MRI

I have my first Observation MRI on Monday and I'm kind of nervous about it. I'm not nervous about the MRI it'self because I've had so many that I actually fall asleep during them lol but as I keep saying, "this ones for all the marbles!"



This is the MRI that will tell us whether Observation was the better choice to go with vs Chemo/Radiation. I meet with my Oncologist On April 21 for the results of that MRI so of course until that time I get to stew in my juices.

~Tara

Endocrinologist tomorrow

Tomorrow I meet with my Endocrinologist for the first time and I'm not sure what to expect. Just another specialist, just another day lol I have quite a few specialists these days that I am surprised I can keep them all straight! More poking, more proding and hopefully not too much torture:)

Pain Management

I've learned that a big part of my Journey is Pain Management and a Balancing Act. Up until about 6 weeks or so ago I couldn't sleep at night because my head would just hurt, well it was tough to sleep at any point because the pressure I have in my head is a constant pressure but it is made worse by laying down. It really sucks because it isn't a "sometimes" thing or a "hit and miss" thing, it's ANYTIME I lay my head down. It's hard to explain how it hurts other than to say that, you know when you sleep a bit too long and you end up waking up with a pressure headache? Well imagine that many times compounded and that's how I feel after laying my head down for a mere 5 minutes, it has really sucked to try and sleep and I've kept my Husband up many nights while I'm crying in pain as we switch out pillows, blankets, clothing, toys, etc to try and find a position in which my head would stop hurting.

I've played around with different support wedges, types and styles of pillows, toys and even balled up clothing: When you are desperate for relief you'll try ANYTHING! What I have is that first and foremost, I have a sleep limit! I use to not only be able to but LOVE to sleep 8 hrs straight, 9 if you'd let me, 10+ if I was sick but I just can't do that now. Now I can sleep 5-7 hrs at a time max. Oh, and I bought a toy worm at Walmart and use it as a pillow, I kid you not:)

I can sleep at night in a block of 5-7 hrs, however the closer I creep to that 7 hr mark the more likely I am to wake up with a headache which unfortunately stays the whole day so I try to sleep 5 hrs at night and if needed I take a 1 or 2 hr nap in the day and that seems to be working. Oh yeah and about that worm lol It's a long plush toy that they had out in Walmart for Sprintime and I thought it might just be soft enough to do the trick and it does help when I need to lean my head to the left. It's odd, but it works. And quite frankly that's all I care about right now.

I've found out that Pain Management in itself is a balancing act but at least I've found what works. As for how long this pain will be with me, I don't know. Until I get a meeting with my Neurologist I won't really know if I should still be experiencing the pain that I am right now or not.

As for why I don't have a Neurologist at the moment, it's an annoying story lol I was referred to a Neurologist in late November by my Family Dr and met with him and liked him. This Neurologist was located in the Cancer Centre in Hamilton which just proves my theory of the one stop shopping for cancer patients! He said he would take me on as a patient if I wanted him as my Dr, but since The Cancer Centre is out of town and at that time I was dreading having to travel there for Chemo/Radiation I asked if I could get a referrel from him to someone back home in the city and he said fine. So I left with another referrel in hand and had my check up with my Family Dr who said that this latest referrel actually moved his practice to Hamilton (the city the Cancer Centre is in) and not St.Cath (where I live) so I said that if I'm going to have to travel to Hamilton that I would like the first Neurologist back because I liked him and he's at the Cancer Centre and I may as well keep all Drs & Documents in one spot. Ok, so you can have him back I'm told, we just have to track him down haha My Family Dr forgot who he referred me too and even though I know the Drs name I forgot how to spell it:) so I have his receptionist on a wild goose chase to track down a specific Neurologist at the Cancer Centre lol I so see my Family Dr on April 1 and hopefully I have my referrel at that point because there are quite a few questions that I have to the Neurologist.

Just a little test

I have to run out today to the lab just for some tests to make sure my kidneys are A-OK. Apparently the contrast dye that they inject you with for MRI's and the like can screw with your Kidneys and can actually shut your kidneys down. I've been told it's rare and I'm not sure whether that was true or to just eleviate my fears but because I've had over 5 MRI's and CT Scans in the last 7 months and I'm due for an MRI next month, they need to check my kidney function.

