Goodbye 2010!!!!

To say that this past year has been a rollarcoaster ride is quite frankly an understatement. I can not wait to get this year behind me and move into a brand new year, with a better bill of health, a new outlook and attitude and move forward. The last 5 months in particular have been my own personal hell. In 5 short months I went from having very odd sensory things happening to me, to a bunch of tests being done and subsequently finding out that I had a large cancerous tumor on the right front temporal lobe of my brain that had probably been growing for more than 10 years. Talk about having your world rocked. And of course I can't forget being wheeled into the Operating Room at Hamilton General to have that nasty thing removed on October 21, 2010, that was a Thursday morning and I was home by Monday! My progess has been better than expected, and I recieved my Christmas Miracle on Dec 16 when I visited the Juravinski Cancer Centre in Hamilton to discuss my ongoing treatment only to be told that my Surgeons got the whole tumor and therefore I would be put into observation to have MRI's done as the Neurologist said, "until your grey". What a relief and a blessing all rolled into one. And I know that my continued health and wellbeing lies in my hands. While going through the battery of tests I did and during recovery I read alot about Cancer and I learned quite a bit. The 2 things that Cancer loves and feeds off of is Refined Sugar and White Flour, so as I leave 2010 behind I also leave those foods behind. I will be adopting a Whole Grain Diet, avoiding White Sugar, Aspratame and White Flour and making sure I get my moderate exercise daily. Hey, if I don't look out for myself and my health, who will?

So I hope that most of you who read this haven't been through your own Personal Hell like I have this year but even if you have I'd like to say this: Tomorrow is another day, Chin up and carry on! Leave 2010 behind you and look forward to a new day.

HAPPY NEW YEAR!!!!!!!!

~Tara

2 months ago today....

2 months ago today I had my Operation to remove my Brain Tumor, I really can't beleive it. I can't beleive that this whole journey started a mere 5 months ago, it's been a very emotional and trying 5 months. I've made a lot of progress as well which is good, for starters I don't use my cane at all and haven't for a few weeks now, and my perifrial vision that my Opthamologist said I would probably never regain, well guess what? While it isn't back fully in both eyes I've regained most in my right eye and some in my left!

And ask me about a month ago what my day consisted of and I'd have told you that I was up early in the morning to take my pills and took many naps during the day and not much else. I'd jump online to check emails but that really was about it. Not being able to bend over or carry anything over 10 lbs because of the surgery has unforutunately limited me in things I can do around the house and I had no desire to leave the house, so if I wasn't at an appointment I was probably home napping.

Well as you may know I recieved some good news last week and that definately brightened my mood and lifted my spirits. I went 2 days in a row this week with no naps at all after having been out those days and today I napped only once. But today also consisted of cleaning around the house, wrapping gifts and getting things ready for Holiday visitors. I know it may seem like nothing to someone reading this but to me it's a HUGE thing. The fact that not only am I able to do these things but have the energy and desire to do so is a huge step in the right direction. I've been using a grab stick of sorts which allows me to pick things up without bending over so it's been a great tool for me!

Physically the only real discomfort I have and have had all along is on the right side of my head, big surprise I know lol But it's tender to the touch on the top right hand side which my Surgeon said is due to the fact that they cut the nerves during operation and it takes a while for them to heal after they reattach them. That and I get a pressure from time to time right above my right ear that feels like something is trying to push my skull out, it's uncomfortable when it happens and more annoying than anything but I just take some pain pills and take a nap and hope that when I awake it's gone and it usually is. I'm also quite sensative to white, you read that right: White. I'm sensative to light but white especially. If I'm looking at the computer where the screen is mostly white or in the car and looking at the snow on the ground or reading a book or magazine that has white pages I can't do it for too long because it hurts.

Considering however what I've been through I think these are very small things that hopefully in time will get better anyways.



~Tara

Just to clear up a few questions you may have

Goodmorning all! I just wanted to write a blog post to address some questions that have been asked and seem to be floating around in peoples minds about what is going
on with me. I didn't really clarify some things in my post yesterday so I will today.


