Hello my friends, guess who is back and still fighting!!!?? Yep, just me, the one who refuses to let this thing wrap its ugly arms around me as it attempts to squeeze the life out of me. I apologize if I feel a little "smug" or "big-headed" right now but I feel deep down inside that the score is 2-1 for my team against the C-Team and I couldn't be more pleased!!!
First of all, I want to thank each and every one of you for your unending support throughout this path of mine. I know.....truly know, that without all of your thoughts, well-wishes and prayers, that this fight would be so much more difficult to battle every day. I will forever hold you close to my heart.
Ok, lets get into the brains of this thing!!
Finally got my "infected hangnail" cleared up and given the ok to proceed with surgery. The hangnail seemed so trivial but after l listened to my surgeon explain the higher infection risk factor already involved with having surgery a second time in the same area.....I was ok waiting another 10 days until this active infection in my finger went away!!
So my surgery day officially began at 6am with the usual paperwork associated with being admitted to hospital. Dad and I were even there 20 minutes early!!! After that, I was whisked away to the second floor for surgery prep where I saddled up onto the bed in preparation for the medical ride of a lifetime! From there it was off to the MRI suite for my pre-surgery MRI (just to make sure this all wasn't a joke or something??) lol
Now I am being wheeled down corridors that are getting eerily colder as we near the operating room. Once in the O.R. I am greeted by a host of new faces who are going to be involved with my operation. I believe in total there were anywhere from 10-12 people in there at any given time, all of them with smiles and idle conversation to share with me while they went about their work strapping, clamping, poking my body for game time.
Unlike my first surgery where I was flat on my back with my head in its natural position, this time around, I was placed on my left side and then my head was physically clamped sideways (still with poke holes to prove it) to prevent any movement. For this part as well as the initial cutting of the skin, the Doctors took my level of consciousness down to nil and then brought me back up minutes later to my awake state. Ok, be forewarned, here is where it gets a little graphic for those of you who may get squeamish. (is that in the dictionary?)
The first sound and sensation I hear and feel is that of a cutting tool being used to remove a larger portion of my skull for access. There was no pain involved, although I MAY have winced a couple of times as the blade bound up and had to be removed and started again. Anyone who has used either a hand or power saw should be able to relate....kinda. The next thing I felt was the skull being chipped out tenderly to expose the the "goods". The anasteciologists (x2) were right in front of me the whole time, asking my pain level etc so that they could instantly adjust the medication levels to make me more comfortable. It was they who graciously took pictures for me too. From this point, they began to remove brain tissue, both tumorous and dead non-tumorous (the downside result of radiation treatment) and as the surgeon neared the outside perimeter of the mass, is when he asked for my input regarding things such as :can you raise your left leg, turn your ankle, bend your knee etc. These physical activities were a result of my tumour being located on the right side "Motor Strip" portion of my brain controlling the left side of my body. I think he got my bank card PIN number too because since Wednesday, my account has been dwindling!!!
I guess in this day and age its all about "cost-down" since they now use rivets and strapping to secure the skull back to its original position in the head. I guess I don't need to worry about anyone trying to thieve them as they do with copper wire etc now!! lol
The surgery took 6 hours overall and I came out of it with quite a large "U" shaped incision containing 32 stitches to be removed in 10 days by my family Doc.
Just as happened with my first brain surgery, as soon as I was in Recovery for the 24 watch period, I wanted food and I wanted it NOW!! I almost felt embarrassed for feeling so good as I scanned the rest of the room and seen others who had just undergone the same or similair surgery and were not feeling nearly as spry as I was. That being said, of course I was the thorn in the Nurse's side until they finally kicked me out into the general population. On Thursday, they put me into a semi-private room with a 91 year old Italian gentleman named "Ted" for short. Ted was a full blown Italian from the the Chatham/Windsor area. He has been in and out of hospitals for the past couple of years and according to his son, has not spent more than a month at home before landing up in hospital again. His conditions were alot to do with just old age I think. So from then until I departed, it was the "Ed and Ted" show. For him being 91, he was still fairly sharp and we had some good conversations, with me sitting on the edge of his bed, about the old country, the war etc. How can you not oblidge when a 91 year old man is patting the mattress as you walk by and says "EDDIE, please sit for 2 minutes here." (in his very Italian accent.) Ted will be one of those memories that will be etched into my mind forever, just knowing that I made an old man smile and actually convinced him to get his butt out of that bed and walk to the chair (with qualified staff at hand of course!!)
