The day of the MRI, I had a meltdown of sorts.
I spent the majority of the morning working up the courage to go talk to my boss.
As I mentioned in a previous post, I've had a really hard time with my job since about August. I was so completely overwhelmed, I did not even know where to start, and several new developments on Monday morning just pushed me over the edge.
I had tossed the idea around to my long term disability insurance company about changing jobs a 4th time since my surgery. He said that they actually have a rehabilitation department that would assist me in job placement and just let him know when my last day is. Funny, I've been working with this company for at least the last 2 years, and no one ever mentioned that for the 2nd job change... or the 3rd. I'll spare you the boring details on that subject.
I finally screw up the nerve and walk into my boss's office. I sit down in the chair and start sobbing. I tell him in something that may or may not have sounded like English that I was at the point where I felt I couldn't continue on and I did not want the district to lose money because of my disability. He was absolutely understanding, told me I should go home and actually was worried about me driving. He wanted to know more details about how long I thought I could stay and exactly what I wanted to do. I told him I needed to think about it, talk to Eric and the neuropsychologist, and I would get back with him.
I talked to Eric who backed me, he sees the end result of this more than anyone else and I had an appointment with the neuropsychologist the next at afternoon. This doctor has been seeing me since 2006 and found through neuropsychological testing that I had deficits in several areas since the surgery and that I was worse since my testing immediately after the surgery.
She agreed that a job change was necessary and actually told me that she herself wasn't sure that the school job was the best fit. However, I was insistent (mostly because the schedule looked so good) and it was my life. Now... I will be leaving my job at the end of this month and we will be starting to look at some other positions that I may be able to handle better and she is firm on no more than 20 hours a week. I really have no idea what I *could* do. Some part time jobs would really exploit my memory deficits, so we shall see what comes up.
The down side is the money situation. I will receive disability benefits until the end of this May, unless it's determined that I cannot do ANY job. I feel that this is unlikely. I believe that we'll be able to make significant cuts in our spending, and Nathaniel will be starting school in the fall, so that may end up taking care of itself.
The up side is that we will absolutely make the most informed decision this time instead of just snapping up any job in a panic. And HOPEFULLY I will be able to return to some semblance of a normal life. Right now all of my time, energy and resources go to this job. I need to be a good mom, a good wife, and a better person. I am really depending on this helping.
Wednesday, January 14, 2009
Latest MRI
Monday night was the date of the aforementioned MRI. I have shifted all of my care to "THE" Ohio State University medical center. This is mostly because I have been much more pleased with their treatment and frankly, I think that the last group of doctors missed some things, not just with the brain tumor situation.
Finding the radiology department (or anything for that matter) on the OSU campus is an adventure. It took longer than I expected, but that was because E was driving and was trying to take a "shortcut." One thing I need always in my life is consistency or I get easily confused. We make it there with zero time to spare. I am checked in for the procedure at about 8:40 pm, scheduled to start at 9:15 pm and start popping my xanax which takes about 30 minutes to start working. The tech comes out and says that they want to take me back right away, and we tell them that we need time for the meds to work. She said, "It will be a few minutes... I mean, a little while."
We were waiting... and waiting... and waiting... and waiting.... I pop another half of a xanax, thinking they'll be in to get me any minute... another 20 minutes... another half. A full hour goes by before they take me back.
They get me all set up, ear plugs, a cute little scented eye cover, and they even have a picture of a Hawaii looking setting on the ceiling. They are trying to remind you to find your "happy place" while you are in this big coffin like tube, pretending not to go completely insane.
What they didn't count on are my incredibly small veins. This procedure requires an IV or some other method of injecting dye into your system. This allows them to see potentially active cancer cells. There should be none in my brain at this point because so much of the surrounding tissue was removed, but it's standard procedure. After 20 minutes of what can only be described as terror and torture at the same time, they gave up and just started the scans. They asked me if I was okay before they started... "you look a little pale," she says. Well, you just spent 20 minutes putting needles in my arm and trying to move them around into my veins because they are too small or you didn't poke me in the right spot. A 200 pound football player would be "a little pale" too. I'm a tough cookie, so I say I'm okay and tell them to get started.
By this time... the meds have worn off. They push me back into the tube and I start shaking. It's very difficult to describe the way that you feel and what happens when you have a scan. I'll do my best.
