showing posts with label brain surgery. Show all posts
Monday, November 21, 2011
Monday, November 14, 2011
I don't know what's wrong with me.
I'm still not back to my usual self, whatever that even means anymore. I don't feel like I'm here. My mind is fuzzy and things don't seem real to me. It's like things move differently. I feel quiet and subdued, and when I try to speak my words feel like rambling or muttering, or don't come out at all. I'm having trouble hearing and understanding people. I've had quite a lot of sleep lately, though not only for my fatigue. It's one of the only ways I can stop coughing.
What my pulmonologist diagnosed as post-nasal drip has been driving me nuts lately. I can't stop with this sharp, unproductive cough. Sometimes it gets so severe I nearly vomit. If I rest on either side it'll fade and eventually stop over the course of about ten minutes, but even rolling over is to roll the dice. Sometimes it disturbs things and I start coughing all over again. I'm getting desperate. I need to find a way to treat this, even if it means injections to figure out exactly what's triggering it, then more to desensitize me to it.
I wonder how much of my suffering is from malnutrition. For days, I've suffered the two-pronged attack of having absolutely no appetite, yet occasionally suffering intense hunger pains. It's a strange sensation, to feel that hungry, yet to be unable to bring oneself to each more than a mouthful or two of anything. I've found popcorn and rice cakes to be ideal. They're light enough that I can usually get a fair amount down, and their dry, crispy texture scrapes the mucus from my esophagus, giving me a temporary reprieve from the coughing.
I'm starting to understand why some cancer patients turn to marijuana. I've never smoked it myself, though I've smelled it wafting out from under dorm room doors countless times and attended at least one party where the air was thick with the stuff. These days I could use something to give my appetite a little kick start. And my mood, too.
What I really need is something to help me focus. I nearly killed myself the other night, driving down some unfamiliar roads. It was very dark, and while I saw a stop sign it was in an odd position and angled strangely enough to confuse me as to which fork in the road was the primary. Had I been any slower on the brake, I would have been T-boned. Instead all I got was a well-deserved honk, and a reminder that perhaps I shouldn't be out driving so late. Especially when I'm still suffering from a sensitivity to light. I swear there's a special place in hell for people who never turn off their high-beams, or have improperly calibrated high-intensity headlights.
I recall speaking to my co-workers about headlights earlier this year. I told them that I could swear they were getting brighter every year. I even wrote a letter about it to my congressman. It got so bad I bought a pair of sunglasses to wear on busy roads. Of course now I see that for what it really was: a symptom, not an observation.
At times, I wonder if any of them recall those brief conversations. I wonder if they too now understand that they were signs of a much bigger problem. I remember the severe stomach pains my co-worker used to feel, for months before he was diagnosed with pancreatic cancer.
But I can't start with the "what ifs." I can't blame myself for not seeing the signs. That's a path down which I can't go. For you see, it wasn't always just subtle symptoms, little nudges toward a terrible truth. Sometimes it was something I - were I a more spiritual person - might consider paranormal insight.
For my entire life, I've gone through the paces. I went to school as I was supposed to. Then college. Then I got a job. My quote in my high school year book bemoans this inevitable cycle: studying to get into college, so we can get a good job, so we can work long enough to give ourselves a few years to live before we die. Even so, I never actually felt that my life would turn out like that. I had this inexplicable notion that my preparation, my savings, all of that would be for nothing. Now, given, I had expected the problem to be of a global scale rather than personal. The collapse of the economy, or of America. Some sort of apocalypse. Nuclear war. Not something as mundane - insignificant - as my early death.
More telling is an old fear of mine. When I was young (single-digits) young, I was terrified of cancer. Especially brain cancer. I thought the only thing worse than your body turning against you would be your body devouring your mind as it does so. There was nothing more frightening to me than the idea of watching your own mind - your own self - fade away. I carried that fear long enough that that Flowers for Algernon story we've all read struck a chord with me.
Still, that fear faded over time, such that there was none of it left by the time I got my diagnosis. I suppose actually having brain cancer is scary enough as it is.
What my pulmonologist diagnosed as post-nasal drip has been driving me nuts lately. I can't stop with this sharp, unproductive cough. Sometimes it gets so severe I nearly vomit. If I rest on either side it'll fade and eventually stop over the course of about ten minutes, but even rolling over is to roll the dice. Sometimes it disturbs things and I start coughing all over again. I'm getting desperate. I need to find a way to treat this, even if it means injections to figure out exactly what's triggering it, then more to desensitize me to it.
I wonder how much of my suffering is from malnutrition. For days, I've suffered the two-pronged attack of having absolutely no appetite, yet occasionally suffering intense hunger pains. It's a strange sensation, to feel that hungry, yet to be unable to bring oneself to each more than a mouthful or two of anything. I've found popcorn and rice cakes to be ideal. They're light enough that I can usually get a fair amount down, and their dry, crispy texture scrapes the mucus from my esophagus, giving me a temporary reprieve from the coughing.
I'm starting to understand why some cancer patients turn to marijuana. I've never smoked it myself, though I've smelled it wafting out from under dorm room doors countless times and attended at least one party where the air was thick with the stuff. These days I could use something to give my appetite a little kick start. And my mood, too.
What I really need is something to help me focus. I nearly killed myself the other night, driving down some unfamiliar roads. It was very dark, and while I saw a stop sign it was in an odd position and angled strangely enough to confuse me as to which fork in the road was the primary. Had I been any slower on the brake, I would have been T-boned. Instead all I got was a well-deserved honk, and a reminder that perhaps I shouldn't be out driving so late. Especially when I'm still suffering from a sensitivity to light. I swear there's a special place in hell for people who never turn off their high-beams, or have improperly calibrated high-intensity headlights.
I recall speaking to my co-workers about headlights earlier this year. I told them that I could swear they were getting brighter every year. I even wrote a letter about it to my congressman. It got so bad I bought a pair of sunglasses to wear on busy roads. Of course now I see that for what it really was: a symptom, not an observation.
At times, I wonder if any of them recall those brief conversations. I wonder if they too now understand that they were signs of a much bigger problem. I remember the severe stomach pains my co-worker used to feel, for months before he was diagnosed with pancreatic cancer.
But I can't start with the "what ifs." I can't blame myself for not seeing the signs. That's a path down which I can't go. For you see, it wasn't always just subtle symptoms, little nudges toward a terrible truth. Sometimes it was something I - were I a more spiritual person - might consider paranormal insight.
For my entire life, I've gone through the paces. I went to school as I was supposed to. Then college. Then I got a job. My quote in my high school year book bemoans this inevitable cycle: studying to get into college, so we can get a good job, so we can work long enough to give ourselves a few years to live before we die. Even so, I never actually felt that my life would turn out like that. I had this inexplicable notion that my preparation, my savings, all of that would be for nothing. Now, given, I had expected the problem to be of a global scale rather than personal. The collapse of the economy, or of America. Some sort of apocalypse. Nuclear war. Not something as mundane - insignificant - as my early death.
More telling is an old fear of mine. When I was young (single-digits) young, I was terrified of cancer. Especially brain cancer. I thought the only thing worse than your body turning against you would be your body devouring your mind as it does so. There was nothing more frightening to me than the idea of watching your own mind - your own self - fade away. I carried that fear long enough that that Flowers for Algernon story we've all read struck a chord with me.
Still, that fear faded over time, such that there was none of it left by the time I got my diagnosis. I suppose actually having brain cancer is scary enough as it is.
Tuesday, November 8, 2011
Turns out I'm just grumpy, entitled, and possibly elderly
In this revealing article, Jordan Rau notes the hospitals across the nation with the highest and lowest patient satisfaction rates. I'm going to tip my hand a bit and say that I was treated in Manhattan. Manhattan's rated in the bottom six (though that includes more than the hospital I attended).
Why don't you try it for a while, Rau?
No one has proof why New York does so poorly, but everyone has a theory. It could be all the old, cramped hospital buildings that make patients shack up in double rooms. It could be the cranky mix of lots of poor patients in especially bad health and wealthy, entitled patients. It could be the frenetic environment of teaching hospitals with a plethora of residents and specialists poking at patients.Well it's certainly true that the building itself isn't terribly comfortable but notice how quick Rau is to blame the patient. In fact, take a look at the opening line:
Not all hospital patients are alike. Some are harder to satisfy.Yes, that's right. It's not that I had to drink phlegm, or that I was turned into a human pincushion, or that I never got a moment's privacy. It's that I'm entitled, cranky, poor, wealthy, elderly, and eager to be nasty to people. Every hospital delivers completely identical care: it's the patient that's the variable.
Why don't you try it for a while, Rau?
Thursday, October 20, 2011
I am not a plot element
Before I begin, let me say that yes, I'm going somewhere with this, and no, I haven't seen 50/50 but I hear it's pretty good and based on the director's personal experience with cancer.
The media has done a tremendous disservice to cancer patients. I'm not talking about the news, or the "news," or the feel-good quasi-science of Dr. Oz, or the feel-good pseudo-science of Oprah. I specifically mean entertainment.
In movies, there are four kinds of cancer patients.
1) Part of the background in hospitals, their only function to fill a bed. Maybe that bed will be empty later if the director feels like being subtle and poignant.
2) Has something difficult to notice - often leukemia or lymphoma - ends up bald, acts a little tired or weak, but usually gets better and is a stronger person for it while their friends and relatives admire their strength and bravery.
3) Has lung cancer, which means they cough now and then and approach life with a "nothing to lose" attitude, but are otherwise perfectly fine.
4) Has brain cancer, which is shorthand for, "this person is going to die in the most horrible way imaginable and there is absolutely nothing anyone can do about it."
Needless to say, number 4 there strikes a particular chord with me. Specifically I recall The Green Mile, where a secondary character is given brain cancer for no reason other than to show that the Coffey can cure literally anything. There's a pun in there but I'm not in the mood. Haven't had my coffee. ...Dammit.
Other than the inherent fatalism involved, I don't like the media's portrayal of brain cancer. I don't know if they've ever shown a brain cancer patient with anything but the most distorted, fleeting moments of anything even resembling clarity. Other than that they're all delusions and screaming in pain. And let's be clear, there are people who end up like that. This is a disease that consumes the brain. But it typically doesn't happen nearly so fast.
Brain cancer patients often have a remarkably high quality of life, followed by a rapid decline before death. From what I've seen and heard, most brain cancers are discovered by accident. Think about that for a moment. That means that the cancer had so little impact that the patient didn't even realize they were sick. And after they've found out, I think we can all forgive a reasonable degree of bedridden screaming. But I picked myself up again. In fact, I skipped over the screaming entirely, which is actually something that's concerned me, and something I may address later. So sure, I may spend my final days breathing through a tube, unaware of who or where I am, clawing at imaginary phantoms. Or I might not. I'm not doing that right now. Right now, I'm living on my own, I'm working full time, and I'm continuing my life.
