Here's an interesting clip from TEDTalks describing a new treatment for brain and trunk cancers that has just completed clinical trials. In trials, GBM4 patients whose cancer had recurred after they'd received surgery, radiation and chemo wore this device instead of taking another round of traditional treatment. While it did not extend their life expectancy beyond that of the control group, it kept them alive just as well but without any side effects. No nausea, no fatigue, no chemo fog... just a silly robot hat. A small price to pay.
Bill Doyle cites one patient (whose results appear to be atypical), who was given three months to live. Within one year of using TTF treatment, he no longer showed any enhancement on his MRI. Five years after starting his treatment, he's still alive, without side-effects and well enough to go to work.
From what I understand, the treatment involves wearing a device over the afflicted region. It is totally non-invasive, and uses an electrical field to suppress cell reproduction. Even though it's been proven to work on its own, Doyle says studies are ongoing on how to best use it in conjunction with other treatments. Rather than replace chemotherapy and radiation, it could dramatically improve their effectiveness.
These are some exciting times, my friends.
Showing posts with label glioma. Show all posts
Showing posts with label glioma. Show all posts
Tuesday, January 31, 2012
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.
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.
Steve Jobs, Dr. Nick and Cancer Quackery
I think that Orac puts it pretty well in his recent post on Nicholas Gonzalez lamenting that he could have saved Steve Jobs.
As Orac notes, Gonzalez is a practitioner of "alternative" cancer treatments, based mainly on nutritional supplements and routine "coffee enemas," just in case you want to temper the joys of having cancer by blasting a cappuccino up your ass on a daily basis. Gonzalez bemoans how the biased media treats him and his fellow miracle workers, and how all those high-falutin', book-readin', "oncologists" get all the credit just because they treat patients with their fancy "medicine." Orac does an excellent job skewering the guy but I think the most important take-away is that Gonzalez's treatments have been shown to lead to worse results than the control group.
In other words, it's worse than doing absolutely nothing. He is harming patients by leading them away from conventional and effective treatments, and harming them again by actually promoting their disease rather than suppressing it. And again, can't stress this enough, coffee enemas.
That said, I think Orac may be mistaking ignorance for malice here. I try to take people at their word - which is admittedly a naive thing to do - and I think that Gonzalez believes his hype. I think he does think he can work miracles while the establishment tricks cancer patients into filing into monolithic hospitals to be ineffectually butchered. I do think Orac gives a pretty good framework for why he could believe that (namely for a lack of understanding of the scientific process). So I don't think Gonzalez means to hurt anyone, here. The problem is, he does, and that's my problem with quackery, woo and alternative medicine in general.
Now I understand the placebo effect. I understand that prayer can actually help people, even though I attribute that more to psychology than theology. I think there's a place for that in modern medicine. The thing is, it must be part of a larger, science-based treatment regimen. Even when the alternative treatment itself isn't harmful, if a patient forgoes conventional, effective treatment in favor of alternative techniques, they are being harmed. Time is critical for cancer patients. Waiting to see if some snake oil works can cut years off a patient's life, or cut it off entirely.
I'd love it if these treatments worked. I'd love it if I could be cured of this disease without being cut apart and exposed to dangerously toxic substances. I'd love it if I could drink a $0.50 cup of herbal tea a day instead of tallying medical bills.
But I can't. To hell with anyone who tries to make a buck off convincing me otherwise, no matter how sincere they may be.
As Orac notes, Gonzalez is a practitioner of "alternative" cancer treatments, based mainly on nutritional supplements and routine "coffee enemas," just in case you want to temper the joys of having cancer by blasting a cappuccino up your ass on a daily basis. Gonzalez bemoans how the biased media treats him and his fellow miracle workers, and how all those high-falutin', book-readin', "oncologists" get all the credit just because they treat patients with their fancy "medicine." Orac does an excellent job skewering the guy but I think the most important take-away is that Gonzalez's treatments have been shown to lead to worse results than the control group.
In other words, it's worse than doing absolutely nothing. He is harming patients by leading them away from conventional and effective treatments, and harming them again by actually promoting their disease rather than suppressing it. And again, can't stress this enough, coffee enemas.
That said, I think Orac may be mistaking ignorance for malice here. I try to take people at their word - which is admittedly a naive thing to do - and I think that Gonzalez believes his hype. I think he does think he can work miracles while the establishment tricks cancer patients into filing into monolithic hospitals to be ineffectually butchered. I do think Orac gives a pretty good framework for why he could believe that (namely for a lack of understanding of the scientific process). So I don't think Gonzalez means to hurt anyone, here. The problem is, he does, and that's my problem with quackery, woo and alternative medicine in general.
