A Piece of My Mind

Need Your TV Mounted?

2009-08-18T10:23:00.000-04:00

I know just the people who can run the wiring through the wall from you! Yes I'm back again. Last Friday I went for my 7th and hopefully last surgery at Toronto Western and I really think this one ought to do the trick. Amy drove me to the Hospital at 6:00 am on Friday and I did my mandatory MRI (oh so relaxing) and then I was sent to pre-op to await my table. I know I was joking about the table for one thing and all but do you know what they gave us while we waited? One of those big plastic coasters that lights up when your table is ready (just like at the Keg). So there we were, me in my breezy gown, and poor Amy on 3 hours sleep waiting for our table. Now when I got there, I was told that I would be going in at 8:50 am so I didn't have a lot of time to think about what was going on. I was supposed to go in at 8:50, but I didn't. They decided to take the patient next to me first and I was told I had to wait because there were no beds for me (I guess they didn't know I was coming...). I was assured however that I'd be in by 3:00 or 4:00 pm and I was to feel free to walk around (in my gown) for the next few hours. To cut a long story short (I know, too late) I was called in at 3:20 and they wheeled me into the O.R.

The technical term for what they did was convert my Omayrra reservoir into a VP shunt. What it felt like they did was put the end of a coat hanger in through my stomach, attach the end of a hose from my brain and pull it through so that I now have a line going from my brain to my stomach so when the cyst starts to fill it can empty directly into my stomach and I will no longer have to have the reservoir aspirated on a bi-weekly basis. Sounds good. Feels awful. When I awoke, I had a zipper in my head, neck and abdomen and there was no way I could move, little lone go to Ellen’s Keg Party that night (bummer). So another three days in my favourite hospital and I was send home with some Hillbilly Heroin to ride it out. Well, I'm glad to say that I got the staples removed yesterday and today is the first day of my new life. I plan on living it to its fullest this time and not take anything for granted, just as soon as Restaurant Makeover is over....

Just kidding. I am looking forward to being with Amy and the kids a lot more and doing more things with them. They've put up with enough in the last two years and now its payback time. It's only one small way in which I can thank them for their patience and love.

In the meantime, thanks to everyone who called and wrote, you have helped more than you will ever know.

Sean.

Remember When I Said Third Time’s A Charm?

2009-07-29T10:56:00.002-04:00

Well I must be extra lucky because now I’m going in for surgery number 7! That means 2 charms and once more for luck! Looks like everything is finally going my way. How did I get so lucky you ask? Well I just spent another fabulous four night stay at my favourite hospital after waking up on Friday morning with a severe headache (huh, that’s new) and feeling so sick that I couldn’t keep anything down – even water. Luckily I was staying at my parent’s place for the night because Amy and the kids had to go to St. Thomas for the weekend and it seems that I now need a babysitter in case of this like this. Well, they carried me to the car, laid me in the back seat and my Dad once again set the car on autopilot and we headed to Toronto Western. So once more I was ushered in and looked after by my friends where I was drained. This time however, instead of sending me on my merry way, I was told I would be staying. “Great” I thought, “Now maybe they’ll start the injection treatments that they’ve been promising me for months.” Yes the interferon injection treatments that they told me I’d be starting a few months ago. You know, I’ve been wondering why they’ve been dragging their feet with this. If it’s going to make me feel better then why not get on with it? Well the answer came down that they were not going ahead with the injections after all. I was very disappointed and demanded to know why. “It’s never been done before.” No one’s ever gotten injections? “Not in the brain.” I don’t care let’s just go. “The risk of side effects are just too great” came the reply. Come on though, how bad could they really be? Well here’s the list they gave me:

-Flu-like symptoms following each injection (fever, chills, headache, muscle aches and pains, malaise)

-Tissue damage at the site of injection

-Depression and suicide have been reported among patients receiving interferon

-Other side effects that may occur are fatigue, diarrhea, nausea, vomiting, abdominal pain, joint aches, back pain and dizziness.

-Still other possible side effects are anorexia, congestion, increased heart rate, confusion, low white blood cell count, low platelet count, low red blood cell count, an increase in liver enzymes, an increase in triglycerides, temporary skin rashes, mild hair loss or hair thinning, swelling edema, cough or difficulty breathing.

You know, upon further reflection, I now tend to agree with the decision of the doctors. Besides, who wants diarrhea? So now what? Hang in there? There is one more option – another brain surgery. Not to remove the cyst but to redirect to drain from going into the reservoir in my head to a tube in my stomach. This way the cyst can drain all it wants and it will never need to be aspirated. After spending every other weekend in emergency with needles sticking out of my skull this sounded great. And all they have to do is open up my skull and run a tube down my spine into my stomach. I know it almost sounds too good to be true but this is what we’re doing. I’ve already signed all of the permission papers and done the pre-op work and now I’m just waiting for a table for one in the O.R., which I’m supposed to hear about by the end of the week.

You know what? I’m really looking forward to this one. I have very high hopes for this and I think this is the one that will make me feel a lot better. Here’s hoping anyway.

What Happens In Vegas……..