EVERYTHING HAPPENS FOR A REASON
So by Friday August 29 2008, I was ready to get out of that hospital. Of course prior to departing I had to see a few different specialists ranging from Occupational Therapists to Physiotherapists to a Social Worker. On the physical side of things, I am told that an "off the shelf" AFO (ankle-foot orthotic) will not work (did try one weeks ago and no, didn't work) and that I will require a custom-fit orthotic brace to allow me to walk "somewhat normal" ....at least to the extent that it will help in forcing my foot not to drag along the floor and also to force my left foot to point forward as opposed to its current position of wanting to turn inwardly. I may dance again one day! (now thats funny)
I will post the surgery pictures here also but will leave out the actual brain pictures. If your morbid fascination gets the better of you and you'd like to see it, feel free to just ask, I did!!
I am hoping to spend at least the long weekend having some down time. As headstrong as I am, I also know the importance of the healing process and how that will help me when its time to step up to this again. First and foremost is recovery, and then the trip to "you know where" planning begins!!!!! Nothing is going to stand in our way now.
I will be returning to the LRCC (cancer clinic) in a few weeks time to discuss our options going forward. I will certainly update you all on the outcome of that as things get laid on the table.
Thank you all again....for your support and love
With love
Ed
Saturday, August 30, 2008
Saturday, August 23, 2008
Second Surgery Update
Hello from me, sitting outside on my deck, at 3:30am on an early Saturday morning (or late Friday night if you are under 40 years old!! ......been up for over 2 hours. My sleeping pattern seems to be getting worse instead of better now that I've been off the chemotherapy for about a month!! I am sure the announcement of the return of the tumour and my upcoming second surgery are not helping either though right?
So surgery.....its now been officially rescheduled for this coming Wednesday August 27th at University Hospital in London. My "infected hangnail" is better and I think I will have to live in a bubble until Wednesday so as to not cut, scratch or otherwise maim myself before surgery! ;)
The thought of having this second surgery "awake" actually does not scare me. What scares me is knowing that radiation and chemotherapy did not work. So at this point, my only real "tested" option, is to go through with this awake surgery, which will allow the surgeon to hopefully remove more tumour mass closer to the edge of it. After researching this, I've come to see that it is not as uncommon a procedure as we'd all think. It sounds very invasive but hey, so is this damned cancer. Fight fire with fire I say!!!! The doctors have already forewarned that at this point, we are all about "trying to maintain quality of life". Simply put, we've gone through the normal steps of trying to conquer this thing but its gonna be like the Everyready Bunny.....going and going and going.
I am not ever giving up as long as I have something to live for. And at this time, I have EVERYTHING to live for. In an otherwise grim situation, I can't tell you the joy it gives me to feel my family getting closer to each other and remembering that no one can replace your family. I love them all so dearly....in my own quirky way I'm sure I'll hear them say!!
As for work and personal friends...........WOW. I truly truly truly thought I lived a quiet life and pretty much kept to myself but after experiencing the outpouring of kindness since all this began, I've begun to think that I guess I must not be too bad of a guy and have been able to leave an impression (whether it be a good or not so good one!) on some folks. Its shown me who will stick with you through thick and thin, who are fairweather friends and who actually truly cared when I didn't realize they did. I guess its a life event that has opened my eyes to the stuff that matters, and to not sweat the small stuff as they say.