Now I understand the placebo effect. I understand that prayer can actually help people, even though I attribute that more to psychology than theology. I think there's a place for that in modern medicine. The thing is, it must be part of a larger, science-based treatment regimen. Even when the alternative treatment itself isn't harmful, if a patient forgoes conventional, effective treatment in favor of alternative techniques, they are being harmed. Time is critical for cancer patients. Waiting to see if some snake oil works can cut years off a patient's life, or cut it off entirely.
I'd love it if these treatments worked. I'd love it if I could be cured of this disease without being cut apart and exposed to dangerously toxic substances. I'd love it if I could drink a $0.50 cup of herbal tea a day instead of tallying medical bills.
But I can't. To hell with anyone who tries to make a buck off convincing me otherwise, no matter how sincere they may be.
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.
Thursday, October 6, 2011
Who am I?
It seems a pithy question. One that everyone asks themselves once in their life before concluding that they're at least trying to be a good person, or that they need to purchase a sports car right now.
It takes on a different meaning when a kind gentleman is elbow-deep in your personality.
I had always thought of cancer as something like a balloon. You can fill it with air and it takes up more space, but cancer cells are cancer cells and healthy cells are healthy cells. The cancer crowds out the healthy cells but it doesn't replace them. Inflating a balloon does not create more balloon. My oncologist told me differently. He said that the tissue within my tumor was functional. It likely wasn't functioning well, and some of it wasn't functioning at all - to truly abuse the balloon metaphor, some of the tumor was cystic so there was obviously nothing going on in there - but it did have a function. Furthermore, because my cancer is low-grade and has been there for such a long time, the bulk of the tumor did not have the classic look of cancer. Typically, a brain tumor is a fleshy, irritated, pinkish color, and more veinous than surrounding, healthy brain tissue. My tumor was much less so, especially around the edges where it transitioned to healthy tissue. In addition, cancer cells tend to spread throughout the surrounding tissue, away from the primary tumor itself; thankfully the blood-brain barrier prevents these stray cells from metastasizing to elsewhere in the body (usually).
Basically what all that meant was that there was no way to avoid cutting out some healthy tissue along with the tumor. Stuff that clearly had a function, and while it likely wasn't feeling very good due to the pressure from the tumor, some of it was totally clean. It posed no risk to me whatsoever.
To give you an idea of just how much they removed, the main mass they resected was 8 centimeters. As the doctor said, "very large." This, bearing in mind that when they remove or destroy both sides of the frontal lobe we call that a "frontal lobotomy." Given that the cancer has spread to the right frontal as well (albeit in a far lower concentration), I'm hoping that between neural plasticity and the radiation and chemotherapy I've received that they aren't going to have to gradually lobotomize me. Even in my darkest times, I had always taken pride in my intelligence. The tumor had to be removed, there was no question of that, but I worried that I would lose the one thing I liked about myself.
Judging by the size of the tumor and its growth rate, my doctors think I may have had this thing for more than 15 years. My parents say I suddenly became very serious around the age of 5, which could also be a sign of the disease. I may have had this cancer for as long as I can remember, with all the problems and abnormalities it brought with it: the severe depression, the distorted view of my own self worth, the lack of motivation, the fear of risk. And I will readily admit, I have felt better since my surgery. Those feelings have all decreased substantially. When I look at old photographs of myself, I recognize myself and I remember looking at those same pictures in the past, but I literally look different. I no longer see the same ugliness I used to.
That sounds like an improvement, then, doesn't it? That I rid myself of these negative emotions and feelings, and that they are no longer holding me back, keeping me from having a life?
Except improvement is a change. It means I'm different. I hated that dark side of myself, that overbearing depression that made me wonder why I never got to be happy, but it was a part of me. That cancer was derived from my body, made of my cells. Sure it was killing me, but we are all dying from our imperfect bodies. Who am I to say that cancer was not part of me?
It's hard to explain what it was like, trying to figure out my own identity during my recovery. I felt like I had been shattered, and had to put myself back together. Most of the parts were there, and most of the parts I'd lost I didn't much care for anyway, but it was up to me to see what I had left and to put them back together. For a time I felt like I had been reborn, not in the sense that I had a fresh start but because I felt like a newcomer. My memories were intact, I knew the people around me, and I was told that directly after the surgery I seemed like I hadn't changed at all (except for all the morphine and a haircut). But if you disassemble a house and use that material to build an identical house, is it the same house?
I had been told that people wouldn't even notice a difference, but that I would. The house knows it has been rebuilt, even if its occupants do not.
I have yet to find a satisfactory answer. There might not even be such a thing.
What I do know is that I am now who I am now. I can work with that, and keep moving forward.
It takes on a different meaning when a kind gentleman is elbow-deep in your personality.
