Stitches out tomorrow!

I get my stitches out tomorrow! I'm nervous bwcause I think it will hurt lol but I'm thinking that at the same time it might give me some relief with the pain in my head an of course I can't beleive my stitches are coming out already! I got a great nights sleep lastnight, it was the first night with the new incline pillow and I think that made a difference. Just middling through 1 day at a time here and dealing as best I can.

~Tara

and im off

okay so im trying to write this post all by mselr so please forgive the many mistakes i am going to make!

using the computer was a suggested part of ewhab for my brain. Im having my good moments and my bad, my painful momnts and not so painful ones. yesterday i went to the hospital by ambulance because it was hurting yo brethe. they did a bunch of tests for blood blots, hert attack, pnemonia, etc and they all came back negative. TodY IVE DONE THERAPY BUT HAVE MORE TO DO. THE HARD PART IA PUSHING YOURSELF TO DO IT WHEN ALL YOU WANT TO DO IS REST. FOR NOW IM HEADING OFF, YOU ALL TAKE IT EASY K? I GET MY STITCHES OUT MONDAY SO HOPEFULLY THAT WILL MAKE ME FEEL A BIT BETTER TOO.

Post-Op Scary Photo!

Just in time for Halloween! (Don't show this to small children or impressionable people prone to nightmares)

Tuesday, Oct 26 Update for Tara

Hello everyone,

This is Tara, dictating to my hubby, as I'm having many challenges at the moment. As you may have read, when I woke up in recovery, I found out Horatio was not a cyst, but in fact a solid mass. As you can imagine, that's been hard to deal with.
Further to that, aside from my right eye being swollen, my vision is compromised on the right side, due to the mass/extraction/we're not really sure. We'll have to meet with the ophthalmologist to see what's wrong and what can be done.
I was released from hospital the afternoon of Monday, sent home in a lot of pain and frustration to recover here. Frustrated that I don't know how many times people have said "the Cancer Centre will call you." The pathology is back on Thursday, and the surgeon will call us to make an appointment to come in and review those results with him, and then we'll know what the next course of action is at that time.
For now, my course of action is to rest but keep moving, try to rehabilitate the right side of my brain, as it can tolerate, and muddle through. I'm having my moments of a lot of pain, but I think it's from trying to adjust from a stable hospital bed to a flimsy home bed. I'm looking into purchasing or renting a medical bed from a specialty store. If anyone knows where I can get one that has rails cheaply, please let me know. I need the rails, because, since being on this medication I've been having hallucinations; I tried to escape my room in a panic (lol), and I would feel safer having rails to keep me in check.
I'm on Percocets for pain right now, which seem to have their moments of working or not, but I think that's due to the pressure being put on my head because I don't have the proper support from a bed.
I'm taking each minute as it comes and trying to muddle through. I appreciate all the support everyone has given. When I can get my hubby to take a picture, you'll
see the unveiling of the post-op Tara. "Lol, I look like the Chide of Brucky!" -- Direct quote! (Means Bride of Chucky - she made me explain)
For now, I'm trying to rest, get through the pain and hallucinations. But at least I was visited tonight by two dancing mice and a Transformer who pulled down his pants. Whatcha gonna do?
Because of my vision issue at the moment, I won't be online at all, but I will either dictate a blog post to my hubby, or have him post something for me on his own every once in a while, to keep you informed of what's going on. Or, hey, you could always call or visit me, that would be nice!

-This is Feral (the aforementioned hubby). Just as a point of order, all blatant teasing inserted is probably readily visible, and is meant with love. Thank you all on my behalf for your continued support during this difficult time.

So I stumped my NeuroSurgeon!

I had an appointment with my NeuroSurgeon this morning and have successfully stumped him! I'm not sure if that's a good thing however considering we are dealing with a tumor lol One of the first things he said to me was, "to be honest with you we still don't know exactly what we are dealing with." He went on to say that my case is rare and quite unique. They beleive it's cystic in nature because there are no indicators that it's a solid mass and he went over the different options for surgery that he has been toying with. He thinks what he will do though is to cut a 3" x 3" piece of my skull out on my right temple and go in there and once they go in they will simply burst the cyst and try to remove as much of the cyst wall as possible as well as catch fluid from it. They will then put me back together and he will send any of the fluid that they can collect and any of the cyst wall lining for pathology which will help to determine whether it is malignant or benign.


Tomorrow I have to go back to the Hospital for some more Tests, a CT Scan, get some dots put on my head that I have to wear until surgery so he knows where to cut and then I have to do some paperwork and go straight into my pre-op. And of course Thursday is my surgery day. Surgery is scheduled for 8am but I have to be at the hospital for 6am that day. I asked my Surgeon about my Hospital stay and he said that I will go to a special observation floor and that I could be out of the hospital on the weekend. So that's all folks!