Q) What kind of tumor did you have?
A)The type of tumor that I had was called a Mixed Glioma which specifically is a Brain Tumor and has a mixture of 2 types of Cancer cells, some bad, some not and there is no way to tell which cells are dominant and which cells remained in the tissue which is why I will be doing observation to keep a close eye on them.

Q) Will you need any further treatment?
A)At this point no, nowever because I am in Observation we will be able to watch the cells and see what they are doing and should the cancer cells misbehave and start to regroup with other cells and start to form a new tumor they can catch it at hopefully the start of formation and I would at that point need further treatment. But as long as the cancer cells mind their own business & don't try to make friends, I won't need any further treatment.

Q) What about the Chemo pill?
A)I was told that I do not have the genetic markers to be able to take the chemo pill so if at any point I need further treatment I will be placed on Radiation first and then Chemotherapy. If I would have had the marker to take the pill as pure precautionary in conjunction with observation I would have been taking that now as well because it is easy on the body.

Q) And why the difference between the 2 Drs Wed & Thurs??
A)GREAT QUESTION! You can only imagine how stunned we were when the Dr at the Cancer Centre said what he did and I was quick to question him as well considering what I was told the day before. The information I recieved Wed came from the Chief of Staff at the Hospital. While he was looking at my latest MRI, he was doing so without having my initial MRI with him to compare them both and without having been the person performing my surgery. So really he was assuming how much was recovered during the operation. When I brought this up to the Dr at the Cancer Centre Thurs he simply said that he is going by Pathology and their findings. Keep in mind that Pathology not only compares MRIS they also examine the removed tumor and inspect it. So they are able to determine what was removed alot more accurately than someone looking at an MRI. Plus something did show up on the MRI, that was the Fiberous Tissues!


Q) How am I feeling?
A) I'm a mixed bag of emotions right now. I feel excited, happy and relief but's a cautious relief. It's been a very hard 4 months and my emotions have been jerked around constantly. What I do know is that I have been able to reflect on alot of things these past 4 months and what I once thought important seems to be so far from that. I appreciate the love and support and prayers of my family and friends you guys are amazing! I really doubt I would have faired as well as I have if I didn't have you all rallying around me.


In the New Year I will be meeting with Dieticians and Endocrinologists to help in the study between Diabetes and Cancer. Hey if I can help with something that's never a bad thing.
And in the New brings a new Lifestyle. I've been reading alot of books on Cancer and the connection between our Dietary habits in the Western World and how it feeds cancer cells, so the New Year brings change. When I left the Cancer Centre yesterday the Dr shook my hand and said, "Okay you're not sick, go and Enjoy your Christmas", and I plan to do exactly that! And I hope you all will as well.

Lots of Love
~Tara

I have excellent News!

I am more than excited to report the following:

I will not be doing Chemotherapy or Radiation! Why you ask? Because the Surgeon got the whole tumor! But what did the chief of staff say to me yesterday? Well he said that he didn't have my original MRI to compare this latest MRI with but he suspects that they got 50-75%. So he really didn't have an accurate number to go with, but of course I left the office feeling depressed and thinking the worse. Well when I saw the Dr today he was going over the Pathologists report with me and said that the only thing that shows up on the MRI are the fiberous tissues that the tumor left behind which is what I was seeing when I viewed the MRI!

He said that with Patients my age with my type of brain tumor (mixed glioma) they prefer to put them into Observation indefinitely. All that means is that for the 1st year I will have an MRI every 4 months,and the 2nd year every 6 months and the 3rd year on it's once every year.Basically they will continously monitor my brain and if anything showed up down the road they would deal with it at that time with radiation first and then chemotherapy , but to do chemotherapy and radiation right now I would be putting my body through unnessessary pain and long term effects. So my first MRI is April 2011. To say I am excited is COMPLETE understatement! This really is the best Christmas Gift I could have ever recieved.

