Not a lot new to report in the past week. Christmas was nice with all our family over, and the bonus was with so many people over I could nap when ever I wanted to (which I did 2x's/day). One thing I didn't mention before was that for the last month or so, since I've been having such trouble sleeping, I've been taking Gravol before I go to bed. I know it's not the smartest thing, but without it I have such bad insomnia that I spend 2-3 hours a night wandering our house. I thought of asking my doctor for sleeping pills, but I'm worried about how addictive they might be.
So the only other thing I think I have to report is that I had a bit of a "poor me" moment the other night. I was tucking our girls into bed and both had asked me to cuddle them for a while. Now since I am unable to lay flat, it's not really possible and I was so frustrated that this lousy thing is stopping me from being the Mom I want to be. Oh well, I just have to keep reminding myself that it's only for 1 month more. Then the irony is that I likely won't be able to do anything but lay down...at least for a while.
So the waiting continues. I did try to call Dr. Chen office today to get my surgery date, but the office is closed until January 4th.
Tuesday, December 29, 2009
Thursday, December 24, 2009
Wow, what a difference a few hours can make on a perspective
How strange, last night before I went to bed I had sent a friend an e-mail telling her how I was so bummed about loosing my hearing in my left ear. As I'm typing right now it's 4:00 in the morning and I have been awake since 3:00. I woke up quite suddenly from a splitting headache and am feeling just generally awful. I was sleeping on my tower of pillows, but I think I must have slept on my back and had my head turned to the side, which is always enough to make my head hurt, especially if it's that way for more then 15 minutes. I'm also so nauseous, that's it's a bit of a struggle to keep myself from throwing up. Yuck! Crazy thing, if I was giving a chance at the moment to give up my hearing in my ear to feel better right now, I'd do it in a heartbeat! It's times like this that it's very clear to me that this thing in my head is not a little thing and really, loosing hearing in 1 ear is not that big of deal compared to how awful I feel right now.
Fast forward to 7:30....
So I ended up falling back to sleep around 5:00, after I did get sick. It's so yucky! I did finally manage to keep 2 Tylenol #1's down as well as 2 Advil so the headache did get a bit better. My dear children totally cooperated this morning by either just stayed in their beds, or sleeping until 7:00. I did still wake up with a dull headache, but nothing that 2 more Tylenol #1's can't fix. It's so weird though, I have some mornings where I sleep better, but wake up feeling terrible. This morning, even though I'm tired, I actually don't feel too bad...likely the drugs. My balance is off again (I kind of feel tipsy on this chair) and as I'm typing here, my vision is not great. The upside is that even though I'm feeling better this morning I am still feeling OK about loosing my hearing. As I mentioned before, feeling so terrible last night makes me realize how serious this thing is and to give up an ear is a small thing. I just keep thinking how very fortunate I am to live in this day and age and not 100 years ago (or even less). For people who would have had this back then, it would have been a pretty lousy way to go.
I do need to mention 2 other things. First I want to mention my friend Julie. This girl has been an amazing friend to me. First, when I was getting married she arranged so much for me (including our stag and doe). Then when I was 8 1/2 months pregnant and moving into our new house, she and my friend Diane, drove out from the GTA to help us move and basically unpacked almost everything for me. Then when our first baby was born she filled my freezer with meals. The latest amazing thing this dear friend has done for me, is when she found out that I had my appointment with the Neurosurgeon, she sent me an e-mail from London England (where she is now living) and told me that when she came home for Christmas she's going to drive up and watch our kiddies for me. I don't know how I'll ever pay her back, but her help has been so wonderful over the years. Love you Julie!
I next have to mention how I'm feeling sad. As some of you may know, my beautiful Niece (not just in looks but in the woman she was) and her fiance passed away in a car crash on Dec 4th. They were both supposed to come to our house for Christmas, as they had last year. As the time gets closer as to when they would have arrived, it gets a bit emotional. Having said that, I also keep thinking how awesome it must be for them to be able to celebrate Christ's birth with Christ. It sure makes the thought of celebrating this time of year with Aunts and Uncles a pale comparison. There will definitely be 2 empty spots in our house, which makes me think of how very hard it is for my Sister, Brother-in-law and their kids as well as Gavin's family. To my sister and family, we love you so much!