I had always thought of cancer as something like a balloon. You can fill it with air and it takes up more space, but cancer cells are cancer cells and healthy cells are healthy cells. The cancer crowds out the healthy cells but it doesn't replace them. Inflating a balloon does not create more balloon. My oncologist told me differently. He said that the tissue within my tumor was functional. It likely wasn't functioning well, and some of it wasn't functioning at all - to truly abuse the balloon metaphor, some of the tumor was cystic so there was obviously nothing going on in there - but it did have a function. Furthermore, because my cancer is low-grade and has been there for such a long time, the bulk of the tumor did not have the classic look of cancer. Typically, a brain tumor is a fleshy, irritated, pinkish color, and more veinous than surrounding, healthy brain tissue. My tumor was much less so, especially around the edges where it transitioned to healthy tissue. In addition, cancer cells tend to spread throughout the surrounding tissue, away from the primary tumor itself; thankfully the blood-brain barrier prevents these stray cells from metastasizing to elsewhere in the body (usually).
Basically what all that meant was that there was no way to avoid cutting out some healthy tissue along with the tumor. Stuff that clearly had a function, and while it likely wasn't feeling very good due to the pressure from the tumor, some of it was totally clean. It posed no risk to me whatsoever.
To give you an idea of just how much they removed, the main mass they resected was 8 centimeters. As the doctor said, "very large." This, bearing in mind that when they remove or destroy both sides of the frontal lobe we call that a "frontal lobotomy." Given that the cancer has spread to the right frontal as well (albeit in a far lower concentration), I'm hoping that between neural plasticity and the radiation and chemotherapy I've received that they aren't going to have to gradually lobotomize me. Even in my darkest times, I had always taken pride in my intelligence. The tumor had to be removed, there was no question of that, but I worried that I would lose the one thing I liked about myself.
Judging by the size of the tumor and its growth rate, my doctors think I may have had this thing for more than 15 years. My parents say I suddenly became very serious around the age of 5, which could also be a sign of the disease. I may have had this cancer for as long as I can remember, with all the problems and abnormalities it brought with it: the severe depression, the distorted view of my own self worth, the lack of motivation, the fear of risk. And I will readily admit, I have felt better since my surgery. Those feelings have all decreased substantially. When I look at old photographs of myself, I recognize myself and I remember looking at those same pictures in the past, but I literally look different. I no longer see the same ugliness I used to.
That sounds like an improvement, then, doesn't it? That I rid myself of these negative emotions and feelings, and that they are no longer holding me back, keeping me from having a life?
Except improvement is a change. It means I'm different. I hated that dark side of myself, that overbearing depression that made me wonder why I never got to be happy, but it was a part of me. That cancer was derived from my body, made of my cells. Sure it was killing me, but we are all dying from our imperfect bodies. Who am I to say that cancer was not part of me?
It's hard to explain what it was like, trying to figure out my own identity during my recovery. I felt like I had been shattered, and had to put myself back together. Most of the parts were there, and most of the parts I'd lost I didn't much care for anyway, but it was up to me to see what I had left and to put them back together. For a time I felt like I had been reborn, not in the sense that I had a fresh start but because I felt like a newcomer. My memories were intact, I knew the people around me, and I was told that directly after the surgery I seemed like I hadn't changed at all (except for all the morphine and a haircut). But if you disassemble a house and use that material to build an identical house, is it the same house?
I had been told that people wouldn't even notice a difference, but that I would. The house knows it has been rebuilt, even if its occupants do not.
I have yet to find a satisfactory answer. There might not even be such a thing.
What I do know is that I am now who I am now. I can work with that, and keep moving forward.
Wednesday, October 5, 2011
Saying Goodbyes
For the approximately two weeks between the discovery of my tumor and the operation, I did my best to keep others from knowing. After a few days I managed to act more or less like my usual self, and distributed any additional information on a need-to-know basis, which meant that my manager, my CEO and my HR person knew, but very few others. I work for a family-owned business (though not owned by my family) and so each of these people knew me personally and was very supportive, particularly HR, whose son had won a fight with another sort of cancer.
I also told a good friend and co-worker, let's call him Sam. We chat frequently, so he knew that I was having visual problems and he knew that I'd been scheduled for an MRI. I felt it only fair that he know the results. He was out the week of the 17th, but the following Monday I asked him if he could step outside for a moment so we could speak privately. There, behind the emergency exit, standing on an untended grass field beside some rough woodland, I told him about the mass they had found. For a time, he spoke to me delicately. We went and got some burgers for lunch a few days later, something very unusual for him as he typically brings his own lunch.
As my job demands adherence to a publication schedule - regardless of an editor's health - I had to train our research assistant to cover for me in my absence. Now, he's not a bad guy and I have nothing against him, but I wasn't entirely comfortable handing over my book to anyone like that. I had inherited it from my friend and mentor years ago after he died of pancreatic cancer, and I turned it from a side-project into a stand-alone product successful enough to justify my salary. This research assistant had a reputation for convoluted writing, and during his brief training he didn't even respect the work enough to take down any notes on the fairly complicated procedure of updating one of my reports. As such, I had to show him twice.