2009-06-24T08:56:00.000-04:00

Doesn’t always stay in Vegas (e.g. Herpes). So since everyone is asking about our trip I figure I’ll take up a bit of this note to fill you all in. Let’s see; it all started way back on June the 3rd. Once again my vision was gone and I was experiencing the awful headaches so I figured I’d go in to the Hospital and get a quick tune-up before we left. Unfortunately, they kept me overnight to kee3p an eye on me and run more tests so I ended up spending my birthday there – Good Times! I did make parole that night thankfully and the next morning we were picked up by Amy’s sister Jen who took us to the airport and gave us the VIP treatment through Westjet and into the boarding lounge. Jen works for Westjet and that’s how Amy got the tickets for my birthday. Once we got to the boarding lounge there was just enough time for one quick announcement. Jen got on the P.A. and asked that Amy and I stand (in front of lounges 16 – 22). She told everyone that we were taking the trip because Amy wanted to take me away for my 40th birthday (I like to refer to it as the 19th anniversary of my 21st birthday but summantics…). She told a quick story of what we have been through for the last year and a half and the she said the I would like to say something. At this point I dropped to one knee, pulled out a ring and held it up, telling my beautiful wife that SHE is the reason that we are all still a family, SHE was the glue that kept everything together and what a wonderful wife she was to be able to get up every morning, get the kids ready for school, take them, go to work, visit me at the hospital, come home and pick them up, do their homework, make them dinner, make them lunch, put them to bed and then do it all over again the next day while at the same time managing to save enough for this trip on one income (I told you she was wonderful). Then I looked at her and said “Amy, when we get to Vegas, will you do me the great honour of marrying me all over again?” Yes, I know, I’m a romantic bastard, but when you have a wife like this you have to find ways to keep her. Thankfully she said yes and that night we went to the Little Church of the West and we got married. Now the rest does stay in Vegas, except to say, we had a great time and we both agreed that five days was long enough.

Since then everything had been going fine. Until last Saturday. The night before we were in Port Credit with all of our friends having fun planning on seeing Sam Roberts (which we didn’t make but I think we had more fun sitting on Jamie’s front stoop). The next morning I awoke with a terrible headache and I started vomiting at 5:00 a.m. At first I thought it was a bad hangover but then I remembered that I only had 4 Coors Light all night. So it was back downtown again and I was checked in to my favourite room at the Toronto Westin, er, I mean Western. Thing however didn’t go quite as smoothly this time. They did a CT Scan and decided that I needed draining but when the doctor put the needle in my head to suck out the fluid nothing came out. “This odd” she said. “The scan shows fluid but nothing is coming out. Maybe I’ll try a bigger needle.” And she did! Two times she stuck a bigger and bigger needle into the top of my head and nothing come out. Now usually when they do this oh so delicate procedure I don’t feel the needle but when the aspirate it feels like someone is pushing both eyeballs into my head with their thumbs. This time ALL I could feel was the needle. After the third try we both agreed that maybe we should take a break and try again in the morning. You know how some fathers get breakfast in bed on Father’s Day? We so did I. Too bad it was crappy hospital food. Anyway a little later one of my regular doctors came down and we tried it again with a regular sized needle and he managed to get 8.5 cc’s out in about 10 seconds. So they did another scan and everything looked good to go again so I was sent home to enjoy what was left of my Father’s Day, which I did, thoroughly.

Confused? Just Wait…

2009-05-25T22:12:00.001-04:00

Well, I wasn’t supposed to see my Neurologist again for another 6 months but because of my recent daytrips to Emergency I was asked to go down for an appointment today which worked out perfectly because I already had an appointment with my Endocrinologist this afternoon. Things were definitely looking good this morning and I just knew everything was going to go my way. When I got in to see Dr. Gentili (my new Neurologist) he took a look at my most recent MRI and let me know that the cyst was still refilling but not to worry because it was not as big as before. Not worry? I gently reminded him that while it may not be as big as before it was still causing daily headaches and double vision. I told him how frustrated I was by all of this. Thankfully he let me know that I was not the only one who was frustrated – they were too. Well that put my mind at ease. “Can’t you just cut this thing out?” I was told that this was not an option. Because of the location of the cyst, there is a great danger of the operation permanently affecting my vision, my memory and my hypothalamus. “Okay, what can we do then?” It seems that reradiating people sometimes works but I’ve already done that maximum of that, so that was out. I was then told that “we” could start an injection treatment that involves receiving daily injections of a compound into my head for a month that will “hopefully” dry out the cyst. Sounded good to me (what options did I have?). Great, so they’ll talk to some other doctors about the procedure (it’s never been done before) and order the compound. That way, the next time I have to go down to Emergency they’ll be ready for me. “so, what do I do in the meantime?” Are you ready for this? “Hang in there”. Hang in ther? Are you kidding me? All I could picture was that stupid poster of the cat hanging from the tree. That’s a pretty easy thing for them to say but I have to live with this and it’s not only affecting me but my family as well. I was pissed. Luckily, on my way out I ran into my first Neurosurgeon Dr. Bernstein and he asked me how I was. I told him everything was crappy (now I’m paraphrasing here because while the British may keep a stiff upper lip, I’m Irish and we tell you how the fuck we feel). He reassured me that he would take a look at my scans as well and see if he could add anything which immediately made me feel better – stilled pissed but better. Now I was off to PMH TO SEE Dr. Ezzat my Endocrinologist.

When Dr. Ezzat asked me how my first appointment went I let him know (Irish). His response was “I can’t understand why he won’t just operate. I think I’ll call him.” I reminded him about the whole vision / memory / major gland thing and he asked what other options there were. I mentioned the injections and he snapped. “No, I don’t want to do those. Do you know what the side-effects are? Loss of weight, loss of appetite and vomiting on a daily basis” Suddenly this didn’t seem like the best option anymore. I asked if there were any other fun options and you know what? There was. I could take a pill that might do the same thing as the injections and the only side-effect to that is a severe depletion of white blood cells. I think my friend Paul said it best when he told me I had two choices “Shit on a plate or shit in a bowl.”

Now, lets sum up what we’ve all learned today shall we? One Doctor wants to operate and one doesn’t. One Doctor wants to do daily injections into my skull and one doesn’t. Then there’s a third Doctor that’s going to look at things and see what’s going on. Anyone else have one of those deep confusion headaches? Time for some Advil. All I can say at this point is that no matter what happens in the weeks ahead you all know I’m going to be just fine because remember, I’m the guy that put the F.U. in FUN.

Just When I Thought I Was Out...