Fast forward to 7:30....
So I ended up falling back to sleep around 5:00, after I did get sick. It's so yucky! I did finally manage to keep 2 Tylenol #1's down as well as 2 Advil so the headache did get a bit better. My dear children totally cooperated this morning by either just stayed in their beds, or sleeping until 7:00. I did still wake up with a dull headache, but nothing that 2 more Tylenol #1's can't fix. It's so weird though, I have some mornings where I sleep better, but wake up feeling terrible. This morning, even though I'm tired, I actually don't feel too bad...likely the drugs. My balance is off again (I kind of feel tipsy on this chair) and as I'm typing here, my vision is not great. The upside is that even though I'm feeling better this morning I am still feeling OK about loosing my hearing. As I mentioned before, feeling so terrible last night makes me realize how serious this thing is and to give up an ear is a small thing. I just keep thinking how very fortunate I am to live in this day and age and not 100 years ago (or even less). For people who would have had this back then, it would have been a pretty lousy way to go.
I do need to mention 2 other things. First I want to mention my friend Julie. This girl has been an amazing friend to me. First, when I was getting married she arranged so much for me (including our stag and doe). Then when I was 8 1/2 months pregnant and moving into our new house, she and my friend Diane, drove out from the GTA to help us move and basically unpacked almost everything for me. Then when our first baby was born she filled my freezer with meals. The latest amazing thing this dear friend has done for me, is when she found out that I had my appointment with the Neurosurgeon, she sent me an e-mail from London England (where she is now living) and told me that when she came home for Christmas she's going to drive up and watch our kiddies for me. I don't know how I'll ever pay her back, but her help has been so wonderful over the years. Love you Julie!
I next have to mention how I'm feeling sad. As some of you may know, my beautiful Niece (not just in looks but in the woman she was) and her fiance passed away in a car crash on Dec 4th. They were both supposed to come to our house for Christmas, as they had last year. As the time gets closer as to when they would have arrived, it gets a bit emotional. Having said that, I also keep thinking how awesome it must be for them to be able to celebrate Christ's birth with Christ. It sure makes the thought of celebrating this time of year with Aunts and Uncles a pale comparison. There will definitely be 2 empty spots in our house, which makes me think of how very hard it is for my Sister, Brother-in-law and their kids as well as Gavin's family. To my sister and family, we love you so much!
Monday, December 21, 2009
The big appointment
So we're back from the appointment with the Neurosurgeon. We ended up having to wait 2 hours in the waiting room, but considering that my family doctor wouldn't have gotten me an appointment until Feb 17th, an extra couple hours isn't too bad. So when Dr. Chen actually did come to see us, he was quite up beat, but Jeff thought that his mood/face changed after he started to look at my MRI (I couldn't see his face as I was sitting behind him). He was surprised at the size of my tumour and also said he couldn't believe that I still had such good hearing. He said that for the size I should have had a large degree of hearing loss. From further in the conversation I think his concern was also about where the tumour is putting pressure as well as all the symptoms I'm already experiencing.
So he started the discussion by talking about why I'm feeling the symptoms now and didn't a year ago. Basically being pregnant and the hormones and increased blood flow makes this slow growing tumour grow quickly. He thinks I've had this for at least 2-3 years (I thought it would have been longer, but he said it's hard to tell). He then laid out the options for us. He said there are 3 options with 2 of them not being very good. He first talked about doing nothing and just waiting and seeing. He said that the pro with this is that I'll keep my hearing, but the risk is that this tumour is already quite large and waiting will just increase the risks when it does need to come out. Waiting will start to increase my symptoms and some of them becoming serious. I would also have to have MRIs every 8 months.
The next option he talked about was radiation, but he said that actually doesn't get rid of the tumour and wouldn't necessarily get rid of the symptoms. There is also the potential for complications down the road relating to the actually radiation. On top of that he thinks that they wouldn't even do radiation on a tumour my size.
