I have my first Observation MRI on Monday and I'm kind of nervous about it. I'm not nervous about the MRI it'self because I've had so many that I actually fall asleep during them lol but as I keep saying, "this ones for all the marbles!"
This is the MRI that will tell us whether Observation was the better choice to go with vs Chemo/Radiation. I meet with my Oncologist On April 21 for the results of that MRI so of course until that time I get to stew in my juices.
~Tara
Tuesday, April 5, 2011
Monday, March 28, 2011
Endocrinologist tomorrow
Tomorrow I meet with my Endocrinologist for the first time and I'm not sure what to expect. Just another specialist, just another day lol I have quite a few specialists these days that I am surprised I can keep them all straight! More poking, more proding and hopefully not too much torture:)
Sunday, March 27, 2011
Pain Management
I've learned that a big part of my Journey is Pain Management and a Balancing Act. Up until about 6 weeks or so ago I couldn't sleep at night because my head would just hurt, well it was tough to sleep at any point because the pressure I have in my head is a constant pressure but it is made worse by laying down. It really sucks because it isn't a "sometimes" thing or a "hit and miss" thing, it's ANYTIME I lay my head down. It's hard to explain how it hurts other than to say that, you know when you sleep a bit too long and you end up waking up with a pressure headache? Well imagine that many times compounded and that's how I feel after laying my head down for a mere 5 minutes, it has really sucked to try and sleep and I've kept my Husband up many nights while I'm crying in pain as we switch out pillows, blankets, clothing, toys, etc to try and find a position in which my head would stop hurting.
I've played around with different support wedges, types and styles of pillows, toys and even balled up clothing: When you are desperate for relief you'll try ANYTHING! What I have is that first and foremost, I have a sleep limit! I use to not only be able to but LOVE to sleep 8 hrs straight, 9 if you'd let me, 10+ if I was sick but I just can't do that now. Now I can sleep 5-7 hrs at a time max. Oh, and I bought a toy worm at Walmart and use it as a pillow, I kid you not:)
I can sleep at night in a block of 5-7 hrs, however the closer I creep to that 7 hr mark the more likely I am to wake up with a headache which unfortunately stays the whole day so I try to sleep 5 hrs at night and if needed I take a 1 or 2 hr nap in the day and that seems to be working. Oh yeah and about that worm lol It's a long plush toy that they had out in Walmart for Sprintime and I thought it might just be soft enough to do the trick and it does help when I need to lean my head to the left. It's odd, but it works. And quite frankly that's all I care about right now.
I've found out that Pain Management in itself is a balancing act but at least I've found what works. As for how long this pain will be with me, I don't know. Until I get a meeting with my Neurologist I won't really know if I should still be experiencing the pain that I am right now or not.
As for why I don't have a Neurologist at the moment, it's an annoying story lol I was referred to a Neurologist in late November by my Family Dr and met with him and liked him. This Neurologist was located in the Cancer Centre in Hamilton which just proves my theory of the one stop shopping for cancer patients! He said he would take me on as a patient if I wanted him as my Dr, but since The Cancer Centre is out of town and at that time I was dreading having to travel there for Chemo/Radiation I asked if I could get a referrel from him to someone back home in the city and he said fine. So I left with another referrel in hand and had my check up with my Family Dr who said that this latest referrel actually moved his practice to Hamilton (the city the Cancer Centre is in) and not St.Cath (where I live) so I said that if I'm going to have to travel to Hamilton that I would like the first Neurologist back because I liked him and he's at the Cancer Centre and I may as well keep all Drs & Documents in one spot. Ok, so you can have him back I'm told, we just have to track him down haha My Family Dr forgot who he referred me too and even though I know the Drs name I forgot how to spell it:) so I have his receptionist on a wild goose chase to track down a specific Neurologist at the Cancer Centre lol I so see my Family Dr on April 1 and hopefully I have my referrel at that point because there are quite a few questions that I have to the Neurologist.
I've played around with different support wedges, types and styles of pillows, toys and even balled up clothing: When you are desperate for relief you'll try ANYTHING! What I have is that first and foremost, I have a sleep limit! I use to not only be able to but LOVE to sleep 8 hrs straight, 9 if you'd let me, 10+ if I was sick but I just can't do that now. Now I can sleep 5-7 hrs at a time max. Oh, and I bought a toy worm at Walmart and use it as a pillow, I kid you not:)
I can sleep at night in a block of 5-7 hrs, however the closer I creep to that 7 hr mark the more likely I am to wake up with a headache which unfortunately stays the whole day so I try to sleep 5 hrs at night and if needed I take a 1 or 2 hr nap in the day and that seems to be working. Oh yeah and about that worm lol It's a long plush toy that they had out in Walmart for Sprintime and I thought it might just be soft enough to do the trick and it does help when I need to lean my head to the left. It's odd, but it works. And quite frankly that's all I care about right now.
I've found out that Pain Management in itself is a balancing act but at least I've found what works. As for how long this pain will be with me, I don't know. Until I get a meeting with my Neurologist I won't really know if I should still be experiencing the pain that I am right now or not.