At this point I can accept what the future may hold.....if the next time the tumour re-surfaces and decides to take a left or right turn in my brain, I could be facing blindness and or paralyzation. I'm aware of that and ready for whatever they want to throw my way. On the down side of all that, modern medicine also says that there are only so many times you can keep removing tumour mass before you start to further invade good brain mass. Is that why I keep getting called "pea-brain"?? lol
My chin is up, my nerves are still of steel (99%) and I'm ready for them to give me some more time on this earth after Wednesday. So if I can ask you to do anything......say some words to your higher power, cross your fingers and do NOT take my doctor out for drinks the night before my surgery!!!!! ;)
Love ya all!
Ed
So surgery.....its now been officially rescheduled for this coming Wednesday August 27th at University Hospital in London. My "infected hangnail" is better and I think I will have to live in a bubble until Wednesday so as to not cut, scratch or otherwise maim myself before surgery! ;)
The thought of having this second surgery "awake" actually does not scare me. What scares me is knowing that radiation and chemotherapy did not work. So at this point, my only real "tested" option, is to go through with this awake surgery, which will allow the surgeon to hopefully remove more tumour mass closer to the edge of it. After researching this, I've come to see that it is not as uncommon a procedure as we'd all think. It sounds very invasive but hey, so is this damned cancer. Fight fire with fire I say!!!! The doctors have already forewarned that at this point, we are all about "trying to maintain quality of life". Simply put, we've gone through the normal steps of trying to conquer this thing but its gonna be like the Everyready Bunny.....going and going and going.
I am not ever giving up as long as I have something to live for. And at this time, I have EVERYTHING to live for. In an otherwise grim situation, I can't tell you the joy it gives me to feel my family getting closer to each other and remembering that no one can replace your family. I love them all so dearly....in my own quirky way I'm sure I'll hear them say!!
As for work and personal friends...........WOW. I truly truly truly thought I lived a quiet life and pretty much kept to myself but after experiencing the outpouring of kindness since all this began, I've begun to think that I guess I must not be too bad of a guy and have been able to leave an impression (whether it be a good or not so good one!) on some folks. Its shown me who will stick with you through thick and thin, who are fairweather friends and who actually truly cared when I didn't realize they did. I guess its a life event that has opened my eyes to the stuff that matters, and to not sweat the small stuff as they say.
At this point I can accept what the future may hold.....if the next time the tumour re-surfaces and decides to take a left or right turn in my brain, I could be facing blindness and or paralyzation. I'm aware of that and ready for whatever they want to throw my way. On the down side of all that, modern medicine also says that there are only so many times you can keep removing tumour mass before you start to further invade good brain mass. Is that why I keep getting called "pea-brain"?? lol
My chin is up, my nerves are still of steel (99%) and I'm ready for them to give me some more time on this earth after Wednesday. So if I can ask you to do anything......say some words to your higher power, cross your fingers and do NOT take my doctor out for drinks the night before my surgery!!!!! ;)
Love ya all!
Ed
Monday, August 18, 2008
August 18/2008 Update
Well, so much for having surgery today! It was cancelled at the last minute (as I was already on the bed, IV in hand and all) due to the fact that I have an infection in my finger (undoubtedly caused by a hangnail).
Now before you all laugh, hear me out!! According to my surgeon, there is already a higher risk of infection doing this second operation because we are utilizing the original access site to the brain. Adding a secondary infection to the mix is just too risky. After hearing that, I didn't feel so foolish but still......
So they have given me some meds to counter the infection and if all clears up by the end of this week, we will re-schedule for next week. Talk about the emotional roller coaster going on for me and those close to me! Uggh!!
In the end, it is for the best and as soon as I know more details about a revised surgery date, I will pass it along.
Ed
Now before you all laugh, hear me out!! According to my surgeon, there is already a higher risk of infection doing this second operation because we are utilizing the original access site to the brain. Adding a secondary infection to the mix is just too risky. After hearing that, I didn't feel so foolish but still......
So they have given me some meds to counter the infection and if all clears up by the end of this week, we will re-schedule for next week. Talk about the emotional roller coaster going on for me and those close to me! Uggh!!
In the end, it is for the best and as soon as I know more details about a revised surgery date, I will pass it along.