The last option is surgery. The downside to surgery is that recovery is going to take up to 6 months and I will have 100% hearing loss. He said that with the size of my tumour and it's location they wouldn't even attempt hearing preservation as there is increased risk (there is more brain compression with this option) and the chance of it actually keeping my hearing is only 35%.
He then did a bunch of test including me touching my finger from my nose to his finger as he moved it about. He tested how much of my face and mouth was numb. And then did some balance test. He made me stand with my feet together and then made me close my eyes. It was really annoying but I kept falling backward. I then had to walk looking straight ahead and had to put 1 foot in front of the other, heel to toe. I did OK for a couple steps, but then kept falling over. I'm not really sure why, but I found this very emotional. I guess it was that even with all the symptoms I already have, this was 1 more thing that I couldn't do that I didn't realize. The Doctor also explained to me that the reason I can't lay flat is because of increased blood flow to your head when you are laying flat and the tumour is also putting increased pressure were it should not.
So with all this information, we pretty much let him know that I'm ready for the surgery as soon as possible. I so want to get back to normal. I know that I'll feel worse after surgery, but I don't care if I know that every day it's going to get better. Right now I'm at a stage that every day I'm getting worse, so to change that trend would be great. The good news on this front is that it looks like I'm going to get a date for late January. That would be a month before my family doctor would have even gotten my 1st appointment with the surgeon.
My sister Janet asked me how I felt after the appointment and I think that I'm a little disappointed. I had really hoped, after meeting Dr. Niaberg, that the fact I have good hearing would increase my chances of keeping it. I'm also a little down about the recovery time. I was really hoping that with new surgical advances (like using GPS technology to target the tumour during surgery) that recovery would be a month or 2. It's a little sad to hear that I can't expect to start getting back to normal until the summer. It's funny because these 2 thing's I'm down on, are things that I had actually prepared myself for when I first found out that I had this. During the coarse of the last 6 weeks I had allowed myself to become optimistic about it, and now to hear from the actually surgeon that my hopes are not likely is a little hard. I know that given a day or 2 I'll be OK with it again, it's just a case of getting my mind around it.
So now we just have to wait to hear from Dr. Chen's office with an exact surgery date and then make plans of what we're going to do with our family during surgery and my recovery. On to the next step and even with my disappointments of today, I'm VERY happy that things are moving forward.
So he started the discussion by talking about why I'm feeling the symptoms now and didn't a year ago. Basically being pregnant and the hormones and increased blood flow makes this slow growing tumour grow quickly. He thinks I've had this for at least 2-3 years (I thought it would have been longer, but he said it's hard to tell). He then laid out the options for us. He said there are 3 options with 2 of them not being very good. He first talked about doing nothing and just waiting and seeing. He said that the pro with this is that I'll keep my hearing, but the risk is that this tumour is already quite large and waiting will just increase the risks when it does need to come out. Waiting will start to increase my symptoms and some of them becoming serious. I would also have to have MRIs every 8 months.
The next option he talked about was radiation, but he said that actually doesn't get rid of the tumour and wouldn't necessarily get rid of the symptoms. There is also the potential for complications down the road relating to the actually radiation. On top of that he thinks that they wouldn't even do radiation on a tumour my size.
The last option is surgery. The downside to surgery is that recovery is going to take up to 6 months and I will have 100% hearing loss. He said that with the size of my tumour and it's location they wouldn't even attempt hearing preservation as there is increased risk (there is more brain compression with this option) and the chance of it actually keeping my hearing is only 35%.
He then did a bunch of test including me touching my finger from my nose to his finger as he moved it about. He tested how much of my face and mouth was numb. And then did some balance test. He made me stand with my feet together and then made me close my eyes. It was really annoying but I kept falling backward. I then had to walk looking straight ahead and had to put 1 foot in front of the other, heel to toe. I did OK for a couple steps, but then kept falling over. I'm not really sure why, but I found this very emotional. I guess it was that even with all the symptoms I already have, this was 1 more thing that I couldn't do that I didn't realize. The Doctor also explained to me that the reason I can't lay flat is because of increased blood flow to your head when you are laying flat and the tumour is also putting increased pressure were it should not.