2009-05-16T12:04:00.001-04:00

This bloody cyst drags me back in again! Wow, I can’t believe I haven’t updated since March. The good thing about that is that that’s because there hasn’t been much news: Until recently. To say that things have not been going as expected lately may be a bit of an understatement. After my recent 2 month "vacation" I was feeling pretty good about things. My cyst had gotten smaller and now it had not needed draining for 8 weeks (instead of the 4 -5 days that used to be the norm). Then one fine day about 3 weeks ago I went for a great dinner at the Coleman compound and had a great time. The next morning I awoke with the worst headache and the good old double vision which meant it was time for another trip to Emergency to have my cyst drained. Disappointing, but hey, it was a good 2 months. The next Wednesday I had an appointment with my Neurosurgeon. Now this was weird: I was taken into a boardroom instead of an examination room and I sat down at a long conference table with about ten doctors who were looking at slides of my tumours (colour slides taken during my operation – gross), and my long list of CT scans with the dates of each one. While they were discussing my case like I wasn’t there they seemed very optimistic about how long in-between treatments it took so they scheduled an appointment for 6 months from that date. Things were looking up again. Unfortunately I had to make another unscheduled trip last Wednesday for another drainage. When I asked them why this thing keeps popping back up again they told me they didn't know but they were "working on it" (so I've got that going for me). As always, I guess I'll just keep rolling with the punches and keep up the F.U. attitude and keep updating as things happen. Until then, thank-you all again for your concern and kind words.

Let's Clear Up One Thing First....

2009-03-06T08:03:00.002-05:00

After re-reading my last blog entry I feel that I should perhaps clear one thing up before we go any further. When I speak of the doctors having to aspirate the cyst, I am talking about the act of draining the fluid from my head by inserting a large needle into my skull and drawing the liquid out. Let's look at the medical definition: Aspirate: Medicine To remove (liquids or gases) by means of a suction device. This is NOT to be confused by the similar looking term Ass Pirate (don't pretend that you don't know the definition just to get me to write something here).

O.K., so here is the update so far: After my last update I was home safe and I said that I knew things were going to turn around for me. Unfortunately, what turned around was me. I turned right around and went back to Toronto Western. The weird thing is that it wasn't because of headaches this time but because of the amount of times I was going to the bathroom (something they specifically told me to look out for). This time when I got back I did all of the usual tests (no math thank God) and the set up an appointment with an endocrinologist who checked my hormone levels. Now this is where it gets interesting. He came by to see me a few days later and thanked me because he said that it was Friday afternoon and usually all of his students want to go home early. But when my case came across his desk no one wanted to leave because it was so unique and interesting. This of course made me feel great because as you all know, I am always willing to go out of my way to help out. What he told me next however was a bit of a shocker. It seems that when I had the tumors last year they actually "completely destroyed" my pituitary gland. For those of you who do not know, this is also referred to as the "Master Gland" because it regulates everything in the body and now mine was "as useless as a tit on a nun" to use a quaint Irish expression. Now, this has nothing to do with the actual cyst or the reason why it seems to refill at the speed of light but now that they know this, the have put me on hormone replacements, thyroid medication and testosterone shots which will help with my energy levels (and hopefully my machismo) which has made me feel 100 times better already.

So now I'm home again and feeling pretty good. I've got some follow-up appointments coming up next week and they're going to hopefully start a new treatment program for the cyst soon after that where they're hoping to dry out the little bugger for good. I can't say how wonderful my family and friends have been throughout this whole ordeal and the calls and emails of encouragement have been unbelievable. Thank-you everyone. They all make me feel better than anything I could ever get from a doctor.

Well, that's about it for now, as usual, I'll keep updating as I can. Thank-you all again,

Sean.

Faster Than A Speedign Groundhog...

2009-02-24T18:23:00.002-05:00

Well, I'm back home again and as Mark Twain once said "The reports or my demise have been greatly exaggerated". Here's the story:

I went in on February 4th for my scheduled operation where they went in through my nasal cavity and drain the cyst (while I slept and left most of the work to them).. Everything went according to plan and I was in post-op 4 hours later. The next day I was down on the 5th floor recovering in a comfy hospital bed with a rubber pillow where I basked in the glory of a room with no view, nothing to do and a roommate who coughed and talked in his sleep all night. Now normally this would have bothered the crap out of me but since they were coming in to take my blood every two hours there was no way I was going to sleep anyway. Besides, I was feeling good again so what did I have to complain about? I was staying the Toronto Western NOT the Toronto Weston (I think). The following Sunday (Feb 8th) they came in to tell me I was going home and I got out of be to get ready but I MAY have jumped the gun. As soon as my feet hit the floor I started seeing double, got dizzy and started vomiting. That's when they may have started changing their plans for me.

I was sent down for a CT Scan and it seems that little bastard had refilled already and needed to be drained again! So back to the O.R. and in through the nose again. This meant another week of "resting" in beautiful Downtown Toronto. This time I even got a private room and it really wasn't bad at all. Before I could say "Saline Drip" I had a small pouch installed in my head just under the incision from the first operation where the cyst could drain and they could aspirate without opening my head back up (which I was all for) and it was Friday and they were sending me home again. This time I made it all the way home thanks to Scott & Kelly Coleman who were visiting when I got my walking papers and I went straight to bed. This would have been great had it not been for the fact that that's where I stayed until Sunday. The pain in my head got so bad that by Sunday I could no longer lift my head off of the pillow without going blind with pain. At this point Amy decide to take me back to Emergency for them to have a "look-see" and I was bundled into the back of the car and driven downtown again. Once I got to T.W. they took my in and aspirated (a fancy word for sticking large needles into the top of my head and pulling the fluid out that way) about 15 cc's. (about a shot & a half to put it into perspective for most of you).

