Sunday, September 11, 2016
Wednesday, July 13, 2016
Resolution
Ahhh, time to breathe a sigh. The time for grief is over and the time for happiness is now. You see, I had my procedure, and everything went perfectly. PERFECTLY!
Two days ago, I arrived at the hospital for my procedure. Once I was there, the doctor had to explain all the risks of this procedure and complications as well as what could happen if I wasn't treated. All of the information was not good and really put perspective on what we are doing. If I lived in another time, I would not be here. Luckily, I've been able to utilize: brain surgery, radiation, medications and now interventional radiology. I just keep expanding my crew of doctors.
They wheeled me into a room. Gave me a medication in my IV that really stung and told me to breathe deeply for four breaths. I only can remember 3. Then I woke up in recovery feeling really tired and thirsty, but normal. The nurses diligently kept monitoring my neuro status, which was always good. Eventually they brought me to my hospital room where I got see Aaron and he told me that the doctor was able to get 100% of the fistula with no complications. I was elated! I've been feeling like I had a bad luck streak and things were not going to go well, but I was wrong and they did.
The rest of the day in the hospital I spent hooked up to the IV and took small walks around the beautiful 8th floor neuro ward (the best views in the hospital). My kids and parents visited me and we got some great take out from the Global Market. During this time I had pain, no dizziness, nothing. Even my vision was better. Well, I did have to pee a lot, but that was the IV fluids
When it got late, the family had to go, so the boredom set in a little. While I was walking, I met a friend whom I will likely never meet again, but we had a nice walk and conversation. She is still in the early phases of figuring out what is going on. I'll never learn what will happen to her, but I do feel that she has the capacity to deal with whatever comes. I watched some late night tv and tried to sleep a little, but the bed moved subtly every 10 minutes or so and I had the nurses come in to do neuro checks every so often. Not the best night sleep, but that is not why I was there.
In the morning the doctor came with some cool pictures (which I will post later) and sent me on my way.
I need to take it easy for about a week. The first few days, I can't do stairs, I can't drive. I can't lift anything over 10 pounds for a week. After that, I get to slowly resume life as normal. Well, really, better than normal. I've had time to think about a lot of things, and I am really trying to be more mindful and purposeful about my life choices. I also really want to run a marathon. I thought I was going to before this whole brain tumor thing. I'm going to get back to it. My body needs to be in the healthiest shape it can be because I can't predict what is going to happen and what will need to be done. I can give myself a healing edge and make sure I am healthy enough to soar through my life's hiccups.
What a difference a week makes!
Two days ago, I arrived at the hospital for my procedure. Once I was there, the doctor had to explain all the risks of this procedure and complications as well as what could happen if I wasn't treated. All of the information was not good and really put perspective on what we are doing. If I lived in another time, I would not be here. Luckily, I've been able to utilize: brain surgery, radiation, medications and now interventional radiology. I just keep expanding my crew of doctors.
They wheeled me into a room. Gave me a medication in my IV that really stung and told me to breathe deeply for four breaths. I only can remember 3. Then I woke up in recovery feeling really tired and thirsty, but normal. The nurses diligently kept monitoring my neuro status, which was always good. Eventually they brought me to my hospital room where I got see Aaron and he told me that the doctor was able to get 100% of the fistula with no complications. I was elated! I've been feeling like I had a bad luck streak and things were not going to go well, but I was wrong and they did.
The rest of the day in the hospital I spent hooked up to the IV and took small walks around the beautiful 8th floor neuro ward (the best views in the hospital). My kids and parents visited me and we got some great take out from the Global Market. During this time I had pain, no dizziness, nothing. Even my vision was better. Well, I did have to pee a lot, but that was the IV fluids
When it got late, the family had to go, so the boredom set in a little. While I was walking, I met a friend whom I will likely never meet again, but we had a nice walk and conversation. She is still in the early phases of figuring out what is going on. I'll never learn what will happen to her, but I do feel that she has the capacity to deal with whatever comes. I watched some late night tv and tried to sleep a little, but the bed moved subtly every 10 minutes or so and I had the nurses come in to do neuro checks every so often. Not the best night sleep, but that is not why I was there.
In the morning the doctor came with some cool pictures (which I will post later) and sent me on my way.
I need to take it easy for about a week. The first few days, I can't do stairs, I can't drive. I can't lift anything over 10 pounds for a week. After that, I get to slowly resume life as normal. Well, really, better than normal. I've had time to think about a lot of things, and I am really trying to be more mindful and purposeful about my life choices. I also really want to run a marathon. I thought I was going to before this whole brain tumor thing. I'm going to get back to it. My body needs to be in the healthiest shape it can be because I can't predict what is going to happen and what will need to be done. I can give myself a healing edge and make sure I am healthy enough to soar through my life's hiccups.
What a difference a week makes!
Tuesday, July 5, 2016
Optic Nerve Swelling
These last few weeks have been tough for me, and I know I needed to get things written down. To help inform friends and family, but also to hopefully let me start dealing with this stuff.