Imagine...
being in an enclosed space in which you aren't allowed to move at all and you couldn't even if you wanted to because there is no space
your head is completely locked into place with a cage surrounding your head
you spend anywhere from 2.5 - 20 minutes at a time being exposed to blips, grinding noises, knocking, and buzzing all around your head without a break
at some points, in addition to the noise, the machine is moving so your head is being thumped up and down on the table
(this feels like what I would imagine being in a dryer would feel like)
there is no one talking to you during this time and you have no idea if the person in the room outside is there, or taking a coffee break, or just looking through the glass a laughing at you in your misery
I was several times at the point where I wanted nothing more to escape. I could NOT stop shaking, which made me feel worse. Between one of the sections of the test I asked to be moved out so that I could get some air. Being moved out only meant sliding out of the tube and laying there without moving. You can't get up and move around because the images have to be in exactly the same location to be viewed properly.
After an hour of it all, they pulled me out and said that they wanted to do the injection. I sweetly but firmly told them that I had absolutely had it. I just couldn't do anymore and I knew with my veins as bad as they were, there was NO way that they were going to be able to do the injection.
We did not get home until midnight and I was absolutely exhausted. I'm not sure if the neurologist will send me back for another scan, I hope not. I enjoy the standard 12 months in between these joyful experiences.
However, this is a necessary evil for the rest of my life. Though my tumor was a slow growing one that usually is cured by surgery, it is still necessary to be vigilant in my follow up.
One positive note... I slept hard as a rock that night. ;)
Finding the radiology department (or anything for that matter) on the OSU campus is an adventure. It took longer than I expected, but that was because E was driving and was trying to take a "shortcut." One thing I need always in my life is consistency or I get easily confused. We make it there with zero time to spare. I am checked in for the procedure at about 8:40 pm, scheduled to start at 9:15 pm and start popping my xanax which takes about 30 minutes to start working. The tech comes out and says that they want to take me back right away, and we tell them that we need time for the meds to work. She said, "It will be a few minutes... I mean, a little while."
We were waiting... and waiting... and waiting... and waiting.... I pop another half of a xanax, thinking they'll be in to get me any minute... another 20 minutes... another half. A full hour goes by before they take me back.
They get me all set up, ear plugs, a cute little scented eye cover, and they even have a picture of a Hawaii looking setting on the ceiling. They are trying to remind you to find your "happy place" while you are in this big coffin like tube, pretending not to go completely insane.
What they didn't count on are my incredibly small veins. This procedure requires an IV or some other method of injecting dye into your system. This allows them to see potentially active cancer cells. There should be none in my brain at this point because so much of the surrounding tissue was removed, but it's standard procedure. After 20 minutes of what can only be described as terror and torture at the same time, they gave up and just started the scans. They asked me if I was okay before they started... "you look a little pale," she says. Well, you just spent 20 minutes putting needles in my arm and trying to move them around into my veins because they are too small or you didn't poke me in the right spot. A 200 pound football player would be "a little pale" too. I'm a tough cookie, so I say I'm okay and tell them to get started.
By this time... the meds have worn off. They push me back into the tube and I start shaking. It's very difficult to describe the way that you feel and what happens when you have a scan. I'll do my best.
Imagine...
being in an enclosed space in which you aren't allowed to move at all and you couldn't even if you wanted to because there is no space
your head is completely locked into place with a cage surrounding your head
you spend anywhere from 2.5 - 20 minutes at a time being exposed to blips, grinding noises, knocking, and buzzing all around your head without a break
at some points, in addition to the noise, the machine is moving so your head is being thumped up and down on the table
(this feels like what I would imagine being in a dryer would feel like)
there is no one talking to you during this time and you have no idea if the person in the room outside is there, or taking a coffee break, or just looking through the glass a laughing at you in your misery
I was several times at the point where I wanted nothing more to escape. I could NOT stop shaking, which made me feel worse. Between one of the sections of the test I asked to be moved out so that I could get some air. Being moved out only meant sliding out of the tube and laying there without moving. You can't get up and move around because the images have to be in exactly the same location to be viewed properly.
After an hour of it all, they pulled me out and said that they wanted to do the injection. I sweetly but firmly told them that I had absolutely had it. I just couldn't do anymore and I knew with my veins as bad as they were, there was NO way that they were going to be able to do the injection.
We did not get home until midnight and I was absolutely exhausted. I'm not sure if the neurologist will send me back for another scan, I hope not. I enjoy the standard 12 months in between these joyful experiences.
However, this is a necessary evil for the rest of my life. Though my tumor was a slow growing one that usually is cured by surgery, it is still necessary to be vigilant in my follow up.