A bigger problem, one that applies to all forms of cancer, is the media portrayal of chemotherapy. As I mentioned before, I was very reluctant to go with chemo. That's because I was terrified of it, as are most people. In movies, they depict chemo as bringing the patient as close to death as possible, so that they may avoid actual death for a little while longer. They lose all their hair, all their color, and all their weight until they look like little more than a skeleton. They lack the strength to stand, or speak, or even hold up their head. They constantly vomit, and have tubes surgically implanted into their chests to make it easier to pump them full of poison on a near-daily basis.
And don't get me wrong, there are people who must endure exactly that. I've come across a few, in the same hospital, seeing the same doctors. My heart truly goes out to those people, and I can't imagine trying to live like that. I can't imagine that they can. However, that's only the most extreme form of chemotherapy. There are much lower doses. Up until I met with Dr. Cancer, I didn't even know there was such a thing as orally administered chemotherapy. More importantly, I didn't know that there are other medications given in tandem with chemotherapy that can completely negate many of its worst effects. I took 165mg of chemo every single day for 45 days, along with a Zofran to counteract the nausea, and a stool softener to help with the constipation caused by the Zofran. I didn't get the slightest bit nauseous. The worst I suffered from that was a little stomach pain now and then. I was fatigued, but not so fatigued that I couldn't continue to work, and I did work, all the way through my treatment.
That's not to say that taking chemotherapy - even a low dose - isn't scary. The tablets look like serious medication; little two-colored capsules marked simply, their contents loose and rattling. The bottles came in a bag marked with a huge biohazard symbol. The bag included instructions for any caregivers to administer the medication to wear gloves, and never allow the capsules to come into contact with their skin. And I had to swallow them.
There are also plenty of risks and restrictions while taking chemotherapy. It attacks all replicating cells in the body, including healthy ones. Wounds heal very slowly, or not at all, the immune system is compromised, white and red blood cell counts drop; I wasn't even allowed to shave with a razor. Taken in high enough concentrations for a long enough period, it can kill bone marrow and cause leukemia. It saturates the body. I could smell it in my sweat. Dr. Cancer told me that if I had unprotected sex, I'd give my hypothetical lady friend a dose of chemo. It isn't always as bad as it is in movies, but make no mistake. It is poison. Its purpose is to attack the body. I know that it helps and I never regretted taking it, but every time I swallowed another pill I just knew there had to be a better way. If only we could find it.
Of course, I wasn't the only person mislead about chemotherapy. My image was a common one. So common, in fact, that most people seem to equate cancer with severe chemotherapy. People kept telling me how good my color was, and how healthy I seemed. They can see the hair I still have in the back of my head, below my bandana (one that I wear for a very good reason). They think that since I look healthy, I must be healthy.
Some free advice to any caregivers and well-wishers: do not ask a cancer patient if they're going to be all right unless you're absolutely sure they will be, or if you're ready for an honest answer. I still hold on to the hope that some day I may be healthy. Right now, I have brain cancer.
So the chemotherapy wasn't nearly as bad as I'd expected or been lead to believe.
If only I could say the same about the radiation.
The media has done a tremendous disservice to cancer patients. I'm not talking about the news, or the "news," or the feel-good quasi-science of Dr. Oz, or the feel-good pseudo-science of Oprah. I specifically mean entertainment.
In movies, there are four kinds of cancer patients.
1) Part of the background in hospitals, their only function to fill a bed. Maybe that bed will be empty later if the director feels like being subtle and poignant.
2) Has something difficult to notice - often leukemia or lymphoma - ends up bald, acts a little tired or weak, but usually gets better and is a stronger person for it while their friends and relatives admire their strength and bravery.
3) Has lung cancer, which means they cough now and then and approach life with a "nothing to lose" attitude, but are otherwise perfectly fine.
4) Has brain cancer, which is shorthand for, "this person is going to die in the most horrible way imaginable and there is absolutely nothing anyone can do about it."
Needless to say, number 4 there strikes a particular chord with me. Specifically I recall The Green Mile, where a secondary character is given brain cancer for no reason other than to show that the Coffey can cure literally anything. There's a pun in there but I'm not in the mood. Haven't had my coffee. ...Dammit.
Other than the inherent fatalism involved, I don't like the media's portrayal of brain cancer. I don't know if they've ever shown a brain cancer patient with anything but the most distorted, fleeting moments of anything even resembling clarity. Other than that they're all delusions and screaming in pain. And let's be clear, there are people who end up like that. This is a disease that consumes the brain. But it typically doesn't happen nearly so fast.
Brain cancer patients often have a remarkably high quality of life, followed by a rapid decline before death. From what I've seen and heard, most brain cancers are discovered by accident. Think about that for a moment. That means that the cancer had so little impact that the patient didn't even realize they were sick. And after they've found out, I think we can all forgive a reasonable degree of bedridden screaming. But I picked myself up again. In fact, I skipped over the screaming entirely, which is actually something that's concerned me, and something I may address later. So sure, I may spend my final days breathing through a tube, unaware of who or where I am, clawing at imaginary phantoms. Or I might not. I'm not doing that right now. Right now, I'm living on my own, I'm working full time, and I'm continuing my life.
A bigger problem, one that applies to all forms of cancer, is the media portrayal of chemotherapy. As I mentioned before, I was very reluctant to go with chemo. That's because I was terrified of it, as are most people. In movies, they depict chemo as bringing the patient as close to death as possible, so that they may avoid actual death for a little while longer. They lose all their hair, all their color, and all their weight until they look like little more than a skeleton. They lack the strength to stand, or speak, or even hold up their head. They constantly vomit, and have tubes surgically implanted into their chests to make it easier to pump them full of poison on a near-daily basis.
And don't get me wrong, there are people who must endure exactly that. I've come across a few, in the same hospital, seeing the same doctors. My heart truly goes out to those people, and I can't imagine trying to live like that. I can't imagine that they can. However, that's only the most extreme form of chemotherapy. There are much lower doses. Up until I met with Dr. Cancer, I didn't even know there was such a thing as orally administered chemotherapy. More importantly, I didn't know that there are other medications given in tandem with chemotherapy that can completely negate many of its worst effects. I took 165mg of chemo every single day for 45 days, along with a Zofran to counteract the nausea, and a stool softener to help with the constipation caused by the Zofran. I didn't get the slightest bit nauseous. The worst I suffered from that was a little stomach pain now and then. I was fatigued, but not so fatigued that I couldn't continue to work, and I did work, all the way through my treatment.
That's not to say that taking chemotherapy - even a low dose - isn't scary. The tablets look like serious medication; little two-colored capsules marked simply, their contents loose and rattling. The bottles came in a bag marked with a huge biohazard symbol. The bag included instructions for any caregivers to administer the medication to wear gloves, and never allow the capsules to come into contact with their skin. And I had to swallow them.
There are also plenty of risks and restrictions while taking chemotherapy. It attacks all replicating cells in the body, including healthy ones. Wounds heal very slowly, or not at all, the immune system is compromised, white and red blood cell counts drop; I wasn't even allowed to shave with a razor. Taken in high enough concentrations for a long enough period, it can kill bone marrow and cause leukemia. It saturates the body. I could smell it in my sweat. Dr. Cancer told me that if I had unprotected sex, I'd give my hypothetical lady friend a dose of chemo. It isn't always as bad as it is in movies, but make no mistake. It is poison. Its purpose is to attack the body. I know that it helps and I never regretted taking it, but every time I swallowed another pill I just knew there had to be a better way. If only we could find it.
Of course, I wasn't the only person mislead about chemotherapy. My image was a common one. So common, in fact, that most people seem to equate cancer with severe chemotherapy. People kept telling me how good my color was, and how healthy I seemed. They can see the hair I still have in the back of my head, below my bandana (one that I wear for a very good reason). They think that since I look healthy, I must be healthy.
Some free advice to any caregivers and well-wishers: do not ask a cancer patient if they're going to be all right unless you're absolutely sure they will be, or if you're ready for an honest answer. I still hold on to the hope that some day I may be healthy. Right now, I have brain cancer.
So the chemotherapy wasn't nearly as bad as I'd expected or been lead to believe.
If only I could say the same about the radiation.
Tuesday, October 18, 2011
Survey Results
I'd like to take a step away from my little memoir for a moment as I have something more current for you today. I promise that tomorrow we'll return to the epic adventures of a 29-year-old man living with his parents.
Today I received the results of the investigation I mentioned, the one they initiated in response to my survey about my hospital stay. Let's take it point by point.
First of all, they note that their staff does try to monitor visitors while respecting each patient's desire and ability to receive guests. That doesn't really tell me much, other than that they knew what was going on and didn't act upon it. I suppose that's reasonable enough, given the circumstances. It's kind of cruel to tell a cancer patient they can't see their family or friends, even if that is a detriment to their roommate. Would have been nice to know their official policy on it, though. What does it mean to "monitor" something? They could have "monitored" someone trying to smother me with a pillow; doesn't really make a difference unless they take action on it.
They also informed me that they weren't required to give me a private room, which I know, and I understand that too. It seems to be more of a legal argument than a patient care one: you have no legal right to a private room so you have no recourse if we don't give you one. They go on to note that I could have paid extra to ensure a private room. Maybe they don't want to spoil us greedy patients with free privacy.
They note that they try to pair patients by gender and care needs, which makes sense to me as I was paired with another young man with cancer, who needed observation and some occasional routine care, same as I. I'm guessing that particular policy went out the window after they started moving me, as Mr. Liver was actively dying and I don't think I was doing quite that bad. I also don't think my medical needs (or gender) are similar to those of an old lady who wants ice cream.
Next a bit about the night nurse, the one who had me drink my own spit. He's sorry about that, and should have brought a filled cup from outside the room. They also inform me that when I was having trouble sleeping, he contacted my physician to get permission to give me a sleeping pill, but when he returned to my room he found me asleep and decided not to wake me.
I find that fascinating for two reasons.
1) When I'm trying to sleep, not even my own parents can tell that I'm not actually asleep. Furthermore every time a nurse entered my room to administer care I was awake and aware of them as soon as they entered the room.
2) That man must have a remarkable memory, or take very good notes.
No sleeping aid appeared on my invoice either, which was specific enough to include the exact date and cost of each individual treatment I received - from pills to blood glucose tests - though perhaps it wasn't listed because I never actually received the pill. Or maybe because that nurse is full of shit.