At least today is a great day weatherwise to be venturing out:)

~Tara

4 months Seizure free

I was just flipping through my appointment/record keeping book and noticed something: I have been Seizure free for 4 months. This is a good thing and the fact that I only had 1 seizure after the surgery is a good thing too. When I met with my Neuro Surgeon he said that seizures after surgery were quite common because things are resettling in your brain so not to panic because I an on anti convulsants, but the fact that I've only had one *knock-on-wood* is great.

I still am on anti-convulsants but I was told that I would be for at least 1 year post surgery at the dose I have been on since pre surgery and at that time they will ween me off if I'm not having seizures. One can hope that eventually one day I will be off of this medication and not need it and quite frankly a year will be here sooner than I can imagine.

One day at a time.

~Tara

The outcome of my Opthamologist appointment

I've said it before and I'll say it again: Having a really attractive Opthamologist with a sexy accent who happens to have an equally cute Intern seems to make it that much easier to be up at 4:30 in the morning to get my eyes looked at:) However, an appointment with an attractive Dr wasn't the reason for my appointment, it was just an added bonus:)

So I went to have my Visual Field Test at St.Josephs yesterday and met with Dr. Rodriguez for the results and the verdict is: There really is no change. I've been saying that I have noticed an improvement in my eyesight but he suspects that's just me learning to adapt to doing things in a different manner. Basically I'm compensating in other areas for the loss of vision that I've experienced.

I managed to yet again stump another Dr too! Yay! I enjoy doing that, it seems to be my thing lol He said that looking at my eyes and the deviation that I have in them that I should have a constant double vision and yet I don't. Immediately following surgery I had very little double vision and now I don't seem to have any at all and he said that by looking at my eyes I really should. The only thing he can figure is that my brain is again adapting and it's trying and succeeding at only recognzing and processing 1 image instead of both at a time that my eyes are seeing. Weird, but cool all at the same time!

So officially, on paper, according to the test results there are no improvements to my vision, I however apparently seem to be adapting well to the perminant deficeits that I now have due to the surgery. So while there are no official improvements there is also no bad news to report which is great. I'll take what I can get and that's just fine with me.

He wants to see me one more time to see how I'm doing but that isn't until Jan 2012. Until we meet again Dr.Rodriguez :)

In the larger scheme of things as well: If this is the ONLY perminant damage I come out of this experience with I will consider myself both lucky and blessed.

~Tara

I'm keeping this blog too!

So I decided to keep this blog in addition to my new blog so now I have two! The other blog is on a cancer blog site and I will keep it solely for updates on my cancer appointments and things related directed to cancer. This blog I will use as my rambling blog to update about other medical issues I'm facing. So yep.....2 blogs I'll have.

My new blog, check it out!

So I've had this blog for a while and have continously updated it as I venture through new phases but I have started a new blog elsewhere and will be moving my posting to there. I have found a new home at blogforacure, which is a great community of cancer fighters, survivors and supporters that offers alot of great information and support. If you want to continue to collow my blog you can do so at the following link. Thanks to everyone for your support.

http://taraf.blogforacure.com/weblog

The Rollar Coaster that is my life.

So I went to McMaster Friday having travelled on the Highway with a VERY full bladder to get there and be asked by the technician, "why do you have a full bladder?" Well let's see, "I'm here for an Ultrasound on my Ovaries to look for cysts" ya know the one my NeuroSurgeon ordered!? Well the technician consults the requisite and we verify all of the information to make sure it's mine and sure enough I'm not there for my ovaries but rather to have an ultrasound on my liver. *sighs* My liver? Yeah I know, I have no clue either, but the technician must have felt so bad for me that she actually did an ultrasound on my ovaries since she said with a full bladder they should be able to get a good picture of them and sure enough she did. She then let me pee, THANK GOD! Seriously what person in their right mind says, "fll your bladder and let's press on it!" seems kind of cruel doesn't it?! Anyways after I was able to pee she then did an ultrasound of my liver. So I had a COMPLETE abdominal ultrasound and will review those results on Feb 25 when I meet with the Drs again.