As for why I don't have a Neurologist at the moment, it's an annoying story lol I was referred to a Neurologist in late November by my Family Dr and met with him and liked him. This Neurologist was located in the Cancer Centre in Hamilton which just proves my theory of the one stop shopping for cancer patients! He said he would take me on as a patient if I wanted him as my Dr, but since The Cancer Centre is out of town and at that time I was dreading having to travel there for Chemo/Radiation I asked if I could get a referrel from him to someone back home in the city and he said fine. So I left with another referrel in hand and had my check up with my Family Dr who said that this latest referrel actually moved his practice to Hamilton (the city the Cancer Centre is in) and not St.Cath (where I live) so I said that if I'm going to have to travel to Hamilton that I would like the first Neurologist back because I liked him and he's at the Cancer Centre and I may as well keep all Drs & Documents in one spot. Ok, so you can have him back I'm told, we just have to track him down haha My Family Dr forgot who he referred me too and even though I know the Drs name I forgot how to spell it:) so I have his receptionist on a wild goose chase to track down a specific Neurologist at the Cancer Centre lol I so see my Family Dr on April 1 and hopefully I have my referrel at that point because there are quite a few questions that I have to the Neurologist.
Friday, March 18, 2011
Just a little test
I have to run out today to the lab just for some tests to make sure my kidneys are A-OK. Apparently the contrast dye that they inject you with for MRI's and the like can screw with your Kidneys and can actually shut your kidneys down. I've been told it's rare and I'm not sure whether that was true or to just eleviate my fears but because I've had over 5 MRI's and CT Scans in the last 7 months and I'm due for an MRI next month, they need to check my kidney function.
At least today is a great day weatherwise to be venturing out:)
~Tara
At least today is a great day weatherwise to be venturing out:)
~Tara
Thursday, March 17, 2011
4 months Seizure free
I was just flipping through my appointment/record keeping book and noticed something: I have been Seizure free for 4 months. This is a good thing and the fact that I only had 1 seizure after the surgery is a good thing too. When I met with my Neuro Surgeon he said that seizures after surgery were quite common because things are resettling in your brain so not to panic because I an on anti convulsants, but the fact that I've only had one *knock-on-wood* is great.
I still am on anti-convulsants but I was told that I would be for at least 1 year post surgery at the dose I have been on since pre surgery and at that time they will ween me off if I'm not having seizures. One can hope that eventually one day I will be off of this medication and not need it and quite frankly a year will be here sooner than I can imagine.
One day at a time.
~Tara
I still am on anti-convulsants but I was told that I would be for at least 1 year post surgery at the dose I have been on since pre surgery and at that time they will ween me off if I'm not having seizures. One can hope that eventually one day I will be off of this medication and not need it and quite frankly a year will be here sooner than I can imagine.
One day at a time.
~Tara
Friday, March 11, 2011
The outcome of my Opthamologist appointment
I've said it before and I'll say it again: Having a really attractive Opthamologist with a sexy accent who happens to have an equally cute Intern seems to make it that much easier to be up at 4:30 in the morning to get my eyes looked at:) However, an appointment with an attractive Dr wasn't the reason for my appointment, it was just an added bonus:)
So I went to have my Visual Field Test at St.Josephs yesterday and met with Dr. Rodriguez for the results and the verdict is: There really is no change. I've been saying that I have noticed an improvement in my eyesight but he suspects that's just me learning to adapt to doing things in a different manner. Basically I'm compensating in other areas for the loss of vision that I've experienced.
I managed to yet again stump another Dr too! Yay! I enjoy doing that, it seems to be my thing lol He said that looking at my eyes and the deviation that I have in them that I should have a constant double vision and yet I don't. Immediately following surgery I had very little double vision and now I don't seem to have any at all and he said that by looking at my eyes I really should. The only thing he can figure is that my brain is again adapting and it's trying and succeeding at only recognzing and processing 1 image instead of both at a time that my eyes are seeing. Weird, but cool all at the same time!
So officially, on paper, according to the test results there are no improvements to my vision, I however apparently seem to be adapting well to the perminant deficeits that I now have due to the surgery. So while there are no official improvements there is also no bad news to report which is great. I'll take what I can get and that's just fine with me.
He wants to see me one more time to see how I'm doing but that isn't until Jan 2012. Until we meet again Dr.Rodriguez :)
In the larger scheme of things as well: If this is the ONLY perminant damage I come out of this experience with I will consider myself both lucky and blessed.
~Tara
So I went to have my Visual Field Test at St.Josephs yesterday and met with Dr. Rodriguez for the results and the verdict is: There really is no change. I've been saying that I have noticed an improvement in my eyesight but he suspects that's just me learning to adapt to doing things in a different manner. Basically I'm compensating in other areas for the loss of vision that I've experienced.
I managed to yet again stump another Dr too! Yay! I enjoy doing that, it seems to be my thing lol He said that looking at my eyes and the deviation that I have in them that I should have a constant double vision and yet I don't. Immediately following surgery I had very little double vision and now I don't seem to have any at all and he said that by looking at my eyes I really should. The only thing he can figure is that my brain is again adapting and it's trying and succeeding at only recognzing and processing 1 image instead of both at a time that my eyes are seeing. Weird, but cool all at the same time!
So officially, on paper, according to the test results there are no improvements to my vision, I however apparently seem to be adapting well to the perminant deficeits that I now have due to the surgery. So while there are no official improvements there is also no bad news to report which is great. I'll take what I can get and that's just fine with me.
He wants to see me one more time to see how I'm doing but that isn't until Jan 2012. Until we meet again Dr.Rodriguez :)
In the larger scheme of things as well: If this is the ONLY perminant damage I come out of this experience with I will consider myself both lucky and blessed.
~Tara
Tuesday, February 22, 2011
I'm keeping this blog too!
So I decided to keep this blog in addition to my new blog so now I have two! The other blog is on a cancer blog site and I will keep it solely for updates on my cancer appointments and things related directed to cancer. This blog I will use as my rambling blog to update about other medical issues I'm facing. So yep.....2 blogs I'll have.
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