For my remaining complaints, the noise levels, my perpetually open door and the delay in response to my call bell... Sorry. They apologize for it, they regret it happened, but it doesn't look like they'll be doing a damn thing about it. They didn't even mention the alarms. Maybe they're worried if they admitted to that it would be actionable or something. That sort of thing could cause a patient serious harm, after all.
In conclusion they wish me a delightful autumn, which is nice.
Even if they aren't taking any real action, at least I was heard. Someone read the thing and took it seriously enough to respond to it. It's a start. If you disagree, don't tell me. I'm looking for a silver lining here.
Today I received the results of the investigation I mentioned, the one they initiated in response to my survey about my hospital stay. Let's take it point by point.
First of all, they note that their staff does try to monitor visitors while respecting each patient's desire and ability to receive guests. That doesn't really tell me much, other than that they knew what was going on and didn't act upon it. I suppose that's reasonable enough, given the circumstances. It's kind of cruel to tell a cancer patient they can't see their family or friends, even if that is a detriment to their roommate. Would have been nice to know their official policy on it, though. What does it mean to "monitor" something? They could have "monitored" someone trying to smother me with a pillow; doesn't really make a difference unless they take action on it.
They also informed me that they weren't required to give me a private room, which I know, and I understand that too. It seems to be more of a legal argument than a patient care one: you have no legal right to a private room so you have no recourse if we don't give you one. They go on to note that I could have paid extra to ensure a private room. Maybe they don't want to spoil us greedy patients with free privacy.
They note that they try to pair patients by gender and care needs, which makes sense to me as I was paired with another young man with cancer, who needed observation and some occasional routine care, same as I. I'm guessing that particular policy went out the window after they started moving me, as Mr. Liver was actively dying and I don't think I was doing quite that bad. I also don't think my medical needs (or gender) are similar to those of an old lady who wants ice cream.
Next a bit about the night nurse, the one who had me drink my own spit. He's sorry about that, and should have brought a filled cup from outside the room. They also inform me that when I was having trouble sleeping, he contacted my physician to get permission to give me a sleeping pill, but when he returned to my room he found me asleep and decided not to wake me.
I find that fascinating for two reasons.
1) When I'm trying to sleep, not even my own parents can tell that I'm not actually asleep. Furthermore every time a nurse entered my room to administer care I was awake and aware of them as soon as they entered the room.
2) That man must have a remarkable memory, or take very good notes.
No sleeping aid appeared on my invoice either, which was specific enough to include the exact date and cost of each individual treatment I received - from pills to blood glucose tests - though perhaps it wasn't listed because I never actually received the pill. Or maybe because that nurse is full of shit.
For my remaining complaints, the noise levels, my perpetually open door and the delay in response to my call bell... Sorry. They apologize for it, they regret it happened, but it doesn't look like they'll be doing a damn thing about it. They didn't even mention the alarms. Maybe they're worried if they admitted to that it would be actionable or something. That sort of thing could cause a patient serious harm, after all.
In conclusion they wish me a delightful autumn, which is nice.
Even if they aren't taking any real action, at least I was heard. Someone read the thing and took it seriously enough to respond to it. It's a start. If you disagree, don't tell me. I'm looking for a silver lining here.
Monday, October 17, 2011
Recovery
I never really intended to live so close to my parents. It happened naturally, as a result of consequences and work. After I graduated from university I moved back home so I could accumulate some savings, with which I could put a nice down payment on my own place. They charged me some rent but it was nothing outrageous; less than I now pay in association fees on a monthly basis. Once I had saved enough to purchase a condo I found one that was affordable and very close to my job (about 10 minutes away), and nice enough to be called an investment. That put me about 40 minutes away from my parents, which is one of the reasons they were able to provide logistical support through this ordeal.
Once we had a date for the surgery, we worked out a plan for my recovery. We agreed that it would probably be best that I not be on my own for a while, and even though things turned out much better than expected, I was not quite out of the danger zone yet. My father is an EMT with the local fire department, which meant he knew the procedure for caring for a patient such as myself or responding to an emergency.
I had to keep to a tight schedule at first. A handful of pills, to be taken at four points during the day, though later that would become three, then two, and now only one as I was slowly weaned off my medications. Decadron (steroids) for the swelling (which, I must admit, gave me much more energy than I was used to). Bactrin (antibiotic) to strengthen my immune system, which suffered due to the steroids. Zofran, for the nausea (due to steroids and the whole "brain surgery" thing). Two different flavors of stool softeners, as they didn't want me straining at anything; the floor of the resection was susceptible to hemorrhage early on (and I swear I'd never been so regular in my life). Wellbutrin for my depression, which I'd been taking for years and we decided that maybe we ought to wait a while before tweaking any long-term meds. Levothyroxin for my thyroid. I also had plenty of Tylenol on hand but never needed it.
The nights were difficult at first. I was keeping more regular hours than I ever had in my life - my therapist said I've been borderline sleep deprived for years - so waking up around 8 or 9 AM and actually feeling refreshed was new to me. I still woke up frequently during the night, mostly to go to the bathroom as I was required to keep my fluid intake as high as possible. My body had trouble regulating its temperature. I kept the AC turned on but sometimes I would start to feel remarkably cold, and cover up with a blanket. Then I'd wake up an hour or two later, drenched in sweat. Over time, the variations became less severe and eventually vanished entirely.
It was kind of nice, staying with my parents. My meals were prepared for me, and my only job was to relax and heal. I had to take things extremely slow, of course. When standing I needed to brace myself with my hands until I was sure I had my balance. I was still too weak and unstable to move very quickly, but still had to exercise for fear of clotting. I still couldn't bend over, or put any sort of pressure on my head. There was a whole list of foods I couldn't eat.
I also found that I liked mushrooms. I was never really all that fond of them, possibly due to a bad mushroom experience as a child, but I tried a few on a whim and took a liking to them. I'm inclined to believe that was more a matter of me giving them a shot than having lost my dislike of mushrooms through surgical intervention. I would not recommend any parent try brain surgery as a way to get their child to eat their veggies.
Before long I started to cook for myself again, in part to make sure I still knew how and in part because my mother had other things she'd rather be doing. I needed help showering at first because I couldn't get my suture wet, but they had a bench for me so I didn't have to stand, I handled everything else myself and gradually I worked up to showering alone, standing. My first post-surgical shave felt like being reborn; I used to have a goatie but had long gone clean shaven due to the itchiness of a beard, paired with a related bout of facial trichotillomania.
Over time I started to regain my strength, even as I stopped taking the steroids. My gait became stronger and steadier, and finally returned to normal. That chronic cough I had started to fade. Many of my visual symptoms continued to improve, though it was clear that my brain was still rewiring itself, occasionally leading to a new (albeit brief) symptom, such as a numbness on the top of my right wrist, or on the lower tips of the two last fingers on my left hand. I still had to watch for dizziness and it seemed all the progress from my recent eye exercises had been undone as I was again seeing double, though this too is a common symptom of brain surgery, and improved gradually. About a week after my surgery I played a game of Left 4 Dead 2 and quickly determined I was not ready for something quite that intense.
During that first week I started to communicate more, sending out updates to friends and family, asking about the outside world. I didn't stress over work, or much of anything, really. It was actually quite relaxing, and not a bad vacation.
Might have been nicer without the whole brain cancer thing, but these days I take what I can get.
Once we had a date for the surgery, we worked out a plan for my recovery. We agreed that it would probably be best that I not be on my own for a while, and even though things turned out much better than expected, I was not quite out of the danger zone yet. My father is an EMT with the local fire department, which meant he knew the procedure for caring for a patient such as myself or responding to an emergency.
I had to keep to a tight schedule at first. A handful of pills, to be taken at four points during the day, though later that would become three, then two, and now only one as I was slowly weaned off my medications. Decadron (steroids) for the swelling (which, I must admit, gave me much more energy than I was used to). Bactrin (antibiotic) to strengthen my immune system, which suffered due to the steroids. Zofran, for the nausea (due to steroids and the whole "brain surgery" thing). Two different flavors of stool softeners, as they didn't want me straining at anything; the floor of the resection was susceptible to hemorrhage early on (and I swear I'd never been so regular in my life). Wellbutrin for my depression, which I'd been taking for years and we decided that maybe we ought to wait a while before tweaking any long-term meds. Levothyroxin for my thyroid. I also had plenty of Tylenol on hand but never needed it.
The nights were difficult at first. I was keeping more regular hours than I ever had in my life - my therapist said I've been borderline sleep deprived for years - so waking up around 8 or 9 AM and actually feeling refreshed was new to me. I still woke up frequently during the night, mostly to go to the bathroom as I was required to keep my fluid intake as high as possible. My body had trouble regulating its temperature. I kept the AC turned on but sometimes I would start to feel remarkably cold, and cover up with a blanket. Then I'd wake up an hour or two later, drenched in sweat. Over time, the variations became less severe and eventually vanished entirely.
It was kind of nice, staying with my parents. My meals were prepared for me, and my only job was to relax and heal. I had to take things extremely slow, of course. When standing I needed to brace myself with my hands until I was sure I had my balance. I was still too weak and unstable to move very quickly, but still had to exercise for fear of clotting. I still couldn't bend over, or put any sort of pressure on my head. There was a whole list of foods I couldn't eat.
I also found that I liked mushrooms. I was never really all that fond of them, possibly due to a bad mushroom experience as a child, but I tried a few on a whim and took a liking to them. I'm inclined to believe that was more a matter of me giving them a shot than having lost my dislike of mushrooms through surgical intervention. I would not recommend any parent try brain surgery as a way to get their child to eat their veggies.
Before long I started to cook for myself again, in part to make sure I still knew how and in part because my mother had other things she'd rather be doing. I needed help showering at first because I couldn't get my suture wet, but they had a bench for me so I didn't have to stand, I handled everything else myself and gradually I worked up to showering alone, standing. My first post-surgical shave felt like being reborn; I used to have a goatie but had long gone clean shaven due to the itchiness of a beard, paired with a related bout of facial trichotillomania.
Over time I started to regain my strength, even as I stopped taking the steroids. My gait became stronger and steadier, and finally returned to normal. That chronic cough I had started to fade. Many of my visual symptoms continued to improve, though it was clear that my brain was still rewiring itself, occasionally leading to a new (albeit brief) symptom, such as a numbness on the top of my right wrist, or on the lower tips of the two last fingers on my left hand. I still had to watch for dizziness and it seemed all the progress from my recent eye exercises had been undone as I was again seeing double, though this too is a common symptom of brain surgery, and improved gradually. About a week after my surgery I played a game of Left 4 Dead 2 and quickly determined I was not ready for something quite that intense.