I recieved notification of my first Observation MRI which is April 11 at Juravinski. I had been going to Hamilton General Hospital for my MRI's but it appears they now have an MRI machine at the Cancer Center which is good because now it's "one stop shopping" for Cancer patients. lol that sounds horrible doesn't it? But I meet with my Oncologist on April 21 for the results of the MRI and to say I'm nervous is an understatement. I was talking to my Hubby about it and trying to pinpoint it but I think there is a part of me that is waiting for the hammer to fall, waiting for the Dr to say, "well we gave observation a try but now we need to do Chemo." I still have to remember one thing at the end of the day: I am a Cancer Patient, and those words are very hard to swallow. I was fortunate enough to have an AMAZING team of surgeons that operated on me and I have chosen as my Treatment, Observation but I could have instead have chosen Chemotherapy & Radiation as it was an option presented to me. Infact I was told that if at anytime I change my mind and wish to do Chemo & Radiation that I can do that as well, but unless it is absolutely necessary it isn't something I'm going to do.

Of course I try to remain as optomistic as possible and hope for the best, but this waiting is something that sucks big time! In fact the Neuro Oncologist I met with in December said that Observation is something alot of people can't do becaues emotionally and psychologically it messes with them and I get that. For the last 2 months I've been wanting my first MRI to come in hopes it would get here, the results would be good and than it would be over and I'd wait another 4 months, and now that it's in the near future I'm anxious about it. So please, keep the prayers and positive thoughts coming because I can definately use each and every one of them.

~Tara

Appointments.

So I meet with my Family Dr this friday morning and than I have an appointment at McMaster in the evening for an Ultrasound. This appointment is in regards to cysts on my ovaries that I've had for years but no one ever did anything about. So I go and get a Brain Tumor and for some reason the cysts on my ovaries come up in conversation with an RN because my Nuerosurgeon requested some tests to see if I have PCOS. Yes, it's all a weird weeved little web lol but I suppose once this is done and over with I will more than likely have had a physical from head to toe from the inside out! Or as my Aunt Lynn says, I'm gonna start glowing with all the MRI's I have had and will continue to lol

It's up and running.

I'm happy to say that the Hope,Believe,Fight website is up and running after final tweeking. Feel free to pass the link on to anyone that may need some help in locating Cancer Resources whether in Canada or the United States.

Head pain galore!

This week has been a rough week with my head at times feeling like it is going to explide! I am certain it is pain/pressure due to surgery but I do need to speak to my Dr about it soon. It's quite an intense pain throughout my head, I actually call it "skull pain" because that's what it feels like, it feels like it is travelling through my skull. I also ended up getting the stomach bug that's been going around so it's been a crappy week to say the least. I am however at least feeling somewhat better so that's a good thing! I have 2 appointments at McMaster in February and I'm sure they will be interesting as I will be getting some test results back. For now I'm just taking the Tylenol when I need it and trying to rest as well but it's quite hard to lay down and sleep when any pressure on your head just intensifys it all. Oh well, fake it till ya make it right!?

~Tara

3 months

It's been 3 months since my surgery, yep just 3 months. Alright who is sick of me saying "it's been..." every month? lol Well guess what? I don't care! Seriously, each day is a gift and each month is a milestone for me. I've continued to do well, infact better than my Drs have thought which is good. My only real issue that I still have from the surgery is that I still do have double vision but it isn't a constant thing and it does come and go so it makes it bearable. My perifrial vision is still buggered a bit but when I see my Opthamologist in March I'll see what "official" progress I've made in that area. My head seems soft on the right side it's really weird and I definately need to bring it up to my Dr the next time. Inbetween where the incision scars are it's as though my head is moist. Sounds gross and doesn't make sense right? lol Well the only way to describe it is gross so bear with me k!? Anyone who has taken a bath or shower and got out without pumicing their feet knows how that dried up calousy bit feels on say your heel, it's that weird texture, ya follow? Well imagine that texture but in a nice patch covering one side of your head, that's how it feels inbetween my incisions. It's a constant moist feeling, not wet and it's not damp but you can feel it's not normal dried scalp, it's really odd and it just won't seem to dry up like your scalp should.