First off, I don't know why I think everything is all over and done, because apparently, that is not how my life works. Okay, brain tumor, check. I will just do a little surgery and then things will be okay. Well, the tumor is so big, surgery will not be enough, so guess what? Now I get radiation. The radiation was a success, but it sucked the life out of me when I got the somnolence syndrome, but after whoppin' doses of steroids, I prevailed and then on with normal life....
I was feeling pretty good and normal and was actually trying to exercise more. I ended up doing some jumping up and down for about 2 minutes and then my eye and mouth started twitching uncontrollably. I looked in the mirror and my mouth was pursed and I was not in control of it. It lasted about 10 seconds or so, then I was back to normal. Still, it did scare me. I contacted my neurosurgeon, and they weren't too impressed, so I just did my day to day thing with no exercising (which was depressing for me).
Then about 2 weeks ago I went to a Target clinic to get more contacts and during the visit, the optometrist got all worked up and took too long and got me all scared and called my neurosurgeon and an ophthalmologist. I had an emergent MRI and multiple appointments and it showed that I had optic nerve swelling. This left untreated could cause me to go BLIND. AHHHH. I'm already deaf in one ear and now there is a chance I will be blind too.
So, what's a girl like me to do? Well, everyone's first choice was to throw huge doses of steroids at me to see if that changes anything. Steroids just make me feel horrible! I am exhausted, yet I can't sit still, I can't sleep, I'm not motivated to do anything, I have no patience and my skin is crawling. So that is what I felt like, and my nerves still remained swollen.
Since that didn't work, my neurosurgeon talked with an interventional radiologist and today I underwent an angiography and I now know what is going on. I have a collection of subdural fistulas in the area of radiation. This was caused from the radiation. This is causing the optic nerve problems, and has also caused something called pulsatile tinnitis (I hear my heart beat all the time!).
The good news is it is treatable. Next Monday, they will again send a small catheter up my groin and now this time will inject a polymer into the area of the fistula to shut it completely down. If everything goes well, I'm cured! Speaking with the interventional radiologist, it sounds like it should go well, but who knows. My path is different, so why should it be easy. I'll stay one night in the hospital, and then hopefully I can heal and move on.
Hmmm, move on. It seems like every time I try to do that, something holds me back. People at my age seems to think about the future and plan for it. Maybe I don't get that luxury anymore. I might just need to put in all the stops in life right now and make my life the most fullfilling it can be, because I can't expect ANYTHING. I need to create more, love more, life more. And right now, I need to grieve a little, just a little and let me not be the strong one for a while.
First off, I don't know why I think everything is all over and done, because apparently, that is not how my life works. Okay, brain tumor, check. I will just do a little surgery and then things will be okay. Well, the tumor is so big, surgery will not be enough, so guess what? Now I get radiation. The radiation was a success, but it sucked the life out of me when I got the somnolence syndrome, but after whoppin' doses of steroids, I prevailed and then on with normal life....
I was feeling pretty good and normal and was actually trying to exercise more. I ended up doing some jumping up and down for about 2 minutes and then my eye and mouth started twitching uncontrollably. I looked in the mirror and my mouth was pursed and I was not in control of it. It lasted about 10 seconds or so, then I was back to normal. Still, it did scare me. I contacted my neurosurgeon, and they weren't too impressed, so I just did my day to day thing with no exercising (which was depressing for me).
Then about 2 weeks ago I went to a Target clinic to get more contacts and during the visit, the optometrist got all worked up and took too long and got me all scared and called my neurosurgeon and an ophthalmologist. I had an emergent MRI and multiple appointments and it showed that I had optic nerve swelling. This left untreated could cause me to go BLIND. AHHHH. I'm already deaf in one ear and now there is a chance I will be blind too.
So, what's a girl like me to do? Well, everyone's first choice was to throw huge doses of steroids at me to see if that changes anything. Steroids just make me feel horrible! I am exhausted, yet I can't sit still, I can't sleep, I'm not motivated to do anything, I have no patience and my skin is crawling. So that is what I felt like, and my nerves still remained swollen.
Since that didn't work, my neurosurgeon talked with an interventional radiologist and today I underwent an angiography and I now know what is going on. I have a collection of subdural fistulas in the area of radiation. This was caused from the radiation. This is causing the optic nerve problems, and has also caused something called pulsatile tinnitis (I hear my heart beat all the time!).
The good news is it is treatable. Next Monday, they will again send a small catheter up my groin and now this time will inject a polymer into the area of the fistula to shut it completely down. If everything goes well, I'm cured! Speaking with the interventional radiologist, it sounds like it should go well, but who knows. My path is different, so why should it be easy. I'll stay one night in the hospital, and then hopefully I can heal and move on.
Hmmm, move on. It seems like every time I try to do that, something holds me back. People at my age seems to think about the future and plan for it. Maybe I don't get that luxury anymore. I might just need to put in all the stops in life right now and make my life the most fullfilling it can be, because I can't expect ANYTHING. I need to create more, love more, life more. And right now, I need to grieve a little, just a little and let me not be the strong one for a while.
Friday, July 1, 2016
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