Just waiting.

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.

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!

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.

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!

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.

A little frustrating!

So last night our wonderful neighbour came over to babysit. I must tell you about this woman as she has been such a God-send. She is an amazing lady. She's in her early 70's, but jogs 3x's/week and has such energy I wish I could keep up. Quite a while ago she had offered to babysit but I didn't want to impose. Then this summer her daughter was down from Toronto and had come over to talk to me as I was loading up our girls into the van. She begged me to take her Mom up on her offer. She said her Mom liked to be busy and would really love to help. Since then I figured, as long as she tells me when it doesn't work for her, I'd gladly have some extra help. It has been so awesome, especially when I wasn't feeling good. There were times when I had such a bad migraine that I couldn't stop throwing up, I just called Barbara, sent the oldest 2 girls over there, put the baby to bed and was able to go back to bed to sleep off the headache. The best part is that my girls totally LOVE going to her house. The basement has all kinds of music instruments, crafts, and dress up cloths that it really lets little girls imaginations go wild.

So my day started off yesterday with insomnia at 3:00am and I only got 3/4 hr more sleep after that before the girlies thought it was time to get up. Good thing was that the oldest 2 had preschool, so after dropping them off, I popped Danica back in her crib for her morning nap and headed back to bed myself. Just to round the day off as a total write-off, when I picked the girls up, fed them and sent THEM off for nap time, I headed back to bed again. So I figured that I'd be feeling great for the evening out with my husband. Barbara came over after dinner and I was feeling good. She told us to go out for a drink after shopping and enjoy ourselves. She said that she'd just be home watching TV (until about 2:00 am)so whether she did it at our house or her's, it didn't matter (not sure I believe that as our TV upstairs is only a 13" and she had a big flat screen at home).

We got the mall and I was still feeling pretty good. It wasn't until about 20 minutes into our shopping trip that my head started swimming and I started to feel super tired again (SO annoying when I had 2 naps that day). Then Jeff ended up running into a guy he used to fly with. I had never met them before and they seemed super nice. Problem is, I have such a hard time keeping a train of thought sometimes, that having a prolonged conversation with someone takes quite a bit of work. It's SUPER annoying, especially for me! Thankfully my friends and family understand what is going on, but when it's someone I've never met before, well lets just say it's very embarassing. I'm sure those people said "Nice to see Jeff Jackson again, but man what an airhead his wife is". I had tried to elude to the fact that I had something going on with my head so had a hard time concentration, but I think I might have made the situation worse. Really makes me cringe, but as I said to Jeff on the way home. Hopefully I don't have to see those people again and in 1 year from now I'll hopefully be all "fixed".

One thing I forgot to mention

One thing I forgot. The doctor thought it a bit incrediable that myself and 2 of my sisters and 1 niece all have head tumours. He didn't think there was a genetic link, but he definitely put it on my paperwork to send to Sunnybrook.

The specialist appointment.

Jeff and I had been somewhat impatiently waiting for today. Unfortunately, I went to bed last night with a slight fever and feeling very fluish. I doubled up my vitamin D hoping that I would not be feeling too unwell to go today. Thankfully, I woke up not exactly feeling great, but with some Tylenol in me, I was OK. We dropped the oldest 2 off at the babysitter and headed out. When we got to Scarborough General it was so nice to see that we were the only ones in the waiting room and didn't have to wait more then about 10 minutes. They first gave me another hearing test and then we went in to see Dr. Niaberg.

He was a very nice doctor and already knew a lot of my condition from his discussion with our neighbour. He did run through my symptoms with me and then did a couple test. He had wanted to determine how much of my face was numb so took a sharp metal object and touched my face to see what I felt was sharp and what felt dull. Pretty much all my left side of my face and inside my mouth felt dull. Then the weird thing was he rolled up a Kleenex to a point and touched it to my right eye, which really hurt. When he did it to my left eye, he was able to tap it to my eye a few times. I could feel it, but it wasn't uncomfortable. He also made me follow his fingers and then as fast as I could touch my finger from my nose to his finger (which he moved about). The last test I had to do was tap my finger tips together as fast as I could. He told us that he sees about 1/2 dozen of these tumours/year and almost all of them have substantial hearing lose. He said that my hearing test, that they had just done, came back quite good. He is hopeful that this increases my chances of keeping a degree of hearing, which is so great. He said that it seems that this tumour is effecting more my balance part of my nerve then the hearing.