He knew that I would be taking about a month off but no one had told him why, which was by my request. I ran into him at the supermarket and he asked me if everything was all right.
It was a reasonable question, and also a difficult one. It's one that should only be asked with the expectation of an honest answer. I told him, simply, "no," and refused to go any further into detail. Of course he would eventually know the full story. Everyone would. I arranged with the HR person to have a message distributed after I left, one with minimal detail other than an assurance that I had taken a necessary leave for medical reasons.
I spent a lot of time thinking about who I should tell, and how much. I tend to deal with problems alone so I needed my personal space, and my parents kindly kept my other relatives in the dark or otherwise at bay. I began to collect a list of names, of people who wanted to be kept up to date, and wanted to know how things turned out. I e-mailed two of my friends from university, with whom I hadn't communicated in nearly two years; I was convinced that I'd done something wrong, or that they'd tired of me and no longer wished to know me. Still, we had been through enough that I felt they should know. Two hours later, the three of us were getting dinner together. One of them lives an hour and a half away. Just like old times.
Up until the afternoon of June 28th, during my last two hours of work before leaving, my co-workers thought I would be taking a vacation in Canada. I'd wanted to go for some time and made no secret of it, and as I'm not the sort to take time off often I had about a month of vacation saved up. I had actually planned to take a trip just like that earlier in the year, but fortunately kept putting it off.
That day we had a little ice cream party in our cafeteria. I attended, though it was unrelated to me or my departure. About two dozen people came, then eventually wandered off, back to their own work until there were only five of us left. Sam, two others I'll call Jack and Jill (who will have their roles to play later in my story), a fourth, and myself. A bit of good luck, as I those were the four I wanted to know the truth before I left. So, quietly, standing by the refrigerator beside a sticky table, I told them that I was not going to Canada. I told them where I was really going.
It is truly amazing, how good people can be. Or at least, it is truly amazing how good people can be to me. I had known them to be my friends and I had known I could trust them, but in part due to my disease I had never realized how much they cared about me. I didn't know anyone cared about me that much, and that was the hardest part. For most of my life, this cancer has blinded me to my own worth.
Everyone now obviously knows that I did not go to Canada, and what really happened. There are only a few things that can make a scar like that, after all. They say they understand why I lied, but I think they only get part of it. It wasn't just about privacy. It was for the same reason I started wearing a bandana when my hair began to fall out: I did not want to be a disease to them. I did not want to be a constant reminder that brain cancer exists, or that their friend has it. I wanted them to see me, instead of what may come.
Even as I got my affairs in order, another thought occupied my mind in the days leading up to the surgery. I do not believe in such a thing as a soul. I believe that personality, memories, and identity are derived from the brain. Primarily, the frontal lobe.
And I was about to lose nearly half of mine.
I also told a good friend and co-worker, let's call him Sam. We chat frequently, so he knew that I was having visual problems and he knew that I'd been scheduled for an MRI. I felt it only fair that he know the results. He was out the week of the 17th, but the following Monday I asked him if he could step outside for a moment so we could speak privately. There, behind the emergency exit, standing on an untended grass field beside some rough woodland, I told him about the mass they had found. For a time, he spoke to me delicately. We went and got some burgers for lunch a few days later, something very unusual for him as he typically brings his own lunch.
As my job demands adherence to a publication schedule - regardless of an editor's health - I had to train our research assistant to cover for me in my absence. Now, he's not a bad guy and I have nothing against him, but I wasn't entirely comfortable handing over my book to anyone like that. I had inherited it from my friend and mentor years ago after he died of pancreatic cancer, and I turned it from a side-project into a stand-alone product successful enough to justify my salary. This research assistant had a reputation for convoluted writing, and during his brief training he didn't even respect the work enough to take down any notes on the fairly complicated procedure of updating one of my reports. As such, I had to show him twice.
He knew that I would be taking about a month off but no one had told him why, which was by my request. I ran into him at the supermarket and he asked me if everything was all right.
It was a reasonable question, and also a difficult one. It's one that should only be asked with the expectation of an honest answer. I told him, simply, "no," and refused to go any further into detail. Of course he would eventually know the full story. Everyone would. I arranged with the HR person to have a message distributed after I left, one with minimal detail other than an assurance that I had taken a necessary leave for medical reasons.
I spent a lot of time thinking about who I should tell, and how much. I tend to deal with problems alone so I needed my personal space, and my parents kindly kept my other relatives in the dark or otherwise at bay. I began to collect a list of names, of people who wanted to be kept up to date, and wanted to know how things turned out. I e-mailed two of my friends from university, with whom I hadn't communicated in nearly two years; I was convinced that I'd done something wrong, or that they'd tired of me and no longer wished to know me. Still, we had been through enough that I felt they should know. Two hours later, the three of us were getting dinner together. One of them lives an hour and a half away. Just like old times.