During that first week I started to communicate more, sending out updates to friends and family, asking about the outside world. I didn't stress over work, or much of anything, really. It was actually quite relaxing, and not a bad vacation.
Might have been nicer without the whole brain cancer thing, but these days I take what I can get.
Friday, October 14, 2011
Liberation
Usually when a nurse spoke to me, it was either to give an instruction (sit up, swallow these, lift your arm) to administer care, or to go through a series of rote and uninteresting questions (what's your birthday, what is today's date, where are you) to gauge my mental state.
On July 3rd, my usual nurse - about whom I have no complaints whatsoever - was taking a much-deserved day off. Let's call her replacement Sally.
Sally was young and pretty, and while she sounded a bit like a "Valley Girl" she was obviously intelligent and performed her duties - including getting me ready for dismissal - with skill and efficiency. She also seemed to actually care who I was. Hers were not the usual questions about the setting of my own personal drama. Instead she asked me what I did for a living. My title is long and far more impressive than it ought to be (to be honest I could never remember it without reading it off my own business card), and caught her interest, so she asked me to explain my work (I write reports analyzing market opportunities in the aerospace and defense industry, and no, I'm 100% civilian with no security clearance of any form). She complimented my hair, which at the time made me look like an extra from Mad Max: still as long as ever but rather messy, save the part they shaved for the surgery and the resulting incision, which was sutured with 45 metallic staples. She asked me where I lived. If I had a girlfriend.
It was the first time in days anyone had really acknowledged that I was not a disease, and that I did have a life beyond the hospital, one to which I would return. Two weeks prior to that moment, I had no idea I had cancer. I had hopes and dreams for my future. Not ambitious ones but you take what you can get. A 401k. I thank Sally, deeply and sincerely, for remembering that, and I admire the tremendous amount of strength it must require.
Unfortunately not all of my nurses were quite so courteous that day. They didn't want to dismiss me until they got a clear blood test, and as I've mentioned my platelets have a tendency to clump. They drew my blood four times, even after my doctor confirmed that yes, my blood does that, and no, you don't have to keep jabbing the patient. Each nurse assumed the previous one had done it wrong, or missed, or didn't get proper suction on the vial. One in particular scolded me for having "bad veins," yanked my bed away from the wall, and stabbed the butterfly directly into my left wrist without the slightest warning. I had never had blood taken from my wrist, and he did it with such little regard that it hurt more and healed slower than any of the IVs.
The next nurse apologized for his co-worker's behavior, and sadly said that yes, sometimes nurses do forget that their patients are people.
Then he drew my blood again.
They finally did release me from the hospital. They didn't even give me a wheelchair. Three days where I couldn't even stand up without a nurse present, then they just give me a pat on the back and send me on my way. They also gave me a scrip for oxycontin, which was nice of them I suppose but I really didn't need it and never filled it.
As a side note, the hospital did send me a survey about my stay. My response included an additional three type-written pages, including all of the complaints I've recounted here along with a handful of others too minor or mundane to make for a good story. A few weeks later I received a letter in return, the address hand-written. In response to my experience, a patient care advocate had launched an official investigation. I'm still waiting on the results.
As I put my clothes back on, they felt strange. So different from the hospital gown, and I had to be so very cautious putting them on. I needed help with my shirt as I couldn't see my sutures. Socks were an ordeal since I was forbidden to bend over; too much pressure could have caused a brain hemorrhage. Fastening my belt felt like an odd triumph, like a buckle was somehow the clearest of all indicators that yes, I was wearing real people clothes again, and yes, if I had the uniform of a real person I could go be a real person.
Even with my new-found freedom, I had to move slowly and intentionally. I was still weak, and while I never felt unstable I was acutely aware of what might happen if I fell and hit my head.
As we started the drive home we had to contend with the usual traffic, exceptionally dense and moving at a fair clip. Minutes from the hospital, my mother decided to change lanes early to make sure she got in the proper lane for an upcoming exit. Seconds later, there was a six-car accident in the lane we had just occupied, the lead car slamming on his breaks to avoid hitting some debris, the cars behind him left with no room to stop. I saw it happen right outside my window. There was no doubt in my mind that had we been in that accident, I would have ended up right back in the hospital or just plain dead.
My parents and I had decided it would be best were I to stay with them until I was confident I could live on my own again. Never before had a bed looked so inviting.
On July 3rd, my usual nurse - about whom I have no complaints whatsoever - was taking a much-deserved day off. Let's call her replacement Sally.
Sally was young and pretty, and while she sounded a bit like a "Valley Girl" she was obviously intelligent and performed her duties - including getting me ready for dismissal - with skill and efficiency. She also seemed to actually care who I was. Hers were not the usual questions about the setting of my own personal drama. Instead she asked me what I did for a living. My title is long and far more impressive than it ought to be (to be honest I could never remember it without reading it off my own business card), and caught her interest, so she asked me to explain my work (I write reports analyzing market opportunities in the aerospace and defense industry, and no, I'm 100% civilian with no security clearance of any form). She complimented my hair, which at the time made me look like an extra from Mad Max: still as long as ever but rather messy, save the part they shaved for the surgery and the resulting incision, which was sutured with 45 metallic staples. She asked me where I lived. If I had a girlfriend.
It was the first time in days anyone had really acknowledged that I was not a disease, and that I did have a life beyond the hospital, one to which I would return. Two weeks prior to that moment, I had no idea I had cancer. I had hopes and dreams for my future. Not ambitious ones but you take what you can get. A 401k. I thank Sally, deeply and sincerely, for remembering that, and I admire the tremendous amount of strength it must require.
Unfortunately not all of my nurses were quite so courteous that day. They didn't want to dismiss me until they got a clear blood test, and as I've mentioned my platelets have a tendency to clump. They drew my blood four times, even after my doctor confirmed that yes, my blood does that, and no, you don't have to keep jabbing the patient. Each nurse assumed the previous one had done it wrong, or missed, or didn't get proper suction on the vial. One in particular scolded me for having "bad veins," yanked my bed away from the wall, and stabbed the butterfly directly into my left wrist without the slightest warning. I had never had blood taken from my wrist, and he did it with such little regard that it hurt more and healed slower than any of the IVs.
The next nurse apologized for his co-worker's behavior, and sadly said that yes, sometimes nurses do forget that their patients are people.
Then he drew my blood again.
They finally did release me from the hospital. They didn't even give me a wheelchair. Three days where I couldn't even stand up without a nurse present, then they just give me a pat on the back and send me on my way. They also gave me a scrip for oxycontin, which was nice of them I suppose but I really didn't need it and never filled it.
As a side note, the hospital did send me a survey about my stay. My response included an additional three type-written pages, including all of the complaints I've recounted here along with a handful of others too minor or mundane to make for a good story. A few weeks later I received a letter in return, the address hand-written. In response to my experience, a patient care advocate had launched an official investigation. I'm still waiting on the results.
As I put my clothes back on, they felt strange. So different from the hospital gown, and I had to be so very cautious putting them on. I needed help with my shirt as I couldn't see my sutures. Socks were an ordeal since I was forbidden to bend over; too much pressure could have caused a brain hemorrhage. Fastening my belt felt like an odd triumph, like a buckle was somehow the clearest of all indicators that yes, I was wearing real people clothes again, and yes, if I had the uniform of a real person I could go be a real person.
Even with my new-found freedom, I had to move slowly and intentionally. I was still weak, and while I never felt unstable I was acutely aware of what might happen if I fell and hit my head.
As we started the drive home we had to contend with the usual traffic, exceptionally dense and moving at a fair clip. Minutes from the hospital, my mother decided to change lanes early to make sure she got in the proper lane for an upcoming exit. Seconds later, there was a six-car accident in the lane we had just occupied, the lead car slamming on his breaks to avoid hitting some debris, the cars behind him left with no room to stop. I saw it happen right outside my window. There was no doubt in my mind that had we been in that accident, I would have ended up right back in the hospital or just plain dead.
My parents and I had decided it would be best were I to stay with them until I was confident I could live on my own again. Never before had a bed looked so inviting.
Thursday, October 13, 2011
Semi-Private
My parents arrived around 10AM, and when they heard of the previous night's delights they again insisted I be moved. This time they demanded an empty room.
It's a selfish thing to demand since actual private rooms (as opposed to semi-private) cost far more, and we couldn't expect them to just toss out another patient so I could sleep better. Except they didn't have to. They never had to. Half of the floor was totally empty; they'd paired us up so the nurses had to check fewer rooms on rounds. Finally I was brought to an unoccupied room, and the staff said they would attempt to keep the other side empty, but they couldn't promise anything. Reasonable enough, as another patient may need that bed more than I needed my rest.
Just as I started to fall asleep, I got a new roommate. An old woman had fainted, and though she seemed to have recovered they still brought her into a patient room where she and her family loudly discussed what they would have for lunch. Most of her family was already in the building, as she was Mr. Liver's mother. She had refused to be put in the same room as her son because she "didn't want him to see her like that." At that point I'd been at the hospital for over two days (three if you count the day of the surgery) and had managed about three hours of actual sleep. I think they decided on ice cream.
After two hours or so she left, and her side of the room remained vacant for the rest of my stay.
Dr. Brain came to see me that day, and was pleased at how well I was doing, though he was surprised to see that I still had my drain. It had long run dry and should have been removed the previous night, but it seems no one ever got around to it. One of his assistants would later finally remove the tube, though the incision required additional stitches. Two, to be precise. He told me I could either take it without anesthetic and feel two pokes, or I could take it with anesthetic, but that would require two injections directly at the site of the incision (in other words, feel two pokes). I opted to go without the drugs, and my scalp was numb enough that I barely felt it anyway.
I received some more detailed neurological tests. First I was asked to memorize three words, which I had to repeat at the end of the test. I copied a simple symbol on a page, drew a clock from memory, and wrote a fake check (at least I really hope it was fake). I could still write, though my normally messy scrawl was even less legible, my hand weak. I was asked to do some basic math and count backwards from 100 by 7s. They asked me how many boroughs were in New York City, which I got right despite having only been to the city about four times in my life. Their evaluation was heartening to say the least: no physical or mental deficits. They wanted to monitor me for one more night, but felt confident that I would be able to leave around noon the next day. That meant a total of three in the hospital; they'd originally anticipated up to five.
My parents had brought me my laptop, which helped me to pass the time immensely. Up to that point I'd had nothing to do at all, as they hadn't anticipated I'd recover quickly enough to be able to use a computer (or even to simply be bored, I suppose). Netflix streaming video is a wonderful thing, as is Steam.