MERRY CHRISTMAS!!!


~Tara

My final Surgeons appointment: Horatio lives on

Alright, so I met with my Surgeon and also the Chief of Staff today in Hamilton where we reviewed the MRI together and I was shown the mass in my brain that they couldn't remove. Yeah you read that right: That they couldn't remove :( I asked both of them how much was removed and I was told that probably between 50-75% but they of course can not be certain. As I hear them say that they were unable to remove about 25-50% of the tumor my heart sank. I knew they probably wouldn't be able to get it all but to hear that it could be as high as half of the tumor it just felt like someone sucker punched me. I was told that with the tumor and location that they had a 7cm area in which they could work with removing it without affecting too much. I was told that had they gone any deeper to try and remove anymore of the tumor that they could have possibly blinded me, left me deaf or severely affected my speech and because of my age they didn't want to do that. The Chief of Staff put me through my paces and had me do some monkey tricks as I call them to see how I'm walking, talking, seeing, etc and both him and my Surgeon seemed impressed with how well I'm doing. They figured I'd have many more issues post surgery that most people that have brain tumors removed do experience but were happy that I wasn't.

And now I cut ties with my Surgeon, and as I left his office I shook his hand and simply said, "Thank you, and on't take this the wrong way but I hope to never see you again", to which he smiled and replied "that would be great."

Now I am in the hands of my Oncologist and the people at the Juravinksi Cancer Centre in Hamilton for further Treatment. That reatment should be Chemotherapy and Radiation but what kind and what schedule I won't know until tomorrow when I meet with them again. I will let you all know tomorrow how my appointment goes, for now I'm crossing my fingers and hoping that I'll get some good news tomorrow and learn that I can take the Chemo Pill. Some good news would be nice. Yeah it really would.

~Tara

Surgeons Appointment tomorrow

So I meet with my Surgeon tomorrow for the first time since my surgery, this will be my first post-op appointment and hopefully the last time I see this man again. nothing against him, he's a great surgeon, but I'm hoping I'm done with Horatio. My appointment tomorrow however is weather permitting as it's been crazy out on the highways! I also meet with my Oncologist for the first time on Thursday and that's a big day for me, that's the day I find out about Chemo and Radiation. I'm king of nervous as well because we will be going over my latest MRI results as well and I was told previously that something showed up on the MRI we just weren't sure what it was but I guess Thursday I'll find out.

~Breathe~ That's really all I can keep telling myself and all I can do.


~Tara

It's been a rough few days

This week has been far from a good week for me that's for sure. I went to my Family Dr Monday and got my final stitch out and you wouldn't beleive how much better my head felt after having that tiny little stitch out! My Dr gave me the stitch and I have it in a tiny bag at home:) He put me on some new medication for my Diabetes and well that medication didn't agree with me. I unfortunately suffered most of the side effects which were not pleasant to say the least but once I stopped taking that medication I started feeling alot better.

I ended up cancelling my appointment with my Oncologist and NeuroSurgeon though because there was no way I was hitting the highway with how I was feeling.I was feeling somewhat better until the right side of my face started to puff up and was warm to touch! My face was really inflammed and I was in severe pain running along my jawline, teeth and around my right eye. The only relief is placing an ice pack on my cheek which helps bring the inflammation down but within minutes of removing the ice pack it gets inflammed again. Having had many sinus infections before I thought that perhaps that's what it was so I went to the Drs who said it could be a sinus infection but he suspects that it's a bacterial infection on the underside of my cheek :( My Hubby asked him if it could be related to my surgery and he said it would be hard to say. Sure an infection could have set in at any stitch, scab, opening to my head etc, you really couldn't tell.

Long story short he placed me on an antibiotic and I need to follow up with my Dr Tuesday to see how it's coming along. I hope the meds work because painkillers aren't and only an ice pack will help right now which gets pretty cold this time of year! Oh well, yet another bump in the rd to deal with.

~Tara

Some Improvements!