Up until the afternoon of June 28th, during my last two hours of work before leaving, my co-workers thought I would be taking a vacation in Canada. I'd wanted to go for some time and made no secret of it, and as I'm not the sort to take time off often I had about a month of vacation saved up. I had actually planned to take a trip just like that earlier in the year, but fortunately kept putting it off.
That day we had a little ice cream party in our cafeteria. I attended, though it was unrelated to me or my departure. About two dozen people came, then eventually wandered off, back to their own work until there were only five of us left. Sam, two others I'll call Jack and Jill (who will have their roles to play later in my story), a fourth, and myself. A bit of good luck, as I those were the four I wanted to know the truth before I left. So, quietly, standing by the refrigerator beside a sticky table, I told them that I was not going to Canada. I told them where I was really going.
It is truly amazing, how good people can be. Or at least, it is truly amazing how good people can be to me. I had known them to be my friends and I had known I could trust them, but in part due to my disease I had never realized how much they cared about me. I didn't know anyone cared about me that much, and that was the hardest part. For most of my life, this cancer has blinded me to my own worth.
Everyone now obviously knows that I did not go to Canada, and what really happened. There are only a few things that can make a scar like that, after all. They say they understand why I lied, but I think they only get part of it. It wasn't just about privacy. It was for the same reason I started wearing a bandana when my hair began to fall out: I did not want to be a disease to them. I did not want to be a constant reminder that brain cancer exists, or that their friend has it. I wanted them to see me, instead of what may come.
Even as I got my affairs in order, another thought occupied my mind in the days leading up to the surgery. I do not believe in such a thing as a soul. I believe that personality, memories, and identity are derived from the brain. Primarily, the frontal lobe.
And I was about to lose nearly half of mine.
Tuesday, October 4, 2011
The Tumor
My first MRI appointment was on May 25th, but by some stroke of bad luck I became very ill on May 24th, more ill than I'd ever been in my life. I'd felt fine at work, and no one else got sick before or after. About two hours after I got home I passed out, and figured that'd probably be a good time to get to bed. I slept for 40 hours, waking up only long enough to call in to work. I have no idea if my sickness was related to the cancer, or exacerbated by it, or if it was simply a very bad cold. I still wanted to get the MRI, but given my tenuous hold on consciousness and potential for contagion, it really was not an option. The next available appointment was on June 16th.
By then, I had noticed some more symptoms. I kept seeing a reddish tinge in the corner of my left eye, only to eventually notice there was a sort of burn there, something that persists to this day. Turning my head to the left or right made me extremely dizzy, and my neck felt sore. I was getting one or two minor optical migraines per day. In the waiting room, the TV was showing live proceedings from the Casey Anthony trial. The judge had denied her motion for a mistrial, and the receptionist seemed very pleased about that. She and I chatted for a while, then I went in for my MRI.
MRIs are generally unpleasant. They're very tight, and very loud, and take about 45 minutes. Sometimes (as in my case) they involve a large-gauge needle, to apply contrast. As a bit of foreshadowing, I now think that MRIs are quite roomy and comfortable. More on that later.
After the MRI I returned to Dr. Eyeballs' office, and he informed me that they had not found a blood vessel pressing against my optic nerve. But further back they found, in his words, "a big problem."
You know when a doctor describes something as "very large," it's not a good sign. I asked him to confirm, for the sake of complete clarity, that we were talking about a brain tumor. Yes, we were.
When I saw the MRI for the first time, all I could say was, "that is very big." It occupied most of my left frontal lobe, and completely filled the front left ventricle, a sphere of tissue with uneven streaks of white within, indicating areas of increased uptake. Dr. Eyeballs told me that the edge of the tumor was well defined, and they'd likely be able to remove the whole thing. Dr. Eyeballs is not an oncologist. He did not note the light, whispy trail leading across my corpus callosum, branching into my right hemisphere. That part accounted for only about 2% of the tumor's total mass, but all it takes is a single neglected cell.
He immediately referred me to a neurosurgeon with an office across the parking lot. I saw him immediately, and he was not as optimistic as Dr. Eyeballs. He noted the intrusion into the right hemisphere. He noted that the higher uptake in the core of the tumor, along with the sudden onset of symptoms, indicated that it might have transformed into a grade 3, or high-grade, cancer. He said that he could remove most of the mass, but that in all likelihood I'd only recover mentally about 75%. That eventually most people probably wouldn't even notice a difference, but that I would. He said that it would likely take me weeks or months of occupational therapy before I could return to some semblance of a normal life. He also said that he'd performed about 16 similar resections during his entire career. My family and I scheduled a date for the surgery (July 1st), but decided to seek a second opinion. My mother pretty much hated him.
I didn't. She hated him because he gave us bad news. I appreciated that. I tend to deal with problems by learning as much about them as possible, both the good and the bad. I would much rather someone give me an honest survey of my situation than sugar-coat or keep things from me, and to be honest, given that doctor's level of experience I have a feeling his prognosis would have been correct had we gone with him.