So next step is still that he will refer me on to the 2 guys at Sunnybrook. He said that this type of surgery is quite specialized and Sunnybrook is the place to be. He said it takes quite long to get in to either Dr. Chen or Dr. Nedzelski, but he would do what he could to speed up the process. When we got home I had to call his receptionist with some info about my family doctor and she said she was sending the information this afternoon but not to expect to hear more until next week. Dr. Niaberg also mentioned that since my last MRI was done not using the contrast "stuff" (not sure what it's called...and definitely not it's medical term) I would have to have another, but he would wait for Sunnybrook to do this for me. The reason they didn't use the contrast on my first test was because I was still breastfeeding. I have since weened Danica (such mixed feelings about that) so there is no problem moving ahead. Even Dr. Niaberg was happy to hear I had weened her. So, we now look forward to the next chapter.

to recap

So to recap what has been happening with me in the last few months. Our little Danica was born on March 5th and for my last trimester I had been feeling pretty lousy. I had been used to having migraines for my 1st trimesters, but this was the 1st time I had them in my last trimester and the intensity and frequency was awful. I was getting a migraine up to 3 times a week. I was also getting them while I was sleeping, which was a real first. It's a terrible feeling to wake up from the feeling that your head is going to explode. After Danica was born I got a bit of a break for a few months and then went right back into the migraines again. Around the end July, on top of the migraines, I started to have a very heavy feeling in my head. That's the point where I figured it was time to get things checked out. Unfortunately, my family doctors at the time was absolutely terrible. He really should retire as he couldn't be bothered to do his job anymore. The response I got from him was to wait another month and if I was still getting migraines he'd put me on medication. That's the point I figured I needed a new doctor. I didn't really see any huge urgency at the time so I just scheduled a "meet and greet" for myself and the girls and the soonest they could get me in for that was the beginning of October (this was August when I made the appointment). Over the coarse of this time my symptoms started to get worse. First I started to get a "whooshing" sound in my ears and couldn't turn my head to the far right or left. Then I noticed that I was having a hard time focusing to read my girls bedtime stories. The last symptom that started to worry me a little was the fact that my entire left side of my face including my tongue and lips began to get numb and I lost the sense of taste on my left side of my mouth as well.

My appointment with the doctor turned out that they didn't schedule enough time for the doctor to see me and all 3 of our girls so I had to make an appointment for the week later...grrr. When I did get my appointment the doctor was great. She did a lot of tests and took my blood pressure and sent me for a battery of blood tests as well as and ECG. I went home convinced that the blood tests would show some issues with my hormones and figured I likely had a thyroid issue and the fact I was breastfeeding made it worst. I was wrong as all the tests came back negative. That week after my appointment I woke up very early 1 morning feeling with such and intense pain in my head (not like a migraine, but equally painful) and such bad double vision that I was actually worried that I would need to call an ambulance if it got any worse. The added stress was that Jeff was out of town and had been for the past 2 weeks and had another 6 weeks to go. That morning when the girls got up, I actually reviewed with Sidney that she knew how to call 911 just in case I did end up blacking out. Thankfully she did and I reviewed that with her a couple more times in the next week as I had another episode like the 1st. That morning I called my doctor to come in that day. I told her that I was getting nervous to be alone since I was worried about blacking out. She ordered a CT scan. I got my scan 2 weeks later and when I showed up at the hospital (which I love Cobourg hospital) the doctor doing my scan said that since my family doctor wanted to have my pituitary gland checked, he wanted to schedule me for an MRI as this gland is hard to see with a CT scan. They still did the CT scan, but I had to come back the next day for my MRI (I didn't know at the time but I was very lucky to have an MRI so quickly).

The weekend after my scans I went out for my friend Lisa's birthday to a nice restaurant in Picton. On the way home after dinner when I was telling Lisa and Chris how I had been feeling Chris had mentioned that he got the whooshing in his ears when he was dehydrated. I figured especially since I was breastfeeding still this could be very possibly a factor. That next week I tried to drink as much as I could and I think it did make me feel a little better. I thought it would take some time to build up my fluid amount so give it a couple more weeks and I thought I might have this things solved. Unfortunately it was not to be so easy.