~Tara

And now it happens so fast

Now that the wait is almost over, everything is happening so fast! Tomorrow (Tuesday) I will be meeting with my NeuroSurgeon to go over the details about the surgery, he suggested the appointment so that I can have my many questions addressed. Hey, if someones going to be cracking into your head you are going to have a lot of questions! And the next day (Wednesday) I have to be at the Hospital for noon for a CT Scan, then it's onto the Surgeons office to sign my life away, I mean paperwork lol and straight from there I go to my Pre-Op to be poked and prodded. And then of course the following day is THE BIG DAY! Thursday! It's my surgery day! Really you'd think by all of these exclamation points that I'm excited to have people poking around my brain and I'm not haha I'm just hoping that it will be the start of a new chapter, that it will stop the seizures, that once whatever it is gets biopsied that there is good news attached to it. Really I just want it done and over with and to start to move on with my life. I feel like my life has been on hold for the past 2 or so months with the appointments, the waiting, etc. It's sucked big time.

Oh and when I spoke to the Surgeons office today I was told that I'm the first in the OR that day and thus if all goes well I should be home by Sunday or Monday. That's good right?! Only 3 days in the hospital would be nice. My surgery is 8am on Thursday and I have to be at the Hospital no later than 6:30 in the morning to be admitted which means we are on the road at 4:30am. Argh lol I guess I won't be going to bed the night before, there really is no point!

Anyways, that's all for now folks. Not a lot of waiting to be had at this point and I'm sure the next 3 days will just fly by. Oh yeah, did I mention I'm nervous? I'm totally requesting drugs at the hospital LOL

Damn you Horatio!

Ya know there are a few things that I had wanted to do within the last week and upcoming week that I never made plans to do. In July I was sitting around with my family making plans to attend Oktoberfest in Kitchener this year but as we were sitting around looking at area hotels and tickets to events I pipe up and say, "ya know that's such a while away anything can happen let's just wait until later and see." And than there was Roch Voisine playing at Brock University, a mere 10 minutes from my house and oh how I love me some Roch! But yet again I didn't buy those tickets, and than there is The Dalai Lama. When I heard that the Dalai Lama would be making his way to Toronto and speaking there my Hubby and I wanted to go and see him, but again I hummed and hawed about it and never got tickets to the event. Well it seems that my "Spidey Sense" was in full gear at thhose times because Oktoberfest just wrapped up yesterday, Roch Voisines Concert is this Thursday and the Dalai Lama is in Toronto on Friday. Yep, my surgery is smack dab in the middle of it all, well almost. lol I guess you just "know" things and have to trust your innerself sometimes such as I did when I was literally turned away from the clinic. *sighs*

Well, my surgery is in 5 days now and the nerves are finally starting to rattle a bit. I had 2 Seizures yesterday after being almost 10 days seizure free *grrrr* I'm more scatterbrained than one can imagine and my muscles are tense in my neck and shoulders. Blah. I think it's just the nerves because the "big day" is coming up. Oh that and Horatio knows that his days are numbered so he's trying to do what he can while he's still here. For now I'm taking my pills and vitamins religiously like a good girl and trying to stay healthy, well as healthy as I can with a tumor on my brain:) So you guys take it easy ok? And I'll try to do the same.

~Tara

7 Days!

Well I'm 7 days away from Surgery and I've actually been 8 days Seizure Free! Yay! I'm battling what I think is just a viral infection at the moment so I'll be sucking back hot tea, chicken noodle soup and some vitamin C caplets. I can't be sick or else they will push my surgery date back and I don't want that! I'm also positive that it's just a viral infection and they don't give antibiotics for that so it's good ole fashioned home remedies for the next week!

**Edit** I actually ended up going to the clinic and the Dr gave me antibiotics. He said that he beleives it's just a viral infection but since I've been battling it a few days and since I have major surgery coming up that he'll put me on some antibiotics.

10 days!

So it's 10 days until my Surgery date. I'm a whole bunch of emotions balled up into one at the moment lol I'm excited because I want this to be done with but I'd be lieing if I didn't say that I was at the very least a bit nervous. I mean I'm facing major surgery and I think anyone would be, but I also think it's because I don't know exactly what is going to take place and won't until the 19th. I'm trying not to mull over it and for the most part I'm not, just really anxious to get it done and move forward.

~Tara

Whole bunch of stuff

First my Husband is sick with sneezing and coughing so he went to the Drs on Thursday just to make sure it's "just a cold" and it is. The Dr suggested that since I have major surgery in just a few weeks and obviously my immune system is down that my Hubby sleep in a seperate bed and when he is around me to wear a mask. And don't worry we've picked up some Lysol Disinfectant spray to spray in the rooms as well.

Secondly, since these "episodes" have started I have kept a very detailed log on when the seizures take place, what I'm doing, new symptoms, etc. I was reviewing that log the past few days and *knock on wood* I'm going on a few days seizure free but while looking over the log I noticed that over those few days I was barely on the computer. Is it the medicine kicking in finally? Is it that the computer screen is a trigger? I don't know, but I won't be online much anymore just to be safe and cover all basis.