And that's where I've been since my last post but I'm home now and I just know that things are going to start going my way! Thanks again for all those who sent best wishes.

Remember; Keep your head in the game but maybe wear a helmet!

Sean.

A Quick Update

2009-01-31T16:47:00.001-05:00

Okay, well, for better or worse they've decided to move the operation up a day. This means I'll be going in on Wednesday the 4th. This time they're going to try something new; they're going to attack the cyst from below. I'll wait for the laughter to die down while you all get your minds out of the gutter. They're not going in from that far below. They're going in through my nose and they'll drain it from there. They figure it'll take about 4 hours and then they'll keep me for three or four days. Don't ask me why, they sent me home the same day they drilled holes in my head. It's probably best if I don't think about it too much. Any way, the next time you hear from me I will hopefully be a hat size smaller and feeling a little better. I guess I'll just have to learn to keep my finger out of there for a while (God knows how I'm going to be able to drive though).

Take it easy,
Sean

Third Time's A Charm

2009-01-23T09:35:00.002-05:00

Hey everyone, sorry for not updating lately but I've been waiting for something new to tell you. Well, guess what? I've got something new to tell you. (Didn't see that one coming did you?)

Anyway, I went for my latest MRI on Monday (which I now have to do every couple of months) to see if there's anything going on in that head of mine. I will spare you the details (complaints) about the MRI since I've covered that dead horse once or twice already. Well, it turns out that there is something happening up there on the top floor. Once again the cyst (who I am now thinking of naming Stymie since he's becoming somewhat of a permanent resident) is back from vacation and bigger than ever. This explains the partial loss of vision and the constant fatigue (thank God because I was starting to think that my Mother was right and it really was making me go blind. You know what I'm talking about. Don't pretend that you don't).

But I digress. After the MRI I went over to see Dr Bernstein and he has decided to hook me up with another surgeon who will try draining Stymie again. They are currently trying to get me into Toronto Western for the operation (which I'm hoping to be asleep for this time) within the week. If they can't get me in as elective they said they would get me in as emergency surgery.

Well, that's about all I have to report so fr. I'll keep you updated on how everything goes when I can.

God bless.

Hope Everyone Had A Great Christmas

2009-01-05T22:10:00.003-05:00

I know, I know, it's been a while since my last update / post (Geeze, you're starting to sound like my mother when I "forget" to call her for a while). Seriously though it is nice to know that everyone cares about what's happening.

So what is happening? let's see.... We had Christmas which was nice. We went to sunny St. Thomas (no - Ontario) to visit Amy's family who always spoil the kids (and us). Then we had Christmas day here at our own home which was awesome. We had so much fun that we missed Mass again this year (which was also awesome if you ask me but don't tell Amy & the kids). On boxing day we went to my parents and then we came home for the rest of the Holidays. Other than that not much happened. Oh yeah, wait a minute, I had another MRI. Turns out the f**king cyst has grown back again! I swear to God this thing is more stubborn than a drunken Irishman at last call, and those of you who have been with me at last call know exactly what I mean.

So the good times just keep coming. I'm still exhausted every day from the radiation and now there's this little "bundle of joy". Well, Amy took my down to Toronto Western to meet with Dr. Bernstein who has the last say on what happens to my nut (not nuts) and he told us that there were basically three options: 1. Go in and drain it again (which, I may be crazy lately but I'm not that crazy so I voted against that one), 2. Let the brain adapt to the cyst over time and perhapes it will drain itself. If it doesn't, they can put a shunt in my head to manually drain it, which gave me visions of myself walking around with tubes sticking out of my head. I know it sounds greusome but I just pictured myself sitting in the middle of the lawn on a hot summer day shaking my head so the tubes flailed about like my own personal sprinkler. Finally choice number 3; wait 6 weeks and have another MRI to see if it drains itself. I voted for number 3.

Unfortunately this is where we are right now. Waiting to see what happens. I know it's a short post and not as full of my witty bon motts as usual and I wish it were a different story but this is all I have at the moment. I do want to thank everyone for the cards and emails, they really do help my spirits. I promise to keep everyone up-to-date when things start to happen. Until then, as always, take it easy,

Sean.

Dates Dates Dates

2008-11-22T10:41:00.000-05:00

Okay, you may notice that the dates on the headers on the posts are different from those in the body of the text. This is because I'm not quite that technically savvy enough to make them jive (it is also Saturday morning and I'm feeling to lazy to do it at the mo). OKAY; let's get it on! Here is the first of my poorly written, horribly spelled and atrociously edited entries. I hope you enjoy reading it as much as I did going through it (maybe even more).

WELL, I JUST SET IT UP.

2008-11-22T10:37:00.000-05:00

Hey hey, look at me, I'm Bloggin' here! Wow, my first post. (Actually, what I'm going to do for now ia just import what I've written up until now from my Facebook account so please enjoy!