The day after my initial diagnosis, I returned to work. People always seem a little shocked when I tell them that, but I really had no choice. I needed a distraction, anything to take my mind off the previous day. Things got off to a rocky start as my mother e-mailed me 4 times in the first 30 minutes, each time with some ridiculous miracle cure promising to completely cure me if only I ate enough vitamin E. She's fond of the "nutraceutical" movement. It had to stop. I couldn't have her constantly reminding me of my illness when the only reason I'd gone to work was so I could ignore it for a while. More than that, I couldn't let her believe that everything was going to be just fine. Things were going to change; how could they not, when I was to lose a piece of brain the size of a lemon? There is a fine line between pessimism and realism, and while I stay optimistic about my situation, I am first and foremost a realist.
Plan A is to beat my cancer.
Plan B is to understand that Plan A is unlikely to happen.
I called my father to play mediator and he decided to limit her to one e-mail per day. She sulked about it, but it was a tremendous help to me in those early days.
For the second opinion, we went to New York City and one of the leading cancer centers in the world, where we met with one of the leading neurosurgeons in the world, let's call him Dr. Brain. Dr. Brain met with me for all of ten minutes before accepting my case, and seemed genuinely interested in it and in me as a patient. He gave us a slightly better prognosis but did confirm that there would likely be some effects and that I might need some occupational therapy to get back up to speed. However, Dr. Brain was recognized as one of the stars in his field and had so many resections under his belt I was surprised he still had a waist. We decided to go with him, and he scheduled the operation for June 30th.
Things moved very quickly from there.
By then, I had noticed some more symptoms. I kept seeing a reddish tinge in the corner of my left eye, only to eventually notice there was a sort of burn there, something that persists to this day. Turning my head to the left or right made me extremely dizzy, and my neck felt sore. I was getting one or two minor optical migraines per day. In the waiting room, the TV was showing live proceedings from the Casey Anthony trial. The judge had denied her motion for a mistrial, and the receptionist seemed very pleased about that. She and I chatted for a while, then I went in for my MRI.
MRIs are generally unpleasant. They're very tight, and very loud, and take about 45 minutes. Sometimes (as in my case) they involve a large-gauge needle, to apply contrast. As a bit of foreshadowing, I now think that MRIs are quite roomy and comfortable. More on that later.
After the MRI I returned to Dr. Eyeballs' office, and he informed me that they had not found a blood vessel pressing against my optic nerve. But further back they found, in his words, "a big problem."
You know when a doctor describes something as "very large," it's not a good sign. I asked him to confirm, for the sake of complete clarity, that we were talking about a brain tumor. Yes, we were.
When I saw the MRI for the first time, all I could say was, "that is very big." It occupied most of my left frontal lobe, and completely filled the front left ventricle, a sphere of tissue with uneven streaks of white within, indicating areas of increased uptake. Dr. Eyeballs told me that the edge of the tumor was well defined, and they'd likely be able to remove the whole thing. Dr. Eyeballs is not an oncologist. He did not note the light, whispy trail leading across my corpus callosum, branching into my right hemisphere. That part accounted for only about 2% of the tumor's total mass, but all it takes is a single neglected cell.
He immediately referred me to a neurosurgeon with an office across the parking lot. I saw him immediately, and he was not as optimistic as Dr. Eyeballs. He noted the intrusion into the right hemisphere. He noted that the higher uptake in the core of the tumor, along with the sudden onset of symptoms, indicated that it might have transformed into a grade 3, or high-grade, cancer. He said that he could remove most of the mass, but that in all likelihood I'd only recover mentally about 75%. That eventually most people probably wouldn't even notice a difference, but that I would. He said that it would likely take me weeks or months of occupational therapy before I could return to some semblance of a normal life. He also said that he'd performed about 16 similar resections during his entire career. My family and I scheduled a date for the surgery (July 1st), but decided to seek a second opinion. My mother pretty much hated him.
I didn't. She hated him because he gave us bad news. I appreciated that. I tend to deal with problems by learning as much about them as possible, both the good and the bad. I would much rather someone give me an honest survey of my situation than sugar-coat or keep things from me, and to be honest, given that doctor's level of experience I have a feeling his prognosis would have been correct had we gone with him.
The day after my initial diagnosis, I returned to work. People always seem a little shocked when I tell them that, but I really had no choice. I needed a distraction, anything to take my mind off the previous day. Things got off to a rocky start as my mother e-mailed me 4 times in the first 30 minutes, each time with some ridiculous miracle cure promising to completely cure me if only I ate enough vitamin E. She's fond of the "nutraceutical" movement. It had to stop. I couldn't have her constantly reminding me of my illness when the only reason I'd gone to work was so I could ignore it for a while. More than that, I couldn't let her believe that everything was going to be just fine. Things were going to change; how could they not, when I was to lose a piece of brain the size of a lemon? There is a fine line between pessimism and realism, and while I stay optimistic about my situation, I am first and foremost a realist.