One positive note... I slept hard as a rock that night. ;)
Saturday, January 10, 2009
the next chapter in this little adventure
Well, I haven't wrote much about my head lately. I suppose that it's time. I am constantly thinking about it, I don't know if I'll ever come to the point at which I don't think about it 50 times a day on a good day, or constantly on a bad day.
A lot of things are going on now that have made it a major part of my day to day living. First, I am really struggling at the new job, which isn't so new now. I've been there just over a year. After days of extra working or extreme stress, I have these episodes which seem like a mixture between a panic attack and a seizure. The doctors have not been able to successfully diagnose them as anything, and of course I'm medicated for both seizures and anxiety. Friday, I had yet another one. I am supposed to be taking it easy and the point of this job was not what it's turned out to be. There is entirely too much stress and responsibility, but my bosses seem to understand and some help is on the way. I think that my boss's motivation are more selfish than anything, because the fiscal situation at the school is so dire that anything I miss is money lost and me leaving right now would be devastating.
I went to see my new neurologist for the second time. I was pretty depressed that week, and truthfully haven't been feeling much better. I spent a lot of time talking about my issues with employment and she actually asked me if I'd thought about not working. She said, of course, if you need to or you get something out of it..... well, I'm beginning to get less and less out of it honestly. When I work full time, I can't remember important things like teeth brushing, showers, taking a pee for f's sake. I don't have the energy or cognitive ability to do something as simple as preparing dinner. I really think that I'm at the end of it. But, of course, failure for me is not an option, so I tell her that I'm going to keep working at it and that I couldn't see not working. She mentioned going to three days a week. I don't know a job that would allow me to do that. She said that she's thrilled that I am doing so good. When I looked at her funny, because obviously, she doesn't live my life, so that statement confused me.... she said, "At least you haven't given up yet." I have to tell you, many days, that seems like the best option on the horizon.
The other thing that came out of the appointment is that I will be having an MRI on Monday. I HATE HATE HATE the whole process. The MRI itself is terribly nervewracking and until you are able to take an ipod in there (no metal allowed) and have some kind of meditation or ambient spa music running, you are constantly aware that you are in the space pretty close to a coffin and you aren't getting out until they release you. The noise inside resembles chinese torture and keeps you constantly reminded that you want nothing more than to get the f*ck out of there. The worst part is not the actual procedure, it's the waiting before and after. I have a hard time coping once the appointment is set, mostly nervous about the procedure itself... and waiting for the outcome. This new neurologist makes the game even *more* fun, because I do not have my next appointment with the neurologist until 5/5 (2 days before my *5* year anniversary of the surgery). This means that I will most likely get my results over the phone. Or if it's bad news, I'll know it because they'll call me in for an appointment. At least with the neurosurgeon in Cleveland, I had the scan and the results the same day.
I'm just really crabby now about the whole thing. I can't feel comfortable doing my job anymore, I am tired of the physical problems, and the psychological and cognitive are the worst. Things are not getting better. I have really noticed the irritabilitiy lately and it's hard to say at this point if it's me, or the drugs, or my head, or if I just enjoy being pissed off. I have had no patience for things going wrong and the more things that go wrong, the worse I get. My mind is constantly obsessing over my health. Why don't I feel well, am I losing my mind, why wont that pain and that knot in my neck go away... should I ask them to do an MRI of it next week... how am I ever going to make it.
So tonight I try to relax, we watched The Machinist . It was the best movie that I've seen in some time and I enjoyed Christian Bale without his growling Batman voice. My take on the film was interesting though.... "At least I am not as crazy as *that* guy. I'm not seeing and talking to folks that aren't there... I guess it could be worse. I laid on the couch with a heating pad wrapped around me because my muscles are so tense. Never being relaxed seems to have many physical side effects and that is the most obvious one for me. Because of that, or some other tumor growing in my neck, I've been really uncomfortable all day. So, there is something else for me to fixate on.
I just have no idea at this point what I would give to feel "normal" again. Please keep your jokes about my relative normality to yourselves. :p
I'd like to sit at a restaurant and eat without worrying if it's too loud or disruptive or if I'm going
to have freak out session at some point during the evening. Even when I'm not in full on panic, my mind is running non-stop. Thinking about every little twinge in my body, in my head, worrying about work, or Nathaniel, or just this fog of worry and fear. So often when I'm at this point, like last night, I just want to write and purge it all, but I am too exhausted to do it. If I wrote every time that the mood struck me, there would be volumes. Instead I avoid it to prevent dealing with it, or get sidetracked. Much of the time, it's hard to even put into words how I feel.