And third, some of you may know who Anwar Knight is from CTV News Weather. As a news and weather junkie I've followed him from The Weather Network to CTV News, or rather you could say he's followed me since I watched those programs before he was there anyways:) He was diagnosed earlier this year with Non-Hodgkins Lymphoma and has been battling it since very publicly he even has an ongoing blog chronicling his journey. I contacted him to wish him the best and he emailed me back with some great advice. A quote from his email that really hit me because God knows it's true,

"The one thing I have learned is not to jump to conclusions and limit your web surfing. Until you know exactly what your dealing with, there is no point in escalating the anxiety. I regret googling so much....it made for some terrible days. Leave the bulk of the facts to your doctors."

It's true and I found myself googling everything and now I will stop. As I said above I will not be on the computer much anyways, I think I will limit myself to a few minutes every few days. He wished me well and I wish him well in his journey, life is a long journey and you just have to roll with the punches and endure it's ups and downs. So take care everyone!

~Tara

Kind of Confused.

I'm kind of confused as to why I'm having more Seizures since being on the Seizure medication than when I wasn't. Now it's been pointed out to me that it's possible I'm just having more because well I'm just having more and if I wasn't on the medication I'd have well more lol That's a possibility, I just find it odd. I've had 10 seizures since Friday when I started the medication and prior to friday it was 1 whole month that I had 10 seizures in, so you can see my concern. And since my Surgeon is away for a week and my Family Dr is away for 2 weeks I figure I'll just wait it out while taking the medication. Of course there probably is a Surgeon on call that the secretary can page or something, I dunno. What should I do???

You all want me bald eh?!

I see that according to my poll 80% of you think I should buzz my head:) haha well see my Surgery date is Oct 21st and I won't know until Oct 19th what the Dr is doing. If he plans to do a crainiectomy (where they remove a piece of your skull) I will have my whole head buzzed. However if they are just drilling into my skull like a little burrow hole I won't be doing that! It just all depends on what I hear will happen on the 19th! And as long as they don't keep keep me on the 19th and I come home for 1 day I will let you know here on the 20th what I plan to do!

On a crappier note (I know what's crappier than the prospect of getting your skull cracked open?!) My Seizures are becoming more frequent and I hate it. I've had 9 of them in the last 48hrs and it sucks. Oh and my Family Dr is away for 2 weeks and my NeuroSurgeon is away for 1 week so I can't even consult either of them in regards to the Seizures. I guess I could call my NeuroSurgeons office and leave a message with his Secretary and she could track him down but geez! They put me on new meds, tell me they want to crack my head open and he and my Family Dr leave lol You just gotta wonder! ;)

Just a Cyst?!

Alright so I spoke with the NeuroSurgeon this morning and this is what he said!! He said that after consulting with a Bunch of his Colleagues they believe that the mass is a Cyst! They said that there are no Solid Parts and no enhancing on the MRI and they are quite sure that it is just fluid! On October 19th my Husband and I will be heading to Hamilton to meet with the Surgeon to go over what the surgery entails and to have any of our questions answered, The Surgeon is so confident in what they think it is that they have booked me for Surgery for Oct 21! I'm just SO glad to finally have a date and more of an answer as to what Horatio really is! That's all for now but I'm okay with that!

It's just nice to have a definite answer for the FIRST time throughout this whole thing, that definate being a surgery date. No more, "just wait by the phone and we'll call you" crap actually takes a lot of stress off of me. Soon this Nightmare will be over. Thankfully!

~Tara

Having a rough one :(

I'm having a rough day/night. I've had 4 Seizures within the last 7 hrs, the last to which I awoke from sleep to have. Argh. Now I'm lucky *knock on wood* that these aren't physically terrible but they are frightening none the less. I hope my Surgeon calls in the morning so that I can address this with him. I don't think I'm going to try to go back to sleep tonight as the last one I woke up to have and the one before was when I laid down to go to sleep, Blah. Eff Horatio!

~Tara


Just had my 4th in 8 hrs, I'm hating this.

New Meds are kicking my butt!

Friday was the first day of my new Medication that the NeuroSurgeon put me on to help control the Seizures I've been having and they are severely kicking my butt. I was told they will make me drowsy and dizzy but boy is that an understatement! Each time I took them they knocked me out within a half an hour and I mean stone cold knocked out, good thing I only take the pills twice daily! I'm irritated though because my Surgeons office called me 3 times today on both the home phone and my cell phone and I didn't hear either phone ring that's how out of it I was. According to the voicemail left apparently my Surgeon wanted to talk to me before he went away for a week so that I'm not left stewing until he returns. His secretary said that it isn't Terribly Urgent but that he'll try to call me Monday morning before he leaves. I'm hoping this means good news like, "oh it is cystic and we just don't want you worrying" kind of thing, that would be nice! But now I have to wait until Monday morning. Grr, Grr I say lol

Everyone, meet Horatio

This is what happens when I get bored lol Seriously:) Now obviously this isn't the size of a human brain but the photo of Horatio is actually placed on the diagram exactly where it would be on my brain and it shows the approximate real estate that he is occupying.