I Needed That Like I Needed Another Hole In The Head

2008-10-21T11:03:00.000-04:00

You know, it's kind of funny; I don't remember running over God's cat at all that day. You think I would've felt a bump in the road or I would have seen a brilliant flash of glorious light and hair float up to the Heavens. But nope. Nothing. Well, I think I ran over God's cat anyway. At least that's my theory. It must have happened sometime in March because since my operation on April Fool's Day, things have been kind of going down hill. I can't say it hasn't been interesting though. God's got a great sence of humour.As you know, I did go in on April Fool's Day for my first operation to remove the tumors, and the plan since then has been to get what's left by radiation. Well there's been a slight change in the plan. Last week started getting bad again and I was regressing to where I was before the operation so they sent me in for another CT & MRI. Turns out the cyst had grown back at thge base of my brain and was interfering with the radiation treatments on the tumors. Something had to be done. So they gave my the release forms to sign on the Wednesday for another operation on Thursday. Now does everyone remember what they most important lesson we were all supposed to learn when filling out hospital forms from last time? That's right: READ THE FINE PRINT. Guess who didn't? This is what I found out the next morning just before goping into the operating room. Turns out they intended to drill a bunch of holes in my skull (10 all together) to drain the cyst and I was to be awake for it all. Good times. You know that feeling when you read something and you immediately go "WAIT! WHAT!?! oh God... If I thought I could've carried that bed I strapped to on my back out of the hospital I would have. But I went in.I will spare evryone the details but let's just say I could hear the drill and feel the vibrations. There was a lot of yelling. By me. Anyhoo, 4 hours later I came out. They had drained the cyst and I was recovering. They even gave me some "Hillbilly Heroin" (Oxycodone) for the pain. Which is just great because now on top of everything else I have to keep my eyes out for the Olson twins trying to mug me for my stash.That was all on Thursday. The next day I went back down of another CT so they could map out my new brain for the next round of treatments in case anything had moved. I guess they just wanted to make sure that the little squirrel was still on his wheel. To do this of couese they had to put my head frame back on so I was in the exact position that they wanted me. Funny thing about frames; they have to be put on extremely tight so they don't move. Well they put the frame over my head and then attached the velcro straps to tighten it. There was one nurse on each side of me with a hand full of velcro and on three they started pulling. Same as usuall except the straps went right over where they had drilled not 24 hours ago. They stopped pretty quickly when I let them know in my own gentle way that there was some slight discomfort. It was at this time that another nurse came in and said that a baby had just been brought over from Sick Kid's and need the room. We were going to have to wait an hour and try again. At this point I just wanted to go home and I told my Dad this. This is when he gave me some of the best advise ever. He just looked at me calmly and said: "Look, now you know what you have to do. You just have to do it." He was right. I can't argue with that. We went out for a walk and an hour later they tried again. I would like to tell you that it was no problem and I was very brave. I would like to but I can't. They tried again and I just couldn't do it. They finally gave up and decided to wait until Monday for the swelling to go down.Well I went down yesterday and they did it no problem. They rescanned my and last night I got a call from PMH to say that everything looked good and they can continue with my treatments as planned. So I'm on my way back down this morning to get zapped. I don't really want to go. As a matter of fact I don't want to go at all but as a wise man once said to me ÈNow that I know what I have to do, I just have to do it."Thanks for all of the calls and emails. I'm actually feeling a lot better now and I'll keep you all posted.Sean.

So It Starts Tomorrow............

2008-09-29T11:02:00.000-04:00

Well, tomorrow is the big day; radiation treatments start at 12:15 at the Princess Margaret Hospital (PMH) and I'll be going down every day for 6 - 8 weeks. Last week I was down at PMH to get fitted for my new radiation mask. This is how they aim the radiation shots in exeactly the same place every time. Generally when they do radiation (say on the breast) they'll put little x-mark tattoos on your skin so they can line up the machine. Since the're doing it on my head, they have turned down my request for lightning bolt tattoos on my skull and have decided to go with the mask. Now when I say mask it is actually more like a giant metal halo that fits onto my head by a mouth piece and velcro straps. To make sure it is always in the same position they fit a plastic dome over the top and slide probes into holes that are lettered A to W to measure the distance from the frame to my skull. Each measurement must be within 1 mm for the original readings for them to proceed. One I have this shiney bad boy on I'm lowered onto a table where the frame is attached and they zap away. The actual treatment only takes about 20 minutes and I won't feel anything (It's like getting hit with a flashlight). This will be done from Monday to Thursday and I will consult with my Oncologist every Friday.There may be some side effects to this but I think I have them covered. I will be very tired but Amy's Mom & Dad are coming tomorrow morning to stay with us once again and help around the house as well as drive me to my appointments everyday. I will also lose some patched of hair where the beams hit my head but I'm thinking of getting a nice toupee to cover up some of those bald patches. What I have in mind is something special maybe bright red; something that says Hey Ladies look at me! For fun I'm thinking of attaching it only on the back os if I run or if it gets windy the top can flip up and it will look even MORE special. Almost like I'm waving at you saying: "Hey how's it going? Hey over here! No over here! This way! Yeah over here! How's it going?" I think that would be nice. It will show others that I'm concerned about what's happening in their lives as well and not just what's going on in my own little universe. Because that's the kind of guy I am. Just remember, you may not hear from me for a little while but I will always care about what's happening with all of you.