Plan A is to beat my cancer.
Plan B is to understand that Plan A is unlikely to happen.
I called my father to play mediator and he decided to limit her to one e-mail per day. She sulked about it, but it was a tremendous help to me in those early days.
For the second opinion, we went to New York City and one of the leading cancer centers in the world, where we met with one of the leading neurosurgeons in the world, let's call him Dr. Brain. Dr. Brain met with me for all of ten minutes before accepting my case, and seemed genuinely interested in it and in me as a patient. He gave us a slightly better prognosis but did confirm that there would likely be some effects and that I might need some occupational therapy to get back up to speed. However, Dr. Brain was recognized as one of the stars in his field and had so many resections under his belt I was surprised he still had a waist. We decided to go with him, and he scheduled the operation for June 30th.
Things moved very quickly from there.
Monday, October 3, 2011
In the beginning...
This story begins many years ago, maybe as many as fifteen or twenty.
It started to get interesting on March 17th, 2011.
I had just returned home from visiting my parents after work, the time approximately 6PM. I was tired, as was common for that time of day, and as I climbed the steps to my front door I felt a minor headache coming on. It wasn't severe, but was enough that I decided to take an ibuprofen to stifle it entirely, which it did. Minutes later, however, I noticed an odd dark spot in my vision. I didn't know what to make of it at the time as it wasn't quite like a retinal burn from staring at a bright light but was similar enough that I wasn't terribly concerned. Except it didn't fade. Rather it persisted and spread, becoming something else entirely, grey streaks through which I could not see, filled with white zig-zagging lines that seemed to move with a fluctuating speed. I sat down at my computer to Google these symptoms - at the time the internet was my primary care physician - when I discovered the lines were preventing me from reading. At that point I called my father, an EMT, and told him I was having trouble seeing. He ran me through a few brief questions, then told me to call 911.
I waited for the ambulance in the parking lot, the disturbances having spread over much of my visual field. The peripheral vision in my left eye was gone entirely. On the ride to the hospital I was repeatedly subjected to what I now know are called "neuros," a series of basic tests meant to gauge the symmetry and capacity of my neurological state. It consisted mainly of my pushing and resisting the EMT's hands. I also had to remind the EMT of my age a great many times. In the coming months I would become acutely familiar with all of these practices. The EMT determined that I was suffering from an atypical optical migraine - atypical due to the lack of a severe headache - that was likely caused by stress. The ER doctor later concurred. Over time the visual disturbances faded. Patients to my left and right were offered additional scans, at which my parents smirked and muttered about "running up the bill." When I was offered one I declined; I'd been told what was wrong with me, after all, and hadn't planned on spending my entire evening in the hospital. Besides, I felt fine at that point.
Of course I wasn't fine. The migraine wasn't caused by stress. And it was only through a rare instance of logic and humility that I would come to learn that. I decided maybe I ought to follow up with my opthamologist, a man I'd been seeing for about twenty years due to my strabismus. He'd operated on my eyes, and knew them better than I did. Let's call him Dr. Eyeballs.
Dr. Eyeballs agreed with the initial diagnosis, that I had suffered an optical migraine. By the time I saw him I had suffered several more attacks, though none of them as severe as the first. As they weren't painful and didn't really bother me very much, I wasn't concerned and so neither was he. He did find that I had a convergence problem with my vision, something normal and expected of someone with strabismus, and so he prescribed a series of exercises to strengthen my eyes. I had been experiencing a great deal of eyestrain lately and so I readily agreed. The exercises helped with my convergence and reduced that eyestrain significantly.
Then the blind spots appeared.
Over the months I worked on my convergence issues, I began to suffer from other optical problems. I started to see dark rings in my vision, something I'd seen in the past but only when very tired. They had become constant. Dark and light flashes had become so common I no longer trusted my peripheral vision. In the morning, when the sun shone on my face, through my eyelids I could see strange stationary "star burst" patterns, with wavy lines radiating from a pink center. I couldn't find anything of the sort described on the internet. Then one day I noticed that the very centers of those star bursts had become blurry patches even when my eyes were open. I suffered from other symptoms, too: ripples and waves in my vision if I put any pressure on my eyes, and fields of sparkling blue lights that would abruptly vanish. I felt like I was looking through a camera rather than through my own eyes. My research told me that these were early symptoms of retinal detachment.
In addition, I had started to suffer from other maladies unrelated to my vision. Whenever I stood up I would get very dizzy, and feel an intense pressure in my right ear, accompanied by the sound of my own heartbeat. Very often, an optical migraine would follow shortly. I discovered at these were symptoms of TMJ and noticed that I did grind my teeth a lot, and while my effort to stop did improve my symptoms dramatically, it did not eliminate them.