I haven't wrote a blog in a bit but that's mainly because I've been resting a lot and trying to get myself back into the real world all at the same time. Some good news to report however is that even though my Opthamologist said I would have perminant damange to my perifrial vision I was sitting on the couch last week and was able to see my cat that was on the top of the couch to my right using perifrial vision! So while it may be slowly improving at least it's improving! That and my Double vision is becoming less frequent and previously I wasn't able to lift my right eyebrow or lid and I am able to do it slightly! So a few improvements even though some are small and slow they are at least heading in the right direction!

I've been out shopping a few times and it seems to tire me out easily but little by little I'm trying to integrate myself back into society. My Surgeons appointments today was rescheduled for Dec since he was need in Emergency Surgery but I do have an MRI scheduled for Friday in Hamilton and then with my Family Dr on Monday and hopefully get my last stitch out because it's been hurting like hell. After that I meet with the Cancer Centre on Dec 2 to learn the results of the Genetic Marker Tests and to see what my Treatment will be and schedule for that as well and then I meet with my Surgeon on Dec 3. I have an appointment in the new year to meet with an Endocrinologist in the new year I beleive a Dietician as well. So there are a lot of appointments ahead and some more tests to be done but I'm muddling through.

~Tara

Perm Damage :(

'm back from my Opthamologist appointment and I suppose things could be worse. I knew previously that the surgery had messed up my vision in my right eye and today I was to find out to what extent it did. My Dr said that my double vision should correct itself within the next few months as should the blurryness but that I unfortunately suffered perminant damage in both eyes in regards to my Perifreial vision .He said if there would be any hope for it to correct itself at all it would be within the next few months but he doesn't beleive it will. How this effects me is that I simply would never be able to drive and things such as crossing the street are a little more dangerous but other than that my vision will be fine. It sucks drastically but I'm trying to stay positive and think that it could be a lot worse. I go back and see this Dr in March to do some more tests and see if at that point I've regained any more of my vision, for now I have a droopy right eye due to the nerves not sending my muscles any messages to work! lol But other than that I'm doing a lot better than the Drs have expected me to which is good.

~Tara

Chemo Fashion

So I've been told and have been reading about the effects of chemo and radiation and of course losing your hair is one of them. I figured if I'm going to lose my hair I'm going to look fashionable while doing so:) It's been difficult finding anything real cute, I guess most chemo patients just want to cover their bald heads and don't care about much else but dammit I want to make a fashion statement! So I was thinking it sucks that my chemo and radiation is going to start in the dead of winter right before christmas but that means I can be all chrismasy! lol So I looked online and found a chemo hat that is hand made 100% cottom in fabric that is the Peanuts Christmas lol It is so cute and I will wear it to my radiation appointments:)I saw the cutest chemo hat at the Cancer Centre that I might pick up when I'm there next, and my Mom actually bought me my first chemo hat to. It's white with a satin lining inside and really comfy.I think I'll wear the hat today though, afterall it is kinda cool outside and it will hide my scars since my hair hasn't grown back in yet. Chemo Fashion, such a sad reality that such a thing even needs to exist.

~Tara

Stitches & Staples are out

I went to my Drs yesterday to get my staples & stitches out and all but 1 stubborn stitch is gone! I can't tell you how much better my head feels, but that one stitch is causing a significant amount of pain too! It honestly felt like barbed wire was being pulled from my head when the Dr was pulling it out, not the best feeling I tell ya. But the good thing is that this evening I will be able to take a warm damp cloth to my head to losen the dried blood and iodine and should that go fine without any issues I can FINALLY wash my hair!!! Who knew something as simple as washing your hair could excite you lol I am suppose to get some bloodwork today but I'm not sure I'll get out in time to do that and I might end up doing it tomorrow, but Thursday I meet with my Opthamologist to see about the vision in my right eye and see what we can do to restore that. One day at a time, that's how I'm taking things.