So with all this information, we pretty much let him know that I'm ready for the surgery as soon as possible. I so want to get back to normal. I know that I'll feel worse after surgery, but I don't care if I know that every day it's going to get better. Right now I'm at a stage that every day I'm getting worse, so to change that trend would be great. The good news on this front is that it looks like I'm going to get a date for late January. That would be a month before my family doctor would have even gotten my 1st appointment with the surgeon.
My sister Janet asked me how I felt after the appointment and I think that I'm a little disappointed. I had really hoped, after meeting Dr. Niaberg, that the fact I have good hearing would increase my chances of keeping it. I'm also a little down about the recovery time. I was really hoping that with new surgical advances (like using GPS technology to target the tumour during surgery) that recovery would be a month or 2. It's a little sad to hear that I can't expect to start getting back to normal until the summer. It's funny because these 2 thing's I'm down on, are things that I had actually prepared myself for when I first found out that I had this. During the coarse of the last 6 weeks I had allowed myself to become optimistic about it, and now to hear from the actually surgeon that my hopes are not likely is a little hard. I know that given a day or 2 I'll be OK with it again, it's just a case of getting my mind around it.
So now we just have to wait to hear from Dr. Chen's office with an exact surgery date and then make plans of what we're going to do with our family during surgery and my recovery. On to the next step and even with my disappointments of today, I'm VERY happy that things are moving forward.
Thursday, December 17, 2009
Less then a week away
So I have less then a week until my appointment with the neurosurgeon. I am getting so anxious to get the "ball rolling". I have had a few more developments in the last few weeks. Starting about 1 1/2 weeks ago I am no longer able to lay flat. If I do I get a pounding in my ears and within 15-20 minutes I develop a splitting headache. The upside to this is that I discovered that by sleeping propped up I am getting a better night sleep then I have in months. I'm actually waking up feeling like I got rest. The problem is that last night our little Keira had a nightmare so I ended up cuddling her for a while and fell asleep with her for about 1 1/2 hours. I did sleep the rest of the night in my "tower" of pillows, but having lay down for that period of time was enough to cause problems for me this morning. All morning long, if I had to reach for something or even slightly bend down, I kept falling over. It was so annoying. Just trying to dry my hands in the bathroom was enough to send me toppling headfirst into the wall...or almost, I did catch myself before it got to that. Then this afternoon it was just a case of a lot of pressure on my head and headaches again. I really don't understand what it is about laying down that causes problems for me, but hopefully my dear Dr. Chen can shed some light on that next Monday.
So I also have to mention my dear friend Julie. She is flying in from the UK tomorrow and has offered to come up to Brighton on Sunday afternoon so that she will watch our kiddies so that Jeff and I can head to the Doctor in Toronto on Monday. I really really hope she knows what she's getting herself into, but I totally can not thank her enough! It is awesome!
So I also have to mention my dear friend Julie. She is flying in from the UK tomorrow and has offered to come up to Brighton on Sunday afternoon so that she will watch our kiddies so that Jeff and I can head to the Doctor in Toronto on Monday. I really really hope she knows what she's getting herself into, but I totally can not thank her enough! It is awesome!
Tuesday, December 1, 2009
Good News
Just a short post as Jeff & I just arrived in Calgary and I'm completely wiped. This afternoon I heard back from Dr. Niaberg's office and I have an appointment with Dr. Chen (neurosurgeon at Sunnybrook) for Monday Dec 21st. I am so happy as I was not expecting anything until the end of January. Only 3 weeks away is easy to live with. Now I just need to get a copy of my MRI on CD from Northumberland Hill Hosp (Cobourg) and we're good to go. Crazy thing, it actually made me a little nervous as it means that my eventual surgery is getting closer as well. Thankfully that was only momentary and now I'm very jazzed to get things going and start to feel better again.
Subscribe to:
Posts (Atom)
