Need Your TV Mounted?

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?

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……..

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…

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...

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....

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...

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

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

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

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.