I know it's only been 3 months since my surgery and sometimes it feels like it's been a lot longer so I figure I should be further along in the healing process so this may be normal, but at the same time it may not be so I definately need to speak to my Dr. But really those are my only real issues at the moment which I suppose is a good thing! I have a few appointments next month at McMaster but thankfully I only had the 1 this month!

Cancer SUCKS!

We all know someone that has been touched by Cancer, you may have even been touched by it yourself but whatever the case may be: CANCER SUCKS! As you all know on October 21, 2010 I had a Malignant Tumor removed from my Brain, my surgeons got the whole tumor but not everyone is as lucky and not just with Brain tumors but with other Cancers as well. One of those people would be my friend Tammie whose brother Ricky, at just 25 years old he is losing his one and a half year battle with Colon Cancer, a disease that use to be uncommon in young people is sadly becoming all too common. And then I think of little Molly Campbell from Vancouver Island who just before Christmas this year and at just 28 days old was diagnosed with Acute Lymphoblastic Leukemia and is currently undergoing daily painful chemotherapy. Stories like these not only break my heart but they make me so mad, CANCER SUCKS!!

Back in September I went from a normal day to day routine to finding out I had a cancerous brain tumor, to having major surgery and then being told I no longer have any tumor in me. The last few months have been trying, emotional and even life changing and that's what brings me to this post. When faced with something so serious you do ALOT of thinking, you wonder if you are dieing, you wonder if you've done anything in life that mattered, you wonder why you've wasted all of the years you have on frivulous things but most of all you wonder how things will be different when you come out on the other side. Well I'm about to tell you you how things have changed for me. First of all you all have been so wonderful and supportive of me during this time that I feel blessed beyond words, so thank you. And I now more than ever have a hate-on for Cancer and wondered what I could do that could help someone else that is facing cancer and that brings me to this: www.hopebelievefight.com

When I was diagnosed and also in early stages of recovery the one thing I did was read and I read anything and everything available to me to find out about cancer and also about what resources were abailable to me from the government and it was hard to find this information. Not to mention the fact that I didn't physically feel up to spending time looking for it anyways but it was just plain hard to track down! So I decided that my way of giving back and paying it forward would be to create a website with multiple cancer resources listed in one place. On the website you can find anything from local cancer centres to government disability programs, to lists ofcancer fighting foods to words of hope. And so for the last few weeks I've been compiling information that I already had and searching out new information that I needed and designed a website that has Cancer Resources listed by Province in addition to many other things. I hope that by placing all of this information in one spot online that it helps someone that is facing cancer and maybe makes their journey a little more bearable.

While the site contains alot of information specific to Canada it also contains other great information as well and has been recieved well already as we've recieved visitors and messages from all around the world. If you can pass this link on I would appreciate it, however my ultimate hope is that one day we won't need resources like this, we need to take out this violent predator that has no regard for human life and we need to find a cure!

~Tara

Hope,Beleive,Fight
for a world without cancer.


You can read an article on Ricky Here.

You can follow Baby Mollys Journey Here.

My NeuroSurgeon and my Ovaries?

I had the first of what will be many visits at McMaster Hospital in Hamilton today and met with a Nurse practitioner to go over my Medical History, get some bloodwork done and partake of the ever dreaded peeing in a cup. Speaking of peeing in a cup I want to know why they don't make those cups a little more "female friendly" for us girls that have to squat! Anyways I was quite surprised when the nurse said to me, "did you know that Dr. Kachur requested you be tested for PCOS?", I wasn't aware of this request and kind of confused by it too. For those that may not know or remember, Dr. Kachur is the Head NeuroSurgeon that performed my operation and why he's requesting tests to be done on my Ovaries to check for Polycystic Ovarian Syndrome is beyond me lol. I know that when I was wheeled into the Operating room I asked the Surgical Team if they all had their morning coffees and they had (hey it was an early operation I wanted to make sure they were awake!) and they made sure that I hadn't had a cup of joe though and I really needed one! But I also told them to feel free to do what they want to me once I was knocked out, I'm thinking that may not have been the best thing;) I can't make the connection between a Brain Tumor and my ovaries so I find it quite entertaining to say the least.

So now aside from my many other appointments at McMaster I must return to undergo an Ultrasound *sighs*