I'd told myself to hold off on communication. Between the drugs and the surgery, I knew I couldn't trust myself to maintain proper conversational etiquette and decorum. It was not only possible but probable that I'd say something depressing, or offensive, or embarrassingly nonsensical. To those of you who may be faced with a similar situation in your future, this is really good advice, and your friends will totally understand if they see you online but you don't say "hi."
So I pretty much ignored my good advice and sent out a few e-mails, sent a few private messages, etc. I did not completely abandon my plan and kept my conversations very short and basic, simple reassurances that things had gone well and hey, check me out, I'm totally still literate, and so I did manage to avoid later embarrassment.
I actually managed to sleep that night. Sure, it was less than perfect. A nurse still woke me up every hour to give me some medication, or check my blood pressure. I called a nurse so I could go to the bathroom and no one ever showed up (I was helped half an hour later by one who came with a nice cup of pills for me). They left the lights on and I had to sneak out of bed to turn them off myself. Four separate nurses cheerfully said that of course they would close my door, and then immediately failed to do so. Even so, I managed to fall asleep quickly after each interruption. Compared to the previous night, it was quite restful.
I slept about eight hours that night, enough that when morning came I felt rested. The steroids they gave me were partially to thank (or blame) for that.
I also felt very ready to leave. I was tired of being treated like a slab of meat. No nurse offered me any opportunity to bathe, at any point during my stay. Not even so much as a toothbrush. I felt greasy and sticky. I stank. My hair was filled with dried blood and gel.
You can imagine my surprise when a nurse started an actual conversation with me.
It's a selfish thing to demand since actual private rooms (as opposed to semi-private) cost far more, and we couldn't expect them to just toss out another patient so I could sleep better. Except they didn't have to. They never had to. Half of the floor was totally empty; they'd paired us up so the nurses had to check fewer rooms on rounds. Finally I was brought to an unoccupied room, and the staff said they would attempt to keep the other side empty, but they couldn't promise anything. Reasonable enough, as another patient may need that bed more than I needed my rest.
Just as I started to fall asleep, I got a new roommate. An old woman had fainted, and though she seemed to have recovered they still brought her into a patient room where she and her family loudly discussed what they would have for lunch. Most of her family was already in the building, as she was Mr. Liver's mother. She had refused to be put in the same room as her son because she "didn't want him to see her like that." At that point I'd been at the hospital for over two days (three if you count the day of the surgery) and had managed about three hours of actual sleep. I think they decided on ice cream.
After two hours or so she left, and her side of the room remained vacant for the rest of my stay.
Dr. Brain came to see me that day, and was pleased at how well I was doing, though he was surprised to see that I still had my drain. It had long run dry and should have been removed the previous night, but it seems no one ever got around to it. One of his assistants would later finally remove the tube, though the incision required additional stitches. Two, to be precise. He told me I could either take it without anesthetic and feel two pokes, or I could take it with anesthetic, but that would require two injections directly at the site of the incision (in other words, feel two pokes). I opted to go without the drugs, and my scalp was numb enough that I barely felt it anyway.
I received some more detailed neurological tests. First I was asked to memorize three words, which I had to repeat at the end of the test. I copied a simple symbol on a page, drew a clock from memory, and wrote a fake check (at least I really hope it was fake). I could still write, though my normally messy scrawl was even less legible, my hand weak. I was asked to do some basic math and count backwards from 100 by 7s. They asked me how many boroughs were in New York City, which I got right despite having only been to the city about four times in my life. Their evaluation was heartening to say the least: no physical or mental deficits. They wanted to monitor me for one more night, but felt confident that I would be able to leave around noon the next day. That meant a total of three in the hospital; they'd originally anticipated up to five.
My parents had brought me my laptop, which helped me to pass the time immensely. Up to that point I'd had nothing to do at all, as they hadn't anticipated I'd recover quickly enough to be able to use a computer (or even to simply be bored, I suppose). Netflix streaming video is a wonderful thing, as is Steam.
I'd told myself to hold off on communication. Between the drugs and the surgery, I knew I couldn't trust myself to maintain proper conversational etiquette and decorum. It was not only possible but probable that I'd say something depressing, or offensive, or embarrassingly nonsensical. To those of you who may be faced with a similar situation in your future, this is really good advice, and your friends will totally understand if they see you online but you don't say "hi."
So I pretty much ignored my good advice and sent out a few e-mails, sent a few private messages, etc. I did not completely abandon my plan and kept my conversations very short and basic, simple reassurances that things had gone well and hey, check me out, I'm totally still literate, and so I did manage to avoid later embarrassment.
I actually managed to sleep that night. Sure, it was less than perfect. A nurse still woke me up every hour to give me some medication, or check my blood pressure. I called a nurse so I could go to the bathroom and no one ever showed up (I was helped half an hour later by one who came with a nice cup of pills for me). They left the lights on and I had to sneak out of bed to turn them off myself. Four separate nurses cheerfully said that of course they would close my door, and then immediately failed to do so. Even so, I managed to fall asleep quickly after each interruption. Compared to the previous night, it was quite restful.
I slept about eight hours that night, enough that when morning came I felt rested. The steroids they gave me were partially to thank (or blame) for that.
I also felt very ready to leave. I was tired of being treated like a slab of meat. No nurse offered me any opportunity to bathe, at any point during my stay. Not even so much as a toothbrush. I felt greasy and sticky. I stank. My hair was filled with dried blood and gel.
You can imagine my surprise when a nurse started an actual conversation with me.
Wednesday, October 12, 2011
Waiting for Sunrise
A cancer center has to be a devastatingly difficult place to work. I wondered how many people the staff had watched die. How many never left my floor alive. How many of my fellow patients, at that moment, were breathing their last breaths. It must be enough to numb the soul. I can understand why some people simply shut down and refuse to recognize their patients as people. No sense getting attached when they'll be gone before long.
I pondered that as I was stuck with yet another needle. One of so many I barely even felt them any longer. They had me on steroids to reduce the swelling in my brain, which in turn threatened my blood sugar levels. Finger sticks became as common as giving my name. I was handed small cups of pills and told to swallow. No one explained to me what I was taking, or why, or what the side effects might be. The only time I got any sort of explanation was when I noticed an unusual-looking pill among the others, and asked if it was the correct medication. It was, just a different brand. I only noticed because I was aware of my surroundings and thinking with relative clarity. What about patients who were not so lucky? Those without the capacity to ask? Must a brain surgery patient be so responsible for his own care even in the hospital?
The sound of alarms seared itself into my brain. For a week after I left the hospital, I could hear that same repetitive buzzing in any white noise, especially that of an air conditioner. Everything in that hospital began to beep wildly when it stopped working, or was about to, and everything in that hospital broke frequently and spontaneously. It was so common there was not a single instant I could not hear an alarm somewhere. The nurses did not seem to notice or care, possibly too common an occurrence to address. They did not care if the noise bothered me. I was not a person. I was a chart.
That night, that awful night, one nurse placed a pair of sleeves over my legs, the sort that would inflate and deflate regularly to prevent blood clots. It worked for about ten minutes, then promptly stopped and began to emit a loud, repeating tone. I called for a nurse. Twenty minutes later, no one had come. Still it was beeping. I called again, and informed the nurse that if someone did not come in and handle the situation, I would smash the device on the floor. It was removed from my room within two minutes.
I couldn't even try to sleep during that night. Every hour someone was in to inject something into me, or have me take some pills, or otherwise disturb my attempts at rest. I begged for something to help knock me out but they could offer nothing, as they needed my mind to be clear, so they could monitor me for any abnormalities. My lungs were weak and a chronic cough became constant. They gave me a lozenge, but only one. I was informed that if I somehow got a bag of them from outside I could have as many as I pleased, but the hospital could only give me one every two hours, as if it were just as strong as the morphine I was no longer receiving. They left lights on. They left the door open. They laughed and chatted in the hallway.
Meanwhile, Mr. Liver groaned. Frequently, loudly and in agony. His daughter was spending the night with him. I can understand his pain. I can understand her desire to be with her father in his last hours, though it may have been nice if someone had informed me I'd be spending the night with an unfamiliar woman in my room. I had slept only about an hour in the previous day, only an hour since awakening from brain surgery, and I was running out of sympathy. I did not understand how anyone could be expected to recover under such conditions, or if they weren't actively harming my brain as it struggled to repair itself.
Then came the high point of my stay. As I mentioned I'd been coughing a lot, and had taken to spitting whatever I could produce into a paper cup. It was one of many, the others stacked upside-down beside it, clean and unused. Yet when the night nurse came to give me some pills, that was the cup he chose. I didn't notice until I felt a wad of my own spit slide into my mouth, to which I responded, "this is the very wrong cup."
He chastised me. He told me that I should have torn the edge of the cup, as though he would have noticed that in the darkness, as if that were the universal symbol for, "spit cup: do not use." It was my fault that he'd made me drink my own spit.
I suspect he later gave me the wrong medication as well. I was feeling slightly nauseous and asked for some Zofran, which had calmed my stomach quickly and effectively throughout my stay to that point. He gave me a pill and claimed that was what it was, yet its familiar effects never came. Not until the following day, when another nurse gave me another Zofran.
Though I saw it only as a subtle and growing brightening of my room, the light of dawn was never so beautiful.
I pondered that as I was stuck with yet another needle. One of so many I barely even felt them any longer. They had me on steroids to reduce the swelling in my brain, which in turn threatened my blood sugar levels. Finger sticks became as common as giving my name. I was handed small cups of pills and told to swallow. No one explained to me what I was taking, or why, or what the side effects might be. The only time I got any sort of explanation was when I noticed an unusual-looking pill among the others, and asked if it was the correct medication. It was, just a different brand. I only noticed because I was aware of my surroundings and thinking with relative clarity. What about patients who were not so lucky? Those without the capacity to ask? Must a brain surgery patient be so responsible for his own care even in the hospital?
The sound of alarms seared itself into my brain. For a week after I left the hospital, I could hear that same repetitive buzzing in any white noise, especially that of an air conditioner. Everything in that hospital began to beep wildly when it stopped working, or was about to, and everything in that hospital broke frequently and spontaneously. It was so common there was not a single instant I could not hear an alarm somewhere. The nurses did not seem to notice or care, possibly too common an occurrence to address. They did not care if the noise bothered me. I was not a person. I was a chart.
That night, that awful night, one nurse placed a pair of sleeves over my legs, the sort that would inflate and deflate regularly to prevent blood clots. It worked for about ten minutes, then promptly stopped and began to emit a loud, repeating tone. I called for a nurse. Twenty minutes later, no one had come. Still it was beeping. I called again, and informed the nurse that if someone did not come in and handle the situation, I would smash the device on the floor. It was removed from my room within two minutes.