~Tara

This has all been a whirlwind

I was visiting with my girlfriend Cody tonight when it hit me: So much has happened in such a small amount of time. It was Aug 18 when I had my first "episode" that I later found out was a seizure and it was Aug 23 that I first went to my Dr because I was concerned about these "episodes". It has been a mere 10 weeks since I had my first seizure, gone through a battery of tests, had major surgery to remove a tumor from my brain and learn that I have Cancer. That's right, it's been a mere 10 weeks that all of this has happened in, and I'm not sure if that's a good thing or not. Yes it's good the Drs were on the ball and found out what was wrong and acted upon it and it probably is good that I haven't been left to stew in my juices and worry but at the same time I haven't been able to comprehend everything that's happened.
Everything has just happened so fast. I'm only 30 years old,been only married 3 years this December and was at a point of trying to sort out my life and BAM! I'm hit with a new reality: I have Cancer. This is no longer "someone elses" disease, it's mine and like it or not I have now become a part of a statistic. Can a person truly understand the full reality of that? I don't think you can, but what I do know however is that I will fight this with everything in me and then some. I come from a family of fighters and anyone that knows me knows that I can rumble with the best of them. Hopefully my spunk and fight will serve me well with this new development in my life. Yes I have Cancer, but Cancer will NOT have me. And I won't let it define me.

~Tara

The next step

I received alot of information this morning and I'll be honest in saying I'm still trying to comprehend it all. Here is the nitty gritty: Horatio was a low grade malignant tumor and on a grade scale of 1-4 he was a 2. A grade 1 tumor is benign and therefore a grade 2 tumor has equal non cancerous
and cancerous cells and it isn't a fast growing tumor. Actually when asked how long my tumor had been growing the Dr said at it's size and rate of growth it had been growing for at least 10 or more years.
Onto what to do about it: I had bloodwork done today to determine whether or not I have a specific chromosone in my body that would allow me to take a chemo pill. This pill is specific for brain tumors and I actually have a neighbor that is on a chemo pill for her luekemia and it's suppose to be alot less harsh on
your body than traditional chemotherapy. Once they review my MRI that I will be getting done on Nov 26 they will at that time determine what radiation will do as well. The bottom line is that because of my age and general health they want to attack this aggressively and although at the end of the day it is my choice what to do they want to go at it full force with radiation treatment and chemotherapy. Now, again I'm REALLY hoping that I have the right chromosones for the pill treatment because it will be a lot less harsh on my body. That's it for now really,
I just have a lot of appointments coming up in the next 4 weeks and meeting with many spcialists as well. Keep smilin, that's what I'm telling myself.

~Tara

Appointment Tomorrow

So I recieved a call today from my Surgeons office letting me know that I have an appointment tomorrow morning with the Juravinski Cancer Centre in Hamilton at 9am. What exactly I will learn tomorrow I have no clue but I would assume this is where I would get more information on my specific tumor, treatments available, etc. I need to stop by my Surgeons office to pick up my original MRI from him and then go by the Cancer Centre for that appointment. At least by tomorrow afternoon I should have a better understanding of what's going on and what my next course of action is.

~Tara

And so you have Cancer...

I spoke to my Surgeon today and he said that the Pathology results came back and that as he suspected my Brain Tumor was a low grade tumor, when I asked whether that meant it was malginant or benign he simply said that doesn't matter to him. lol nice eh? He didn't mean it as he said it I'm sure haha but still, I did comment to my Mom later that ya know it would be bad phone manners to simply call and say "so you have cancer, have a great day" LOL From what I know of Malignant/Benign tumors and such and the very little I researched online (hey I don't need to go crazy!!) a low grade tumor simply means it has more normal than abnormal cancer cells, it's more predictable and usually doesn't spread. I do see my Family Dr on Monday and he will have the results as well so any more specific questions I have right now I will ask him.

I have an appointment on Nov 11 with an Otpthamologist to see about my vision issues in my right eye and I also have to wait for a phone call from the Cancer Centre to meet with them. That's all for now folks!