That following Friday I got a call from my doctor's office informing me that although my CT scan showed nothing, my MRI showed a 2 cm tumour in my inner ear. The Doctor told me it was calls a vestibular Schwannoma. I had to struggle to keep the doc on the phone for even 5 minutes to try get an information out of him. He basically said it would not spread to the rest of my body and that I would need to come into see my family doctor the following Monday. I was a little gobsmacked and couldn't believe what I had just heard. I was thankful that all 3 of our girls were sleeping so I could head downstairs to do some quick research on the computer as to what this thing was. I quickly discovered that if treated properly it was not life threatening...good, but it was likely going to take my hearing from my left ear...not so good but not the end of the world. My next step was to send an e-mail to Jeff in Cyprus. Being conscience that my husband has a tendency to worry about my health (and understandable why) I decided to send him links to info sites about this tumour in my head in the hope it might put his mind a little at ease. It didn't take more then 20 minutes and I got a call from him. He hadn't looked at the links and was a little freaking out. We talked about what was going on and I asked him if there was anyway he could come home. I so didn't want to have to deal with this on my own. I knew it was not likely to take my life, but this was not a little thing and I didn't want to have to meet with doctors and make those kind of decisions on my own. Now also understanding why I felt so bad, it made me also want to have another adult in my house in case I did start feeling really lousy again. The good news for this story is that the military had him home just over 24 hours later...yippee. The bad news was that less then 2 hours after I asked Jeff if he could come home, I got a call from the base padre. Now in the 9 times that Jeff had deployed and the 5 months he spent down in Oklahoma, not once did I receive so much as a call from the military even though I was pregnant 2x's and home with a newborn (6 weeks old) another time. This padre wasn't calling to see if I was OK, or if I needed help. He was just calling to get the name and phone number of my family doctor to make sure I was telling the truth. I guess the upside to this was that when my sister Janet called me that evening to see how I was doing, I was so fumed at the padre that it took my mind of my new diagnosis. Guess there is a silver lining for everything.

I have to say I was so happy to have Jeff home. He got home on the Monday and was able to come with me to my family doctor. We didn't get much new news there, but she did say she wanted to refer me to an ENT (Ear Nose and Throat) specialist. She didn't have any names so we figured we'd do our own research and get back to her. That afternoon (which was also his birthday) Jeff walked over to an neighbour of ours that is a retired anaesthesiologist from Toronto to see if he might have some information or contacts. He told Jeff he was make a few calls and get back to us. Later that night after I had just got the girls down to bed the door bell rang. Here was our neighbour with the info already. He stayed told us of a ENT friend of his that didn't do this type of surgery, but he would do the initial assessment and then refer me onto 2 other doctors at Sunnybrook hospital in TO that do do this. He said these 2 guys are the top guys for this type of thing. Funny thing, I had actually just found their names on the Internet about an hour before. Since then I have also heard from 3 different sources that this are definitely the guys to see. So now it's just a waiting game until my appointment on the 25th of November with the ENT. I have to say that Jeff and I are really quite grateful that since I went to see my new family doctor we really haven't had to wait more then 2 weeks for appointments. I am just so happy I decided to dump the loser doctor here in Brighton. If I hadn't I still wouldn't know what was wrong with me. I'm also so happy that the doctor in Cobourg fit me into an MRI the day after my CT scan. We have been very blessed!

The week after my diagnosis has been a little weird in so far as getting used to the idea that I have this thing growing in my head. It was interesting to me that once I stopped trying to ignore all my symptoms (as I kept thinking it was just hormones and they'd go away) and actually started to pay attention to how I was feeling, it was a little amazing how really quite lousy I was feeling. In addition to the symptoms I already mentioned I realized that I basically go through the day nauseous and that the times I was thinking I was just being clumsy it's really that my balance it quite messed up. The other interesting this is that early in the summer Jeff had said that I should get my hearing checked, which I did and it turned out I had hearing loss in my left ear. Now we know why.