Thank-You

2008-09-27T10:58:00.000-04:00

As some of you may know, I am currently on the fast road to recovery from brain tumors. Personally I think I'm pretty good to go. I feel great and I'm here at home climbing the walls to get out and get back to work. Unfortunately "the man" says I have to sit tight for a while longer and have radiation (first he says I have to wear pants and now this!). Well fine, like I've said before, I guess they knew what they were doing when they used the melon-baller to scoop out the bad cherries in the noggin, they may be right about this. In the mean time I'm taking things as they come. It's been a great summer hanging with the monkeys and seeing things clearly for the first time in a loooong time.Let me clarify:While I was suffering from the effects of the tumors I had absolutely no short-term memory what so ever (along with complete loss of vision in one eye and other fun side effects). During the time right before my diagnosis and my operation I was reduced to a walking shadow of not just myself but a human being. It got so bad that at one point neither I nor Amy could take care for myself any longer.I still have very little recollection of that time (as a matter of fact I have no memory of any events for the two to three months leading up to my operation) but as time goes by and I heal I am finding out more and more of what exactly went down. Some of what I hear is obviously very disturbing to me (at one point I could not recall my own children) but at the same time, some of what I hear makes me thank God every day for the people in my life and more incredibly, the people I have never met. Let me relate to you what I know so far:Yesterday I took the kids to Ontario Place because Amy's sister who works for Westjet got us tickets for their family day (she's always doing this kind of thing for us). While I was there, I was introduced to all of the great people she works with. It was while I was there that I found out that all of these people, Jenn's colleagues, who I have never met before in my life, came over to my house while I was in the hospital and helped Amy organize the house and move furniture to get it ready for the sale. As I said, I had never met these people before in my life and here they are, about 10 of them, coming over on their day off to help my family in our greatest time of need. It was also at this time that our friends Scott & Kelly took the time to come to our house (along with Paul & Deby Taylor) to help with the clean-up and packing. They did this while they were trying to raise a one year old daughter and one year old son respectively and yet they were all there taking the time to help my family. It is also during this time that our friends Karen & Blair Taylor came by with dinners so Amy would have one less thing on her mind while she was trying to deal with all of this.Another couple of examples:While I was at my sickest and awaiting my operation it got to the point where I could no longer take care of myself. I actually had to be watched constantly for my own safety. When it got to the point where it was impossible for someone from my family to be there my friend Paul would take the time from work and family to come over and just be with me. To watch me and to take care of me. You must understand the patience and caring it takes to do this while I was in the state I was in.Then there always has been and always will be my friend Kevin. He has always been the person to whom I look to for advice and guidance. He was there with me before the operation and he was there with me while I recovered. He was there in the hospital right after the operation joking with me, taking me for walks and reassuring me that I was supposed to look like Frankenstein's Monster and screw those who stared at my bruises and swelling. Yes Kevin, there is still a chance I may grow into the Hulk with the gamma radiation treatments. Thanks for lending me your purple jeans just in case.This is for them. For all of the people I have mentioned above and for all of the people I have yet to hear about. Thank-you. Thank-you for helping me when I could not help myself. Thank-you for everything you did for my family when I could not be there for them.

Okay, Not What I expected But...

2008-09-18T11:01:00.000-04:00

So yesterday I had my appointment with the Oncologist at the Pencer Brain Tumour Centre in the Princess Margaret Hospital to talk about my radiation treatments. Dr. Millar is a very nice lady and very thorough. They did all of the usual tests and checked me out to see how I was progressing and then she went over my MRI from September 5th again. Yes the stubborn little bugger the cyst has grown back and yes they are going to have to deal with it. Here is where it gets interesting.Dr. Millar asked what my Neurologist Dr. Bernstein had recommended as a course of action for dealing with the cyst. I told her that since he sent me right to her I had assumed that he planned on dealing with it through radiation. Now does everyone remember what happens when we ASS-U-ME? That’s right; I made an ass out of everyone but me.It seems that Dr. Millar was a little confused by this course of action since radiation generally has little effect on cysts. It’s too bad that the tumours themselves hadn’t grown back because those they can deal with. Dr. Millar informed me that she will contact Dr. Bernstein to go over the case with him and find out why he doesn’t want to operate again. I of course have my own theory about this. Have you ever tried to crack a nut twice? Things don’t generally go so well. Besides it really sucks. My vote was for trying the radiation.If in fact radiation is the way they decide to go, I will be setting up appointments next week to go down to PMH every day for 6 – 8 weeks Monday to Friday to get zapped. The thing about these treatments is that they may have no effect on shrinking the cysts and if they do, it could take up to 2 years for this to happen. Another bonus side effect is that because they are hitting the bean with these rays, it may in fact cause malignant tumours to grow in the future (Yeah!).In the mean time they have given me steroids to take on a daily basis to stop the swelling in my brain and to increase my beach muscle. I’m thinking of starting by ripping telephone books in half everyday for the next few weeks and then moving on to benching hybrid cars. I’ll be the guy at the beach with the huge upper body and the toothpick legs.

A Funny Thing Happened On The Way To The Forum....

2008-09-10T10:59:00.000-04:00

Well I have some more "Good News Bad News" this week. The good news is that I will be finished my radiation treatments sooner than expected. They were originally scheduled to start in December but they have been moved up and should be starting within the next two weeks. The bad news is the reason why they've been moved up.Last week I started to not feel myself again (as opposed to "feeling myself" which I must admit I did quite a bit of back in high school). Actually I started getting constant headaches, I was feeling tired all of the time again and I started to forget small things like walking away from the freezer and leaving the door open (small things). Anyway, I figured I had better get this checked out just in case. After everything I'd been through I now take the better safe than sorry attitude. I went to see my doctor on Thursday and let him know the scoop and he ordered an MRI at Credit Valley for me. I got a call Friday morning and they asked me to come in that afternoon.Once again I was strapped into my favorite machine and everything was fine for the first hour. Then they pulled me out just enough to inject me with the radioactive dye and it hit me like Oprah hits a buffet. I started waving my arms and telling them I was going to be sick so they ran over and unstrapped my head so I could sit up and get sick. They were nice enough to let me catch my breath for a while before strapping me back down and shoving me back into the giant tube. I managed to ride it out for another half hour so they could get their pictures and I left thinking "all of this for headaches that are probably being caused by the weather".Monday morning I got a call from my neurologist at Toronto Western and he told me that he would like to see me that afternoon. I went down with the MRI disk in hand feeling kind of bad that I was wasting everyone's time. Unfortunately it wasn't a waste of time at all (although I would have felt better if it had been). It turns out that what is left of the tumors are causing the cyst at the base of my brain to grown back and it is now roughly the size of a golf ball (still smaller than before). The thing that worried my neurologist is the fact that there was nothing there two months ago when I had my last MRI. What can I say; I never do anything half-assed.Well that's where I am at the moment. I should find out this week when the treatments start and then I'll be right as rain again. Thanks to everyone for the messages and calls. I'll keep you updated when I can after we take care of this stubborn little bugger.Cheers,Sean.