1 more week

I went to my family Drs today to get my stitches and staples removed but he said that it looked like there was fresh liquid around the stitches so he wanted to leave them another week. In the big sheme of things it makes no difference really but I was hoping they'd be out today. I guess it's better though that he be more cautious than just jump into taking them out. I'm also waiting on the Pahtology results as well. I called my Surgeon today and he wasn't available and my Family Dr said he hadn't recieved any Pathology results so it's possible they just aren't in right now. Again we wait lol it seems to be the thing I do anymore, just wait. Other than that however I do seem to be getting around better. With being in the house I can walk some straight lines without the assistance of a cane, that's of course because it's familiar territory, but baby steps, one day at a time.

~Tara

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.

And The Surgeon Says???

Guess what? It's a boy! His name is Horatio and although we don't have a weight yet he measures in at an astonishing 55.9mm x 43.4mm. He's big! He's playing shy and he's a stubborn one just like his Mom and he isn't ready to come out yet!

Anyways, I met with my Surgeon today and obviously I am at home at the moment. We reviewed the MRI together and I have to say that I was and still am in shock of the size of this thing. It literally takes up what looks like at least a quarter of my brain. My Surgeon said he doesn't know what it is, so yes I am an enigma. Imagine my sheer frustration when I heard the words uttered from his mouth, "I don't know what it is." And he knew it, I kind of huffed and said, "I'm sorry but you can imagine my frustration when that's all we've been hearing." He said that he wanted to consult some other Surgeons to get their opinions on the MRI before he proceeds because he isn't a "rush to surgery" kind of Dr. Fair enough, and quite frankly I appreciate that! So the Good, The Bad and the Ugly Truth is below.


The Good: He said that since the MRI didn't pick up any of the contrast dye (which highlights cancer cells) and because of the size of the lesion if it were cancerous I'd probably be a lot worse off physically than I am and producing worse symptoms. But of course they can't say definately that it isn't either. Now he referrenced it as a lesion because they just aren't sure of what it is. He said it could by Cystic which just means it's a cyst, but again they don't know. He said looking at the MRI one could easily assume it's cystic by how it is showing up highlighted totally white on the MRI as though it's all fluid, however having done as many surgeries as he has he said he's learned that oftentimes when you think it's cystic and you get in there you are wrong.

The Bad: Horatio (as we've so unlovingly named him) is freaking HUGE. We just had to name him so I had something to curse out when I needed to:) My God I was and still am in shock after seeing it on the MRI. Further to that, the lesion is deeper than they first thought which is another reason they are not going to rush into surgery. He explained that obviously the deeper it is in the brain the harder it is to get at everything that needs to be removed and the more issues you can run into in the end in regards to problems during and after surgery. Horatio really is a big ugly nasty univited house guest that I want evicted.

The Ugly Truth: The Surgeon placed me on Seizure Medication for the seizures I've been having and whatever this freaking thing is it has to come out. My Surgeon is away next week but said his office will call me the following Monday with an appointment for a Biopsy, he said depending on what he finds after reviewing the images further with his colleagues that they may operate at that time. He also said that he would need to do the Biopsy with me totally knocked out because of where the lesion is located. To give you an idea of how large this sucker is, read below.

The average Adult Brain measures 140mm in width by 167mm in length. And Horatio measures 43.4mm in width by 55.9mm in length, he's pretty much occupying a good chunk of real estate in my Right Temporal Lobe. Nasty squatter!

I'm very frustrated that I still have no difinitive answers. I feel like I'm in a very bad nightmare and can't wake up from it, and as you can imagine this is all emotionally taxing. I also feel like a Medical Enigma that no one can figure out! Anyways, we are pretty much exactly where we've been all along. Very little info, no difinitive answers and a hell of a lot more waiting. I will update this blog as I get more answers, you know other than, "We don't know what it is!"

And we finally have a date! Sort of LOL

Here are the details: Tomorrow (Thursday) at 12 noon I have a consultation with my NeuroSurgeon at the Hamilton General. There is a possibility that I could be admitted at that time but after reviewing my chart the woman that I spoke with said it's more likely that I'll be short listed for surgery within the next 2-4 days. At least I finally have some information on what's going on and things are moving ahead.