Ed
Friday, August 15, 2008
Second Surgery Info
Hello :)
Well I am officially going to have someone (qualified at least) pick my brain this coming Monday August 18/2008. I am scheduled for surgery at 1:00pm that day (give or take an hour or so depending on how the first case of the day goes). I am second in line for surgery so I'll let Doctor Megasy warm up on him/her ;)
The procedure as I said before will be an "awake craniotomy" and will take between 4 and 6 hours to complete. I will be taken through various stages of consciousness throughout the procedure from almost unconscious during the initial opening of my head to fully conscious while the doctor asks me numerous questions and gets me to perform various muscle functions. Post operative will be pretty much the same as last time....1 to 2 hours in recovery and then to the "mini-ICU" for 24 hour continuous watch until it is safe to move me to a normal semi-private room.
The operation will take place on the second floor of the University campus on Windemere Road. If you're looking how to get there, go here.........http://www.lhsc.on.ca
I was told that visiting hours may be different than the normal 4pm to 8pm so it may be advisable to call in advance. Don't forget....the price of admission is a large double double coffee available in the front lobby! heh heh KIDDING! Wish me luck and its going to be a busy weekend now but I will still do my best to get back to you if you have any questions etc.
Well I am officially going to have someone (qualified at least) pick my brain this coming Monday August 18/2008. I am scheduled for surgery at 1:00pm that day (give or take an hour or so depending on how the first case of the day goes). I am second in line for surgery so I'll let Doctor Megasy warm up on him/her ;)
The procedure as I said before will be an "awake craniotomy" and will take between 4 and 6 hours to complete. I will be taken through various stages of consciousness throughout the procedure from almost unconscious during the initial opening of my head to fully conscious while the doctor asks me numerous questions and gets me to perform various muscle functions. Post operative will be pretty much the same as last time....1 to 2 hours in recovery and then to the "mini-ICU" for 24 hour continuous watch until it is safe to move me to a normal semi-private room.
The operation will take place on the second floor of the University campus on Windemere Road. If you're looking how to get there, go here.........http://www.lhsc.on.ca
I was told that visiting hours may be different than the normal 4pm to 8pm so it may be advisable to call in advance. Don't forget....the price of admission is a large double double coffee available in the front lobby! heh heh KIDDING! Wish me luck and its going to be a busy weekend now but I will still do my best to get back to you if you have any questions etc.
Wednesday, August 13, 2008
EYES WIDE OPEN August 13/2008
Dear All:
We went for my second surgery consultation today in London and I have decided to undergo another brain tumour surgery in approximately 2 weeks.
Really, this is the only viable option right now but with a twist. I have opted to undergo the surgery while I am awake. This will hopefully allow for more of the tumour to be removed as opposed to being "put under". Being awake will allow the surgeon to probe areas closer to the outside of the tumour to more safely determine if that area of brain tissue can be removed without causing such things as paralysis etc. Obviously any surgery of this type has its inherent risks but if I choose not to go forth and push the envelope, I may as well pack my bags now right!!
I will be confirming my participation with the Doctor today and then the process begins. I will update you all as I know more details.
My dearest Beth and Heather.......keep the fight going girls, we are all each others rocks remember!
Still looking to purchase a used golf cart and/or 4 wheeled scooter ( with a heater and windshield wipers if this crappy weather keeps up! lol) so if anyone knows of one available anywhere, please contact me.
To everyone who is supporting the 3 of us throughout this miserable trip......I thank you from the bottom of my heart.
Ok, now I will sit here and wait for the birds to at least wake up!
Until next time....
Love,
Ed
We went for my second surgery consultation today in London and I have decided to undergo another brain tumour surgery in approximately 2 weeks.
Really, this is the only viable option right now but with a twist. I have opted to undergo the surgery while I am awake. This will hopefully allow for more of the tumour to be removed as opposed to being "put under". Being awake will allow the surgeon to probe areas closer to the outside of the tumour to more safely determine if that area of brain tissue can be removed without causing such things as paralysis etc. Obviously any surgery of this type has its inherent risks but if I choose not to go forth and push the envelope, I may as well pack my bags now right!!