I couldn't even try to sleep during that night. Every hour someone was in to inject something into me, or have me take some pills, or otherwise disturb my attempts at rest. I begged for something to help knock me out but they could offer nothing, as they needed my mind to be clear, so they could monitor me for any abnormalities. My lungs were weak and a chronic cough became constant. They gave me a lozenge, but only one. I was informed that if I somehow got a bag of them from outside I could have as many as I pleased, but the hospital could only give me one every two hours, as if it were just as strong as the morphine I was no longer receiving. They left lights on. They left the door open. They laughed and chatted in the hallway.
Meanwhile, Mr. Liver groaned. Frequently, loudly and in agony. His daughter was spending the night with him. I can understand his pain. I can understand her desire to be with her father in his last hours, though it may have been nice if someone had informed me I'd be spending the night with an unfamiliar woman in my room. I had slept only about an hour in the previous day, only an hour since awakening from brain surgery, and I was running out of sympathy. I did not understand how anyone could be expected to recover under such conditions, or if they weren't actively harming my brain as it struggled to repair itself.
Then came the high point of my stay. As I mentioned I'd been coughing a lot, and had taken to spitting whatever I could produce into a paper cup. It was one of many, the others stacked upside-down beside it, clean and unused. Yet when the night nurse came to give me some pills, that was the cup he chose. I didn't notice until I felt a wad of my own spit slide into my mouth, to which I responded, "this is the very wrong cup."
He chastised me. He told me that I should have torn the edge of the cup, as though he would have noticed that in the darkness, as if that were the universal symbol for, "spit cup: do not use." It was my fault that he'd made me drink my own spit.
I suspect he later gave me the wrong medication as well. I was feeling slightly nauseous and asked for some Zofran, which had calmed my stomach quickly and effectively throughout my stay to that point. He gave me a pill and claimed that was what it was, yet its familiar effects never came. Not until the following day, when another nurse gave me another Zofran.
Though I saw it only as a subtle and growing brightening of my room, the light of dawn was never so beautiful.
Tuesday, October 11, 2011
Waking
I'd been warned that I might awaken slowly, bit by bit. They said I might regain consciousness before I regained any motor functions, even the ability to open my eyes. Instead, I came to with such clarity that I noticed that was not what had happened even as I said, "Hi Mom."
There had been no guarantee that I would recognize her, or anyone, or that I'd be able to speak, or even that I'd ever wake up again. My next words, to my father, "Am I dead?" That, in relation to some conversations I'd had with him before the surgery, addressing the questions in my, "Who am I?" post; I was not questioning whether I was in some sort of afterlife but whether I was still the same person. I probably could have phrased the question better but hey, I just woke up from major brain surgery and was drugged out of my mind.
After the brief greeting I was wheeled off to the ICU. I felt surprisingly good, all things considered. My pain was so minor that the dryness of my throat was a greater discomfort; even drinking water would have made me vomit at that point and they had stuck a tube down my throat during the surgery, so I had to make do with the occasional tiny wet sponge to suck on. It wasn't until the third or so that I realized I was allowed to suck on it instead of just holding it in my mouth. Again, brain surgery, drugs.
It was actually quite remarkable how little pain I felt during the entire ordeal. It stands to reason, of course. There are very few sensory nerves inside the skull, and those in my scalp had largely been severed, leaving much of the top of my head numb. What little pain I did feel was quickly controlled, and by the second day of my stay I didn't need anything for the pain at all. During my entire recovery after that point, I never even needed a Tylenol. What I did feel were strange sensations on my scalp and across my suture. At first it felt like a wet dripping, which I mistook for blood. A close examination revealed no bleeding at all. For weeks after I would feel strange twinges from time to time. Also an itch. Intermittent but completely impossible to satisfy, as it was located on part of my scalp so numb I couldn't even feel my own touch. But again, I'm getting ahead of myself.
Even with the drugs in my system and the fatigue from my surgery, I could not sleep in the ICU. My nurse was constantly checking on me - which is to be expected - and my oxygen tubes kept slipping out, and I wasn't sure if I was supposed to have one or both in. Maybe they didn't want me getting THAT much oxygen, I reasoned. They frequently checked on a drain inserted into my head, a thin tube with a suction bulb on the end, which steadily drew a thick red fluid from my incision, lighter in color than blood.
As they wheeled my bed to the MRI, I felt kinesthetic shifts throughout my body. I felt like they were wheeling me down a slope, and when they stopped I felt as though they were slowly pulling me backwards. At one point I felt as though I was rising into the air, though looking around I could easily tell I was stationary. Most of all I felt very heavy, which was an effect of the morphine. That seemed to be all morphine would do to me: make me feel heavy and numb the pain. No hallucinations or highs, or anything so interesting. By that point every person I met would ask me for my name and birthday, and most would also run through a series of basic neurological tests to assess my condition. It became so routine that one nurse would simply say, "tell me a story."
This is where things started to get kind of bad, and before I go on I want to make a few things very clear. First of all, I feel that my doctors and most of my nurses did an excellent job caring for me, and I know that staying in a hospital is never fun. Secondly, I have a great deal of sympathy for my fellow patients and wish them all the best of luck. Third, I think that there's a point at which it becomes totally reasonable for a brain surgery patient to want some goddamn sleep and to hell with the doctors, nurses, and other patients.
They brought me to my hospital room, to let me rest. At least, that was the theory. The room had a nice view of the city and was really quite comfortable, except that it was a "semi-private" room, meaning I shared it with another patient and had all the privacy of a thin curtain. For some reason they'd designed that particular room so that the patient farthest from the door (my new roommate) had to pass directly through the other patient's (my) area to get to his own bed. My roommate, another young man who had been at the hospital for more than a month due to a spinal tumor, had several family members over and seemed to be having a small party. They left entire food trays along my windowsill to be picked up by hospital staff, while talking loudly about how good the food was. They blasted Christian rock constantly, even when none of them (patient included) were in the room. For my benefit, you see. My parents informed them that we are not a Christian family, to which they replied, "that's OK, Jesus will take care of you anyway." Very kind people, very sweet and thoughtful, but they seemed deathly afraid of silence and would not shut up. It was around the point that I heard my roommate on the phone saying, "we can't fit more than a dozen people in here so not everyone can come at once," that I thought maybe the situation was worth addressing. My mother got me transferred to another room. The next day, my former roommate had a party in his room, the entire day.
My next roommate seemed better. I'd prefer not to identify another human being as a disease but as that's all I really knew about the man, I'm going to call him Mr. Liver. Mr. Liver was suffering from liver failure. Jaundiced and bloated, he didn't have much time left. His family was there to see him and they were quiet and polite. They seemed to be trying to get Mr. Liver to hospice care but were unable, as the hospital was short-staffed due to the upcoming July 4th holiday. Either way, his family was courteous, he didn't seem too bad and my heart really went out to him as I knew he didn't have much longer.
He also peed all over the shared bathroom several times, and seemed incapable of speaking lower than a shout.
At the time that wasn't a big concern to me as I was still attached to a catheter. They had me stand and try walking with the aid of my IV stand - less than a day after brain surgery and they already had me doing laps - and it was a little dizzying at first but I did manage it. It made me very aware of how weak the surgery had made me; my gait had changed significantly, and while I never felt unsteady I did feel unsure of my footing at times, and had to walk very deliberately and carefully.
Once they determined that I could walk, they removed the catheter. That experience was more socially unpleasant than physically, as my penis (and anus) were somewhat numbed from the anesthesia, or perhaps from the surgery itself. Sensation would slowly return over the next two or so weeks, to my great relief, but at no point did I lack control of my bowels and bladder. The problem was that I was still hooked up to a saline drip, which meant I needed to go to the bathroom every hour or two, yet for liability reasons they refused to let me get out of bed without help. Unfortunately the nurses would rarely come immediately after their summons.
The nurses wanted to keep track of our urine so we each had separate containers, and my nurse (who herself was very kind and skilled) was rather horrified when she saw that my urine had apparently turned nearly black. My roommate didn't take the time to read the labels on the containers.
As visiting hours drew to a close I was less than thrilled with my circumstances but found them tolerable, even though at that point it had been about twenty hours since I'd last slept.
Thus began one of the worst nights of my life.
There had been no guarantee that I would recognize her, or anyone, or that I'd be able to speak, or even that I'd ever wake up again. My next words, to my father, "Am I dead?" That, in relation to some conversations I'd had with him before the surgery, addressing the questions in my, "Who am I?" post; I was not questioning whether I was in some sort of afterlife but whether I was still the same person. I probably could have phrased the question better but hey, I just woke up from major brain surgery and was drugged out of my mind.
After the brief greeting I was wheeled off to the ICU. I felt surprisingly good, all things considered. My pain was so minor that the dryness of my throat was a greater discomfort; even drinking water would have made me vomit at that point and they had stuck a tube down my throat during the surgery, so I had to make do with the occasional tiny wet sponge to suck on. It wasn't until the third or so that I realized I was allowed to suck on it instead of just holding it in my mouth. Again, brain surgery, drugs.
It was actually quite remarkable how little pain I felt during the entire ordeal. It stands to reason, of course. There are very few sensory nerves inside the skull, and those in my scalp had largely been severed, leaving much of the top of my head numb. What little pain I did feel was quickly controlled, and by the second day of my stay I didn't need anything for the pain at all. During my entire recovery after that point, I never even needed a Tylenol. What I did feel were strange sensations on my scalp and across my suture. At first it felt like a wet dripping, which I mistook for blood. A close examination revealed no bleeding at all. For weeks after I would feel strange twinges from time to time. Also an itch. Intermittent but completely impossible to satisfy, as it was located on part of my scalp so numb I couldn't even feel my own touch. But again, I'm getting ahead of myself.
Even with the drugs in my system and the fatigue from my surgery, I could not sleep in the ICU. My nurse was constantly checking on me - which is to be expected - and my oxygen tubes kept slipping out, and I wasn't sure if I was supposed to have one or both in. Maybe they didn't want me getting THAT much oxygen, I reasoned. They frequently checked on a drain inserted into my head, a thin tube with a suction bulb on the end, which steadily drew a thick red fluid from my incision, lighter in color than blood.
As they wheeled my bed to the MRI, I felt kinesthetic shifts throughout my body. I felt like they were wheeling me down a slope, and when they stopped I felt as though they were slowly pulling me backwards. At one point I felt as though I was rising into the air, though looking around I could easily tell I was stationary. Most of all I felt very heavy, which was an effect of the morphine. That seemed to be all morphine would do to me: make me feel heavy and numb the pain. No hallucinations or highs, or anything so interesting. By that point every person I met would ask me for my name and birthday, and most would also run through a series of basic neurological tests to assess my condition. It became so routine that one nurse would simply say, "tell me a story."