Another Update (Article Attached)

2008-08-11T10:57:00.000-04:00

I thought I’d write a quick update for those of you who asked. So far things are going pretty much as planned. I’m at home right now while I recover and get back to my version of normal. I know everyone keeps telling me to be patient with this whole “healing process” thing but boy does it ever seem like it’s taking forever. Don’t get me wrong; having the summer off is great but after a while it does seem to drag. As of now I am still waiting to see the Endocrinologist at the end of September so he can fix my thyroid, I then have to wait until October to see the Eye Specialist again, after that it’s back into the giant beer can for my MRI in November to see if the remaining pieces of tumors have grown and if so by how much. And finally of course my favorite (and I hope it’s one of yours) radiation treatments every day for a month! That means that I won’t be done until at least December. Oh well a clean bill of health would certainly be a nice Christmas present wouldn’t it?In the mean time there was an article in the Globe & Mail on August 6 written by my Neurosurgeon Dr. Mark Bernstein which I have attached below:A Neurosurgeon's Daily GrindIt's 1:03 p.m. when the resident starts to cut skin with my assistance. It's the second brain tumour operation of the day. The first was a benign tumour. We were able to help a young student and restore his opportunity for a future. The second patient is a nice 38-year-old mother of four, undeserving of what has befallen her. The resident's eyes wander to find the computer monitor showing the patient's MRI. "Yup, sure looks like it's going to be a bloody one, Dr. B.," she says. I nod. We went over the imaging at length before the operation and are well prepared. The patient has four units of blood ready to go and the anaesthetist has them in the room, stored in the same kind of cooler I use when I go fishing. We have talked to the anaesthetist about this possibility and she is ready. The operating room nurse and the scrub nurse are crackerjack.After the bone flap is removed with a high-speed air saw, the brain is exposed and we get a glimpse of the edge of the tumour. It looks like an overripe plum with the skin peeled off. We take a little piece with biting forceps to send to a pathologist, who will freeze it, slice it and look at it under a microscope while we're operating to give us an estimate of whether it is malignant or benign. The final pathology report will take about a week.The place we opened is the size of two grains of rice, and is weeping blood at a pretty good rate. We spend five minutes under the operating microscope with burning forceps to stop the bleeding.The operation continues bit by bit - every time we touch the tumour, we have to methodically stop the bleeding. If you don't keep up with the bleeding, you get too far behind and the patient will go into shock. At one point, we try to coagulate some vessels deep in a bloody hole with the aid of the microscope. All of a sudden, in the clean dryish place created at the end of our two suckers, which suck blood away, we see the burning forceps clamped around a decent-sized artery the size of a small pencil lead. We notice the artery is not going into the tumour but running beside the tumour into the surrounding brain. "I sure hope that isn't supplying anything important," I say nervously. This time the resident nods in agreement. The pathologist has informed us it's a malignant tumour so our job is to take out as much of it as we can, to take the pressure off the brain and make the radiation and chemotherapy work better. So we keep chipping away at the tumour with various tools; it's slow work because it's so bloody. At least once every 10 seconds, or maybe 10 times every second, the worry about what that blood vessel supplied permeates my brain like a dense fog, wrapping me up like a big, cold wet blanket. I look up at the clock; it's 3:27 p.m. Another hour goes by and we get as much tumour out as we can. Then we spend another half hour meticulously stopping any bleeding. Postoperative bleeding, after we've closed the patient's head, can produce a catastrophic stroke and an immediate and unceremonious return to the operating room. I am still worried about that blood vessel. My throat is dry and I have an unpleasant feeling. I wonder what the sour smell is and then realize it's me. This operation is being done with the patient asleep, so I can't tell if she has incurred a stroke from our taking that darned blood vessel. I will just have to wait. We are sewing up the skin and finally applying the head dressing at 5:16 p.m. It takes the anesthetist another 15 minutes to get the patient awake enough to take out the breathing tube."She isn't moving her right hand very well, Dr. B. Too bad, but it couldn't be helped," the resident mumbles. She looks at the floor while she speaks and her voice is low. Maybe if neither of us can hear it, it can't be true."She'll be okay. It was a long operation and a big tumour so there was a lot of brain manipulation. She'll perk up in a few hours." I try to sound encouraging while I say this. Under my breath I'm saying, "Oh shit."The drive home a few hours later is gloomy. The sunny evening seems dull. My dogs' greeting at the door doesn't seem quite as energetic as usual. They sense my fear. Even the 21-year-old single malt doesn't taste very good. Half an hour later I'm lying in the bathtub, completely submerged under the water, trying to disappear. I call the hospital at 11 p.m., before I hit the sack, and learn from the patient's nurse that she is still paralyzed in her right arm.I sleep fitfully and finally get out of bed at 4:30 a.m. to go down to the hospital to see her. She is wide awake and alert, and moving everything well - including her right hand. "Dodged another bullet," I think to myself. I wonder what's on the firing line today.

Good News & Bad News

2008-07-09T10:56:00.000-04:00

So it seems that with a skillful combination of wishful thinking and hearing only what I wanted to hear, I may have misunderstood the last diagnosis. I guess what the neurosurgeon really said was they "may have gotten it all". May being the operative word.This is what I found out on my recent visit to my oncologist (the lady who "may" turn my into the Hulk with gamma rays). As it turns out we are back to the original plan where they did in fact leave a small amount of the tumors in my brain (for memory purposes remember?). So now I will be going back to the oncologist at the Pencer Brain Tumor Centre in the Princess Margaret Hospital for radiation treatments in the near future.The treatments themselves won't last long (just a couple of minutes) but I get to go every day for about 20 days. It's not something I'm especially looking forward to but like I've said before, I've come this far, what the Hell? I really can't complain, there were a lot of people at the Centre who had it a lot worse than I do. I'm just happy to be with my family and I have the rare opportunity to spend the entire summer with my kids. But do you know what the best part of it is? I still fell better than I have in a VERY long time. So I might not feel that great for a little while but like I said; it could be worse.They also checked my vision and while my peripheral is not where it should be, they told me that it will continue to improve as time goes on. I've also still got to see and endocrinologist because it seems that my pituitary gland was damaged by one of the tumors. This means that I will need to go on "hormone replacements" so if I start to grow bumps where there shouldn't be any you may not hear from me for a while (that's the good news).

