Dates Dates Dates

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.

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

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............

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

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...

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....

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)

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

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...

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!

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:

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!

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.