This is where things started to get kind of bad, and before I go on I want to make a few things very clear. First of all, I feel that my doctors and most of my nurses did an excellent job caring for me, and I know that staying in a hospital is never fun. Secondly, I have a great deal of sympathy for my fellow patients and wish them all the best of luck. Third, I think that there's a point at which it becomes totally reasonable for a brain surgery patient to want some goddamn sleep and to hell with the doctors, nurses, and other patients.
They brought me to my hospital room, to let me rest. At least, that was the theory. The room had a nice view of the city and was really quite comfortable, except that it was a "semi-private" room, meaning I shared it with another patient and had all the privacy of a thin curtain. For some reason they'd designed that particular room so that the patient farthest from the door (my new roommate) had to pass directly through the other patient's (my) area to get to his own bed. My roommate, another young man who had been at the hospital for more than a month due to a spinal tumor, had several family members over and seemed to be having a small party. They left entire food trays along my windowsill to be picked up by hospital staff, while talking loudly about how good the food was. They blasted Christian rock constantly, even when none of them (patient included) were in the room. For my benefit, you see. My parents informed them that we are not a Christian family, to which they replied, "that's OK, Jesus will take care of you anyway." Very kind people, very sweet and thoughtful, but they seemed deathly afraid of silence and would not shut up. It was around the point that I heard my roommate on the phone saying, "we can't fit more than a dozen people in here so not everyone can come at once," that I thought maybe the situation was worth addressing. My mother got me transferred to another room. The next day, my former roommate had a party in his room, the entire day.
My next roommate seemed better. I'd prefer not to identify another human being as a disease but as that's all I really knew about the man, I'm going to call him Mr. Liver. Mr. Liver was suffering from liver failure. Jaundiced and bloated, he didn't have much time left. His family was there to see him and they were quiet and polite. They seemed to be trying to get Mr. Liver to hospice care but were unable, as the hospital was short-staffed due to the upcoming July 4th holiday. Either way, his family was courteous, he didn't seem too bad and my heart really went out to him as I knew he didn't have much longer.
He also peed all over the shared bathroom several times, and seemed incapable of speaking lower than a shout.
At the time that wasn't a big concern to me as I was still attached to a catheter. They had me stand and try walking with the aid of my IV stand - less than a day after brain surgery and they already had me doing laps - and it was a little dizzying at first but I did manage it. It made me very aware of how weak the surgery had made me; my gait had changed significantly, and while I never felt unsteady I did feel unsure of my footing at times, and had to walk very deliberately and carefully.
Once they determined that I could walk, they removed the catheter. That experience was more socially unpleasant than physically, as my penis (and anus) were somewhat numbed from the anesthesia, or perhaps from the surgery itself. Sensation would slowly return over the next two or so weeks, to my great relief, but at no point did I lack control of my bowels and bladder. The problem was that I was still hooked up to a saline drip, which meant I needed to go to the bathroom every hour or two, yet for liability reasons they refused to let me get out of bed without help. Unfortunately the nurses would rarely come immediately after their summons.
The nurses wanted to keep track of our urine so we each had separate containers, and my nurse (who herself was very kind and skilled) was rather horrified when she saw that my urine had apparently turned nearly black. My roommate didn't take the time to read the labels on the containers.
As visiting hours drew to a close I was less than thrilled with my circumstances but found them tolerable, even though at that point it had been about twenty hours since I'd last slept.
Thus began one of the worst nights of my life.
Monday, October 10, 2011
Surgery
I don't remember much from the day of the surgery. Maybe due to my nerves, maybe because there wasn't much to remember on that day. Maybe because those were the freshest memories I had at the time of the surgery; the ones, I'd been told, I'd be most likely to lose.
I think it was around 10AM. I went straight from the hotel to the hospital. They brought me to a small corner of a crowded room and had me sit on a tiny bed surrounded by machines, separated from the clamor by a thin curtain. I could see the city through what little of the window remained exposed, the venetian blinds nearly all the way down. I had to remove all of my clothing and put on a hospital gown, and socks with a rubberized texture on either side. My clothing went into a long, dark-blue bag with a zipper running down the front. I couldn't help but notice how much it resembled a body bag. A nurse gave me a few final tests to make sure I was ready for surgery. Blood pressure, that sort of thing.
Then I was in a hospital bed, being wheeled through the hospital by a kind nurse and orderly. We chatted during my trip. Light conversation, jokes, my defenses of choice.
In the operating room I met my nurses. One of them went by one name only. "Like Cher?," I asked. They laughed at that. I can still remember their eyes. Their faces and heads were covered of course, but I could see their eyes. They warned me that I would feel a pinch, and they started inserting the IVs. Three of them, judging by memory and by the three tiny scars I now carry, one on the back of either hand and one on my right wrist, for the arterial IV. I remember staring up at the fluorescent lighting in the ceiling, focusing on how I felt, trying to watch the anesthetics overtake me. If I succeeded, I do not remember.
The operating room was state-of-the-art, specifically designed for treating gliomas. During the operation I would be resting on a bed attached to an arm so that they could rotate me into an MRI right there in the room, and check on their progress in the middle of the operation, without even closing my head up. I was told that my head would be secured using some sort of gel, which I believe since I was picking the stuff out of my hair for weeks to come. Based on my own research and from watching a web seminar given by Dr. Brain in the days following my surgery, I now also believe some sort of vice-like device was used to hold my head still, as evidenced by three scars on my head, one behind the left temple, one behind the left ear, and one behind the right ear. They never mentioned these to me, nor did they provide sutures. The first we learned of them was from my mother washing my hair and exclaiming, "there's a hole in your head!" A rather reddish, angry hole, to be precise. They have now healed, but I doubt the hair will ever regrow.
From what I understand, I was under for about nine and a half hours. Only about five of those involved surgery; the first four and a half had me waiting for the doctor, something to which I have become quite accustomed though I do wish they'd have the courtesy to knock me out every time. Five hours is about average for a surgery of the sort, and while I apparently bled a surprising amount, there were no complications. Even so, they had no idea how it would turn out until I actually woke up. After the operation, Dr. Brain met with my parents to tell them how it went and to again try to prepare them for all possible outcomes.
The incision is in something of a hook shape, staring beside my left ear, right up my sideburn, then curving around just behind the hairline until it reaches the very center of my forehead, stopping right at the hairline. It was sutured with 45 staples, which now sit in a small jar on my shelf. A small piece of my skull was removed, then later replaced with a series of four titanium plates. "Plate" is a generous term, as they're really just small tabs used to connect pairs of screws. I can feel them under my skin. The tumor contained a few cysts that had to be drained before resection, thereby changing the shape of the mass, which again shows the value of the in-OR MRI. Dr. Brain was able to remove 98% of the mass, but did not operate on the right hemisphere or the corpus callosum, nor did he attempt to scrape any lingering cells from a pair of large blood vessels that the tumor had been pressing against (possibly the cause of my migraines). The mass was preserved and frozen so that it could be analyzed for a pathology report, which would tell us precisely what we were dealing with and inform us as to how we should proceed. I would later donate the leftovers to the cancer center for research purposes.
Given the amount of brain that had been removed, the painkillers in my system and the lingering anesthetics, I remember waking up surprisingly well. In particular, I remember being surprised that I immediately knew where I was, why I was there, who was around me, and that for all intents and purposes I felt pretty much normal.
Which was really very fortunate, because my hospital stay was so bad it literally lead to an investigation.
I think it was around 10AM. I went straight from the hotel to the hospital. They brought me to a small corner of a crowded room and had me sit on a tiny bed surrounded by machines, separated from the clamor by a thin curtain. I could see the city through what little of the window remained exposed, the venetian blinds nearly all the way down. I had to remove all of my clothing and put on a hospital gown, and socks with a rubberized texture on either side. My clothing went into a long, dark-blue bag with a zipper running down the front. I couldn't help but notice how much it resembled a body bag. A nurse gave me a few final tests to make sure I was ready for surgery. Blood pressure, that sort of thing.
Then I was in a hospital bed, being wheeled through the hospital by a kind nurse and orderly. We chatted during my trip. Light conversation, jokes, my defenses of choice.
In the operating room I met my nurses. One of them went by one name only. "Like Cher?," I asked. They laughed at that. I can still remember their eyes. Their faces and heads were covered of course, but I could see their eyes. They warned me that I would feel a pinch, and they started inserting the IVs. Three of them, judging by memory and by the three tiny scars I now carry, one on the back of either hand and one on my right wrist, for the arterial IV. I remember staring up at the fluorescent lighting in the ceiling, focusing on how I felt, trying to watch the anesthetics overtake me. If I succeeded, I do not remember.
The operating room was state-of-the-art, specifically designed for treating gliomas. During the operation I would be resting on a bed attached to an arm so that they could rotate me into an MRI right there in the room, and check on their progress in the middle of the operation, without even closing my head up. I was told that my head would be secured using some sort of gel, which I believe since I was picking the stuff out of my hair for weeks to come. Based on my own research and from watching a web seminar given by Dr. Brain in the days following my surgery, I now also believe some sort of vice-like device was used to hold my head still, as evidenced by three scars on my head, one behind the left temple, one behind the left ear, and one behind the right ear. They never mentioned these to me, nor did they provide sutures. The first we learned of them was from my mother washing my hair and exclaiming, "there's a hole in your head!" A rather reddish, angry hole, to be precise. They have now healed, but I doubt the hair will ever regrow.
From what I understand, I was under for about nine and a half hours. Only about five of those involved surgery; the first four and a half had me waiting for the doctor, something to which I have become quite accustomed though I do wish they'd have the courtesy to knock me out every time. Five hours is about average for a surgery of the sort, and while I apparently bled a surprising amount, there were no complications. Even so, they had no idea how it would turn out until I actually woke up. After the operation, Dr. Brain met with my parents to tell them how it went and to again try to prepare them for all possible outcomes.