Yes I am A Rock Star...

2008-06-23T10:55:00.000-04:00

Either that or very luck; but I prefer Rock Star. I went for my follow-up with the specialist today and things went better than expected. The Doctor was even suprised at how well everything is going. He showed me my MRI from last Monday and he thinks they may have gotten everything durring the operation. I still have to see an oncologist but I may not need radiation (boo hoo). Now I really feel great. It's as if there has been a big weight lifted off my shoulders (besides the tumors).What did I tell you? There's nothing to it.Thanks again for all of the kind words and support. You are all great friends and I thank God for that every day.

MRI's Are Fun And Easy!

2008-06-20T10:53:00.000-04:00

Well I went for my latest MRI on Monday and I thought it would be a piece of cake. The whole time I was thinking "How hard can an MRI be? All I have to do is lay there and maybe get a little shut-eye while the machine does the work." I got a little shut-eye alright.As soon as I got there I had to fill out a 2 page questionaire asking me everything from family history to allergies. The one question that caught my eye was whether or not I had any tatoos. Having a couple I asked the nurse why this was important and it turns out that sometimes they can start to heat up durring the scanning so if I started to feel any burning sensations I was to please let them know. It's funny that this was the question that caught my eye because nothing happened. In fact it was another question that should have gotten my attention.You know when you're filling out those long questionaires and you start to go into auto-pilot? You start going down the list at speed checking "NO" to everything? That's what I did. One of the questions that I maybe shoul've paid a little more attention to was "Did you have any reaction to the radioactive dye durring your last MRI?" Like I said I was thinking:"Nah, piece of cake". Well it turns out I did have a reaction the last time but because the tumors affected my memory I totally forgot. Guess how fast those sweet memories came flooding back? So there I was with my head strapped down and an I.V. of radioactive dye hooked up to my arm while my body was dunked sideways into this giant beer can and I started feeling a little woosey. Doesn't get much more relaxing than that. I will tell you one thing though; there was no way I was going to stop and do it all over again so I kept my eyes closed, breathed deeply and took it for the 25 minutes it took for them to finish the fashion shoot with my bean. Needless to say I felt like a great big bag of "something" for the rest of the day but it's done.I go back to see the speacialist this monday to get the results and then I start treatment on what's left of the stubborn little buggers. I'm not looking forward to it but hey, I've come this far why not go whole hog? Seriously though, I know it will be over in no time and then I can get back to what is considered normal for me. On the bright side of things, how many people get the summer off? Suckers!

Another quick update:

2008-05-22T10:50:00.000-04:00

I go for my next MRI on June 16 and they will determine from that what exactly is left for the radiation treatments (I've already done the Hulk jokes and I know it's not easy being green). From there I go to the eye specialist on June 27th so they can see what damage has been done to my vision (you can all start calling me Col. Steve Austin when I get my new bionic eye). And finally I go to the Endocrinologist on the 29th for them to check out the pituitary gland that was damaged by one of the tumors (I can't think of a joke for this one - although I am open to suggestions).Thanks again to everyone for all of they kind words and warm wishes. I am still feeling great and I know everything is working out.Keep the faith,Sean

You can't get rid of me that easily!

2008-04-15T11:04:00.000-04:00

I just wanted to reach out to everyone who sent me the kind thoughts and warm wishes. It really means a lot. I also wanted to let everyone know that I'm doing great and I really fell so much better than how I did before the ice cream scoop. For those of you who are interested I have attached the full story below;About six months ago I started losing vision in my right eye and I could not stay awake no matter how hard I tried. By the end of February I had completely lost vision in my one eye and I was literally sleeping 23 hours a day. I even fell asleep in the doctor's office during a check-up. As an added bonus I had no short-term memory whatsoever. I was repeating myself and asking the same questions over and over. I was even starting to forget my family. This is when they figured there was definitely something wrong and an MRI was ordered. It turned out that I had two brain tumors. One pressing against the optic nerve and the other pressing against the pituitary gland (affecting everything from my thyroid to my sleep patterns). Thankfully an appointment was made for surgery on that Thursday and I was in for my operation the following Monday (April Fool's Day believe it or not).The operation was done at Toronto Western by Dr. Bernstein and a team of six others. During the pre-op however they discovered that there was also a cyst at the base of the skull which was also taking up room. It was decided that two teams would work at the same time (one on the tumors and one on the cyst) which cut the operation from 12 - 15 hours to 7 and a half. To make a long story short (I know - too late), after 4 hours they finally found the nodules to the tumors which were both the size of baseballs and they pulled them out through openings the size of green peas between an optic nerve and a main artery while draining the cyst at the same time.All of this was done by 7:00 p.m. and by 8:30 p.m. I was calling home to let them know I was feeling okay and not to worry. The next morning I was up having breakfast and doing my crossword puzzle as usual. Today I feel great. I feels as if I've had a tension headache for the past six months and now it's just gone. I am clear headed, I have all of the vision back in my right eye and although there is still a memory gap during the couple of months leading up to the operation, everything seems to be fine now (no more excuses). I am happy. Amy and the rest of the family have been unbelievable. It has brought a whole new strength and bond that will never be broken. I honestly think that I have had it the easiest out of everyone.Right now the best part of every day is just walking the kids the the bus stop in the morning and giving them a big hug and kiss before they go. Every day has been a great day and they are only going to get better.I hope I haven't taken up too much of you time but after all the kind words and warm wishes I wanted to give everyone a personal thank-you and update.