To let you all know

To clear up any confusion the Drs do have some idea that my tumor could be a Ganglioma which is the reason they want it out A.S.A.P. since Gangliomas attach themselves to the nervous system. If there is any good news to come out of this, according to my research if it is a Ganglioma they are usually Benign, recovery rate is high and the recurrance rate is low.

Have I said yet that I hate waiting? lol

Surgery so soon, this really sucks!

I went to my Drs Friday morning and the results of the MRI are inconclusive. I was told they can't get a good idea of what they are dealing with other than it's a tumour. So I am on standby to go to Hamilton General (out of town Hospital for those that aren't familiar with the area) to get it removed within the next few days. He said the Surgeon will call me with an immediate appointment for a biopsy and to expect to be admitted right away to get it removed. He said that instead of doing a biopsy one day and coming back another day to remove the tumour that they would probably do the removal and biopsy of the removed tumour in the same shot. He figures that whatever the tumour is (malignant or benign) it needs to be removed due to the fact that it's effecting me physically already and why put myself through anymore potential health issues. So they will just remove it.

My MRI listed the little culprit as a suspected Ganglioglioma. From what I was told and from what I have researched that is a tumour that decided to embed itself in the central nervous system. That's right folks, when I do something I do it well! lol Anyways, I have my Hospital bag packed and ready to go when they call but I'll be honest, I'm not too happy about all of this.

I'm trying to stay positive as is my Hubby and those around me, but today was hard. I knew it was more than likely a tumour and I knew it would have to be removed which again isn't something I'm happy about. BUT, what I wasn't prepared for when I went in this morning was the prospect of undergoing major surgery by Monday Morning. It's a lot to take in within a short amount of time with no real time to prepare, especially emotionally. But we are rolling with the punches. It's an hr to hr state we are living in at the moment and another waiting game. This time it's for the Surgeon to call and tell us when to come.

Waiting is the hardest thing

I get my results of my MRI on Friday, really I get my results in less than 26 hrs but it's driving me crazy waiting for them. I am constantly trying to disect my thoughts/feelings and can't come up with too much lol I mean whatever the Dr says on Friday it doesn't change much really does it? I know I have a mass on my Brain that needs to be removed and that will still be the case on Friday. Right now though the mass is an entity, and I just want to know exactly what I'm dealing with. Soon. I will know soon.

And now we wait

My MRI is done and I will get the results on Friday of my test. So now we wait some more:)

Drs, MRI, Results, oh my!

So it's Sunday and tomorrow I have an appointment with my Dr. I think though he expected my MRI to be done by now and able to review the results with me but I also know he wants me in either weekly or bi-weekly to go over any new symptoms I might be having. Thankfully this week I haven't had any new symptoms and I haven't had a Seizure since Tuesday but there is no rhyme or reason as to when I have them. I can go a week without one and then they come in waves where I will have 6-10 of them within a few days. We don't have a follow up date for my results yet but I will book one tomorrow for sometime this week.

So to sum up what's happening this week for us:

Monday September 20: Drs appointment
Tuesday September 21: MRI
????? September ???: Followup for results.

How it all started

For those of you who are interested in knowing how I ended up where I am today with a mass on my brain, read on.

About 5-6 weeks ago I was laying in bed just waking up and I experienced what only can be described as a "Deja Vu" experience. I was recalling things that happened the previous day and as that was happening I started to smell a very chemical like smell that felt like it was stuck in my nostrils. Wondering what the heck was happening I than started feeling what felt like a hot liquid moving around in the right side of my chest. It seemed very odd and passed within a matter of about 30 seconds, and while I was disturbed by what happened I didn't think much of it.