When I brought these symptoms to Dr. Eyeballs' attention, he examined my retinas closely and told me he saw no problem with them whatsoever. That they were perfectly healthy. Note that he was wrong, as a neurologist later discovered through the exact same sort of examination. My blurry spots were caused by irritation to the same, normal blind spot that we all have, which in turn was caused by growing pressure in my head. At that point, he ordered a cranial MRI. Given my optical migraine, he suspected a blood vessel pressing against my optic nerves.
That is not what we found.
It started to get interesting on March 17th, 2011.
I had just returned home from visiting my parents after work, the time approximately 6PM. I was tired, as was common for that time of day, and as I climbed the steps to my front door I felt a minor headache coming on. It wasn't severe, but was enough that I decided to take an ibuprofen to stifle it entirely, which it did. Minutes later, however, I noticed an odd dark spot in my vision. I didn't know what to make of it at the time as it wasn't quite like a retinal burn from staring at a bright light but was similar enough that I wasn't terribly concerned. Except it didn't fade. Rather it persisted and spread, becoming something else entirely, grey streaks through which I could not see, filled with white zig-zagging lines that seemed to move with a fluctuating speed. I sat down at my computer to Google these symptoms - at the time the internet was my primary care physician - when I discovered the lines were preventing me from reading. At that point I called my father, an EMT, and told him I was having trouble seeing. He ran me through a few brief questions, then told me to call 911.
I waited for the ambulance in the parking lot, the disturbances having spread over much of my visual field. The peripheral vision in my left eye was gone entirely. On the ride to the hospital I was repeatedly subjected to what I now know are called "neuros," a series of basic tests meant to gauge the symmetry and capacity of my neurological state. It consisted mainly of my pushing and resisting the EMT's hands. I also had to remind the EMT of my age a great many times. In the coming months I would become acutely familiar with all of these practices. The EMT determined that I was suffering from an atypical optical migraine - atypical due to the lack of a severe headache - that was likely caused by stress. The ER doctor later concurred. Over time the visual disturbances faded. Patients to my left and right were offered additional scans, at which my parents smirked and muttered about "running up the bill." When I was offered one I declined; I'd been told what was wrong with me, after all, and hadn't planned on spending my entire evening in the hospital. Besides, I felt fine at that point.
Of course I wasn't fine. The migraine wasn't caused by stress. And it was only through a rare instance of logic and humility that I would come to learn that. I decided maybe I ought to follow up with my opthamologist, a man I'd been seeing for about twenty years due to my strabismus. He'd operated on my eyes, and knew them better than I did. Let's call him Dr. Eyeballs.
Dr. Eyeballs agreed with the initial diagnosis, that I had suffered an optical migraine. By the time I saw him I had suffered several more attacks, though none of them as severe as the first. As they weren't painful and didn't really bother me very much, I wasn't concerned and so neither was he. He did find that I had a convergence problem with my vision, something normal and expected of someone with strabismus, and so he prescribed a series of exercises to strengthen my eyes. I had been experiencing a great deal of eyestrain lately and so I readily agreed. The exercises helped with my convergence and reduced that eyestrain significantly.
Then the blind spots appeared.
Over the months I worked on my convergence issues, I began to suffer from other optical problems. I started to see dark rings in my vision, something I'd seen in the past but only when very tired. They had become constant. Dark and light flashes had become so common I no longer trusted my peripheral vision. In the morning, when the sun shone on my face, through my eyelids I could see strange stationary "star burst" patterns, with wavy lines radiating from a pink center. I couldn't find anything of the sort described on the internet. Then one day I noticed that the very centers of those star bursts had become blurry patches even when my eyes were open. I suffered from other symptoms, too: ripples and waves in my vision if I put any pressure on my eyes, and fields of sparkling blue lights that would abruptly vanish. I felt like I was looking through a camera rather than through my own eyes. My research told me that these were early symptoms of retinal detachment.
In addition, I had started to suffer from other maladies unrelated to my vision. Whenever I stood up I would get very dizzy, and feel an intense pressure in my right ear, accompanied by the sound of my own heartbeat. Very often, an optical migraine would follow shortly. I discovered at these were symptoms of TMJ and noticed that I did grind my teeth a lot, and while my effort to stop did improve my symptoms dramatically, it did not eliminate them.
When I brought these symptoms to Dr. Eyeballs' attention, he examined my retinas closely and told me he saw no problem with them whatsoever. That they were perfectly healthy. Note that he was wrong, as a neurologist later discovered through the exact same sort of examination. My blurry spots were caused by irritation to the same, normal blind spot that we all have, which in turn was caused by growing pressure in my head. At that point, he ordered a cranial MRI. Given my optical migraine, he suspected a blood vessel pressing against my optic nerves.
That is not what we found.
Subscribe to:
Posts (Atom)