Okay, I'm going to drop this for now, I have no idea where else I can go with this tonight. However, there will be more coming up, probably a lot more. Sorry to be so depressing, but this is life right now.
A lot of things are going on now that have made it a major part of my day to day living. First, I am really struggling at the new job, which isn't so new now. I've been there just over a year. After days of extra working or extreme stress, I have these episodes which seem like a mixture between a panic attack and a seizure. The doctors have not been able to successfully diagnose them as anything, and of course I'm medicated for both seizures and anxiety. Friday, I had yet another one. I am supposed to be taking it easy and the point of this job was not what it's turned out to be. There is entirely too much stress and responsibility, but my bosses seem to understand and some help is on the way. I think that my boss's motivation are more selfish than anything, because the fiscal situation at the school is so dire that anything I miss is money lost and me leaving right now would be devastating.
I went to see my new neurologist for the second time. I was pretty depressed that week, and truthfully haven't been feeling much better. I spent a lot of time talking about my issues with employment and she actually asked me if I'd thought about not working. She said, of course, if you need to or you get something out of it..... well, I'm beginning to get less and less out of it honestly. When I work full time, I can't remember important things like teeth brushing, showers, taking a pee for f's sake. I don't have the energy or cognitive ability to do something as simple as preparing dinner. I really think that I'm at the end of it. But, of course, failure for me is not an option, so I tell her that I'm going to keep working at it and that I couldn't see not working. She mentioned going to three days a week. I don't know a job that would allow me to do that. She said that she's thrilled that I am doing so good. When I looked at her funny, because obviously, she doesn't live my life, so that statement confused me.... she said, "At least you haven't given up yet." I have to tell you, many days, that seems like the best option on the horizon.
The other thing that came out of the appointment is that I will be having an MRI on Monday. I HATE HATE HATE the whole process. The MRI itself is terribly nervewracking and until you are able to take an ipod in there (no metal allowed) and have some kind of meditation or ambient spa music running, you are constantly aware that you are in the space pretty close to a coffin and you aren't getting out until they release you. The noise inside resembles chinese torture and keeps you constantly reminded that you want nothing more than to get the f*ck out of there. The worst part is not the actual procedure, it's the waiting before and after. I have a hard time coping once the appointment is set, mostly nervous about the procedure itself... and waiting for the outcome. This new neurologist makes the game even *more* fun, because I do not have my next appointment with the neurologist until 5/5 (2 days before my *5* year anniversary of the surgery). This means that I will most likely get my results over the phone. Or if it's bad news, I'll know it because they'll call me in for an appointment. At least with the neurosurgeon in Cleveland, I had the scan and the results the same day.
I'm just really crabby now about the whole thing. I can't feel comfortable doing my job anymore, I am tired of the physical problems, and the psychological and cognitive are the worst. Things are not getting better. I have really noticed the irritabilitiy lately and it's hard to say at this point if it's me, or the drugs, or my head, or if I just enjoy being pissed off. I have had no patience for things going wrong and the more things that go wrong, the worse I get. My mind is constantly obsessing over my health. Why don't I feel well, am I losing my mind, why wont that pain and that knot in my neck go away... should I ask them to do an MRI of it next week... how am I ever going to make it.
So tonight I try to relax, we watched The Machinist . It was the best movie that I've seen in some time and I enjoyed Christian Bale without his growling Batman voice. My take on the film was interesting though.... "At least I am not as crazy as *that* guy. I'm not seeing and talking to folks that aren't there... I guess it could be worse. I laid on the couch with a heating pad wrapped around me because my muscles are so tense. Never being relaxed seems to have many physical side effects and that is the most obvious one for me. Because of that, or some other tumor growing in my neck, I've been really uncomfortable all day. So, there is something else for me to fixate on.
I just have no idea at this point what I would give to feel "normal" again. Please keep your jokes about my relative normality to yourselves. :p
I'd like to sit at a restaurant and eat without worrying if it's too loud or disruptive or if I'm going
to have freak out session at some point during the evening. Even when I'm not in full on panic, my mind is running non-stop. Thinking about every little twinge in my body, in my head, worrying about work, or Nathaniel, or just this fog of worry and fear. So often when I'm at this point, like last night, I just want to write and purge it all, but I am too exhausted to do it. If I wrote every time that the mood struck me, there would be volumes. Instead I avoid it to prevent dealing with it, or get sidetracked. Much of the time, it's hard to even put into words how I feel.
Okay, I'm going to drop this for now, I have no idea where else I can go with this tonight. However, there will be more coming up, probably a lot more. Sorry to be so depressing, but this is life right now.
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