The next day I was out with my Mom to wheel her around to her Appointments and the same episodes happened 2 times while at her Hairdressers and 1 time while shopping so I called my Husband and tried to explain what was going on and he said it sounds Neurological. When I came home I decided to consult my good ole friends at WebMD.com and also just started searching my symptoms on the Internet and what I was experiencing seemed to narrow down to Seizures/Epilepsy or something going off in my brain and of course I start to panic so I decided to call TeleHealth. They informed me to see a DR within 3 hrs or immediately if I have another episode or they get worse. Well I ended up having another one but going to Prompt Care instead of the ER.
I'll skip the long story of my Prompt Care experience but I will say that I left there feeling crazy like everything was in my head. The Dr there essentially told me there is nothing he could do for me and sent me on my way.

My Prompt Care experience was on a Saturday night and on that Monday morning I went to my Dr who ordered an EEG and a CatScan. My CatScan showed a Mass on my Front Right Temporal Lobe that measures 5.4cm x 4.5cm which is a bit bigger than a Golf Ball. My Dr said that I would need an MRI to determine exactly what the mass is but whatever it is does need to come out. Once the results are back from the MRI I will meet with a NeuroSurgeon to discuss the next step. And my "episodes" have indeed been Seizures. They are actually "Silent Seizures" due to the mass on my brain, now my Seizures haven't manifested themselves Physically thankfully and seem to be more sensory but they are still frightening all the same.

I have an MRI scheduled for Tuesday September 21 in St.Catharines and I'm going crazy waiting for the appointment. My Dr has said that because my Seizures are becoming more frequent and more intense that I am not allowed to be alone, I'm not suppose to Climb anything and I can't have any Alcohol as it will only make the Seizures worse. So I suppose as long as I don't wander off alone and climb a tree with a bottle of Tequila I should be ok:)


I will update this blog when I get my results. Here's hoping for the best.

All the medical info

I've had this blog for a bit and it was usually just my ramblings about life, celebs, etc however I decided to blog about what I am now calling, "My Medical Journey". If you are here at my Blog it's safe to assume you know what is going on in my life Medically at the moment, however I figure that there are many people who have asked what has happened, how I've ended up where I have and are interested in keeping in the loop of my tests/results and the next steps in my journey that I will keep this blog up to date with everything going on. This way it's all in one place for you to read at your convienance and also so I don't blow up facebook or twitter with my constant updates lol If you have any questions about things you all know you can Call me, Text me, Email me, Message me here it's all good.

Hop aboard the Crazy Train!

Here I am sitting at my Laptop, and I'm thinking since this is my first post I really should make it great. It should be fun, energetic, meaningful, spectacular and maybe even life altering! But as I sit back and really think about it, I truly don't have the time, or energy for that matter, to write anything too meaningful at the moment and most definitely not life altering. So I'll stick to a few basics to start.

Why did I start blogging? Well you see, I wanted to own my own little piece of Cyber-Space Real Estate. With the current economic situation going on, it's about the only piece of real estate that I have a chance in Hell of owning. I also like to talk a lot, debate, discuss, pick brains, and did I mention talk a lot? Yeah that's me, I definitely like to talk.

So here I am at like 7pm tinkering away on my Laptop creating this blog in my little slice of Cyber-Space heaven. You might be curious to know what this Blog will consist of, to be completely honest I have no clue.

You see, if I'm surfing online and read a news article that touches me in a good way, or if it pisses me off, I will probably blog about it. If I am out and have my camera on me and capture a beautiful picture, I will probably blog about it. If I have a life altering decision to make, I probably will blog about it. If Angelina Jolie gets pregnant again for like he 20th time, I just might blog about that too.

I have a great fascination with Hollywood, but I think many of us do. It's kind of like an escape from our own reality if only for 15 minutes. But at the same time I am also passionate about real issues. Issues such as Human Rights, Gay Marriage, Equal Rights, Abortion, etc. If it's a Hot Topic I am probably interested!

So who knows what you will stumble across when you take a ride on Tara's Crazy Train. It could be something completely frivolous and entertaining, or if you're lucky it may even be something Life-Altering.