The incision is in something of a hook shape, staring beside my left ear, right up my sideburn, then curving around just behind the hairline until it reaches the very center of my forehead, stopping right at the hairline. It was sutured with 45 staples, which now sit in a small jar on my shelf. A small piece of my skull was removed, then later replaced with a series of four titanium plates. "Plate" is a generous term, as they're really just small tabs used to connect pairs of screws. I can feel them under my skin. The tumor contained a few cysts that had to be drained before resection, thereby changing the shape of the mass, which again shows the value of the in-OR MRI. Dr. Brain was able to remove 98% of the mass, but did not operate on the right hemisphere or the corpus callosum, nor did he attempt to scrape any lingering cells from a pair of large blood vessels that the tumor had been pressing against (possibly the cause of my migraines). The mass was preserved and frozen so that it could be analyzed for a pathology report, which would tell us precisely what we were dealing with and inform us as to how we should proceed. I would later donate the leftovers to the cancer center for research purposes.
Given the amount of brain that had been removed, the painkillers in my system and the lingering anesthetics, I remember waking up surprisingly well. In particular, I remember being surprised that I immediately knew where I was, why I was there, who was around me, and that for all intents and purposes I felt pretty much normal.
Which was really very fortunate, because my hospital stay was so bad it literally lead to an investigation.
Friday, October 7, 2011
Preparation
The operation was to be performed on June 30th, 2011, in New York City. I had to come down on the 29th for a little preparation, which was precisely orchestrated by an administrator (let's call her Dr. Administrator. I'm not sure she's a doctor, but worry she might track me down if I accidentally call her Ms.).
Dr. Administrator is great at her job. She makes sure everything runs like clockwork, and if a gear slips she's right there with a replacement. Even if that replacement works for a living and can't spend even five minutes in the city without the commute sucking up the entire day. Such was the case about a week before the operation, when there was a problem with one of my blood tests. My platelets tend to clump on the slide, making it impossible to get an accurate count. Dr. Administrator insisted we return to the city right at that moment, and when my father protested that we couldn't simply drop everything and come in, she exclaimed, "this isn't for convenience, this is brain surgery!" So, something of an intense woman, enough to gain sufficient fear and respect to keep things running smoothly.
The agenda for the 29th was simple. They needed an accurate, up to date MRI, along with a series of external reference points to make absolutely sure they could line up that ghostly white outline with my actual brain and body before they started carving.
To begin, they glued six foam circles to my head, each one looking like a cream-colored washer a little larger than a nickel, with a hole in the center. One went in the center of my forehead, then one on either side of that, then one on either temple, and finally one in the very back of my head. They had to cut away a little hair a bit for that last one.
I hadn't had anything more than the slightest trim for 15 years at that point. More than half my life. My hair reached the small of my back and I tended to keep it tied up in a ponytail. When I was younger I got a lot of compliments about it (along with shocking accusations that I permed it), though over the years it had lost some of its thickness and luster. To be honest, I'd been thinking of cutting it anyway. I simply wasn't looking for such a good reason as cancer. The man administering my little foam circles had a ponytail as well. When he needed to cut away that bit in the back he apologized with the understanding only found in other ponytail-owners, and encouraged me to grow it back.
After the circles were firmly fastened to my head, he traced the outline of each in purple permanent marker, with a dot in the very center, so if any fell off they could reattach them in the same exact spot.
I've spent my entire life living in the countryside. Cities seem impossibly crowded to me, more-so when people are constantly staring at me. The city took a great interest in my new accessories, which isn't surprising. I had only just learned what the circles were myself, and had definitely never seen anything of the sort before. If I have learned one thing from this experience, it is that to get through it, one must set aside their pride. I have had a nurse remove a catheter. Another nurse ask me in detail about my bowel movements. An ultrasound technician rammed a scanner so hard into my naked groin that I thought she was trying to dislocate my femur, looking for blood clots. I was allowed to feel human maybe once during my hospital stay. I'm getting ahead of myself now; the point is, looking funny would be the least of my problems.
As I've noted earlier, MRIs aren't a whole lot of fun. They are much less fun when you have a foam dot on the back of your head and must hold perfectly still. With the full weight of my head upon that one foam dot, it soon started to feel completely solid. If the audience would care to participate, find a nice hard surface to lie upon, set your head down on a nickel, and hold it still for 45 minutes.
Afterwards we - my mother, my father and I - checked in to a nearby hotel. All I wanted to do was relax and sort through my thoughts, the same sorts of thoughts I covered in the "Who am I?" post. However my mother is a very light sleeper, and even though I was less than a day away from brain surgery, we still had to spend two hours trying to get her the perfect room. The first one wasn't good enough because she saw a child run down the hall. The second, because it was near the elevator. And of course I had to be right next door, so every time they moved, I had to move.
Surgery doesn't get much more dangerous or serious than removing part of the brain. I could have died on the table, and was struggling with the idea that even if I didn't, I'd no longer be the same person. In other words, the "me" who I was had less than a day to live, and I was forced to waste two hours of that precious time watching my parents argue with a fucking receptionist because Mom wanted to sleep slightly better that night.
We did finally get settled in, and I did finally get some time to myself. I'm an amateur photographer and had brought my camera, figuring there were few things more worthy of documentation in my life. I took pictures of the view from my window (when you live in a town where the tallest structure is about three stories, viewing a cityscape from the 16th floor is kind of a big deal). I took pictures of myself, with my long hair and those dots glued to my forehead. I felt oddly calm at the time, but looking at the pictures now I appear terrified. I did eat dinner with my parents - I had some tacos from the local Mexican place - but even as I entered there room Mom was arguing with Dad over returning a bottle of vitamins. Vitamin C, to be precise. She was eating them as a snack and didn't like how they tasted. She wanted better-tasting Vitamin C tablets. Yeah, I don't really get it either. After we'd said our goodnights, I went back to my room and ordered a movie through the hotel's entertainment service. Battle for Los Angeles, a profoundly stupid action movie, delivered at poor quality for about the cost of an actual DVD. I'm a fan of stupid action movies, though maybe subconsciously I was thinking that the fates that were cruel enough to give me cancer would not be so evil as to allow that to be the last movie I ever saw.
Surprisingly, it was not difficult for me to fall asleep that night, even in a strange place, in a strange bed, surrounded by strange sounds, confronted by a strange and frightening thing.
My mother still didn't get much sleep. Figures.
Dr. Administrator is great at her job. She makes sure everything runs like clockwork, and if a gear slips she's right there with a replacement. Even if that replacement works for a living and can't spend even five minutes in the city without the commute sucking up the entire day. Such was the case about a week before the operation, when there was a problem with one of my blood tests. My platelets tend to clump on the slide, making it impossible to get an accurate count. Dr. Administrator insisted we return to the city right at that moment, and when my father protested that we couldn't simply drop everything and come in, she exclaimed, "this isn't for convenience, this is brain surgery!" So, something of an intense woman, enough to gain sufficient fear and respect to keep things running smoothly.
The agenda for the 29th was simple. They needed an accurate, up to date MRI, along with a series of external reference points to make absolutely sure they could line up that ghostly white outline with my actual brain and body before they started carving.
To begin, they glued six foam circles to my head, each one looking like a cream-colored washer a little larger than a nickel, with a hole in the center. One went in the center of my forehead, then one on either side of that, then one on either temple, and finally one in the very back of my head. They had to cut away a little hair a bit for that last one.
I hadn't had anything more than the slightest trim for 15 years at that point. More than half my life. My hair reached the small of my back and I tended to keep it tied up in a ponytail. When I was younger I got a lot of compliments about it (along with shocking accusations that I permed it), though over the years it had lost some of its thickness and luster. To be honest, I'd been thinking of cutting it anyway. I simply wasn't looking for such a good reason as cancer. The man administering my little foam circles had a ponytail as well. When he needed to cut away that bit in the back he apologized with the understanding only found in other ponytail-owners, and encouraged me to grow it back.
After the circles were firmly fastened to my head, he traced the outline of each in purple permanent marker, with a dot in the very center, so if any fell off they could reattach them in the same exact spot.
I've spent my entire life living in the countryside. Cities seem impossibly crowded to me, more-so when people are constantly staring at me. The city took a great interest in my new accessories, which isn't surprising. I had only just learned what the circles were myself, and had definitely never seen anything of the sort before. If I have learned one thing from this experience, it is that to get through it, one must set aside their pride. I have had a nurse remove a catheter. Another nurse ask me in detail about my bowel movements. An ultrasound technician rammed a scanner so hard into my naked groin that I thought she was trying to dislocate my femur, looking for blood clots. I was allowed to feel human maybe once during my hospital stay. I'm getting ahead of myself now; the point is, looking funny would be the least of my problems.
As I've noted earlier, MRIs aren't a whole lot of fun. They are much less fun when you have a foam dot on the back of your head and must hold perfectly still. With the full weight of my head upon that one foam dot, it soon started to feel completely solid. If the audience would care to participate, find a nice hard surface to lie upon, set your head down on a nickel, and hold it still for 45 minutes.
Afterwards we - my mother, my father and I - checked in to a nearby hotel. All I wanted to do was relax and sort through my thoughts, the same sorts of thoughts I covered in the "Who am I?" post. However my mother is a very light sleeper, and even though I was less than a day away from brain surgery, we still had to spend two hours trying to get her the perfect room. The first one wasn't good enough because she saw a child run down the hall. The second, because it was near the elevator. And of course I had to be right next door, so every time they moved, I had to move.
Surgery doesn't get much more dangerous or serious than removing part of the brain. I could have died on the table, and was struggling with the idea that even if I didn't, I'd no longer be the same person. In other words, the "me" who I was had less than a day to live, and I was forced to waste two hours of that precious time watching my parents argue with a fucking receptionist because Mom wanted to sleep slightly better that night.
We did finally get settled in, and I did finally get some time to myself. I'm an amateur photographer and had brought my camera, figuring there were few things more worthy of documentation in my life. I took pictures of the view from my window (when you live in a town where the tallest structure is about three stories, viewing a cityscape from the 16th floor is kind of a big deal). I took pictures of myself, with my long hair and those dots glued to my forehead. I felt oddly calm at the time, but looking at the pictures now I appear terrified. I did eat dinner with my parents - I had some tacos from the local Mexican place - but even as I entered there room Mom was arguing with Dad over returning a bottle of vitamins. Vitamin C, to be precise. She was eating them as a snack and didn't like how they tasted. She wanted better-tasting Vitamin C tablets. Yeah, I don't really get it either. After we'd said our goodnights, I went back to my room and ordered a movie through the hotel's entertainment service. Battle for Los Angeles, a profoundly stupid action movie, delivered at poor quality for about the cost of an actual DVD. I'm a fan of stupid action movies, though maybe subconsciously I was thinking that the fates that were cruel enough to give me cancer would not be so evil as to allow that to be the last movie I ever saw.
Surprisingly, it was not difficult for me to fall asleep that night, even in a strange place, in a strange bed, surrounded by strange sounds, confronted by a strange and frightening thing.
My mother still didn't get much sleep. Figures.
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