I will be confirming my participation with the Doctor today and then the process begins. I will update you all as I know more details.
My dearest Beth and Heather.......keep the fight going girls, we are all each others rocks remember!
Still looking to purchase a used golf cart and/or 4 wheeled scooter ( with a heater and windshield wipers if this crappy weather keeps up! lol) so if anyone knows of one available anywhere, please contact me.
To everyone who is supporting the 3 of us throughout this miserable trip......I thank you from the bottom of my heart.
Ok, now I will sit here and wait for the birds to at least wake up!
Until next time....
Love,
Ed
Thursday, August 7, 2008
August 7 2008
Hello everyone:
Ok, I've been bugged enough now (all in good spirit) to write another blog entry. Along with that, I also have some more news to share. On Friday August 1st, I got the results of my latest MRI scan at my scheduled Cancer Clinic appointment. Unfortunately, the results were disappointing. The chemotherapy I had been undergoing for the last 3 months has has zero effect on controlling or reducing the size of the brain tumor. The tumor and brain tissue swelling has continued to grow to the point of requiring more surgery. To be honest, I had a gut feeling the tumor was still growing but not at the agressive speed my Neurologist informed me of.
So the next step is to prepare for surgery in the next few weeks. Tuesday August 12th, I will see a Dr. Megasy at London's University Hospital for my initial consultation. I have requested that the surgery be done closer to home rather than in Hamilton this time simply for travel convenience for all involved. I have faith that Dr. Megasy is equally as qualified as the surgeon in Hamilton.
Until surgery, my anti-seizure and brain swelling meds have been both been at least doubled to provide me some relief (back to my daily diet of pills, pills and more pills!!)
On a positive note, I now have a living angel who has been sent to me. Lori has helped me over the past while in so many ways I would not even know where to begin the list.
We are still planning the Disney trip, even though there has been this latest setback. If it is the very last thing I see on this earth, I WILL get Faith there and know that we will have memories to cherish forever. Once again, I cannot thank my Cami, Military and everyday families for opening your hearts to make my little girl's dream vacation come true.
On thr business side of things......I am looking to purchase a good used electric 4-wheeled golf cart and /or scooter to help me get around. If anyone knows of any good deals, please contact me. My walking is quite limited and clumsy. ( I have the cuts, scrapes and bruises to prove it!) I have been told to save any gov't assisted funding for a wheelchair, which after discussing with my Occupational Therapist, makes alot of sense. The cart will just make "life on the farm" that much easier for me because I expend the majority of my energy just trying to get from A to B. And if you know me at all, you know that I am not one to sit still and relax too often.
On a final note, I guess I never know when my last "post" will be so I just want each and every one of you to know that you must have touched my life in one way or another if you are reading this. And for that, I thank you and now know what that thing called love is made out of, on so many different levels.
Peace,
me
Ok, I've been bugged enough now (all in good spirit) to write another blog entry. Along with that, I also have some more news to share. On Friday August 1st, I got the results of my latest MRI scan at my scheduled Cancer Clinic appointment. Unfortunately, the results were disappointing. The chemotherapy I had been undergoing for the last 3 months has has zero effect on controlling or reducing the size of the brain tumor. The tumor and brain tissue swelling has continued to grow to the point of requiring more surgery. To be honest, I had a gut feeling the tumor was still growing but not at the agressive speed my Neurologist informed me of.
So the next step is to prepare for surgery in the next few weeks. Tuesday August 12th, I will see a Dr. Megasy at London's University Hospital for my initial consultation. I have requested that the surgery be done closer to home rather than in Hamilton this time simply for travel convenience for all involved. I have faith that Dr. Megasy is equally as qualified as the surgeon in Hamilton.
Until surgery, my anti-seizure and brain swelling meds have been both been at least doubled to provide me some relief (back to my daily diet of pills, pills and more pills!!)
On a positive note, I now have a living angel who has been sent to me. Lori has helped me over the past while in so many ways I would not even know where to begin the list.
We are still planning the Disney trip, even though there has been this latest setback. If it is the very last thing I see on this earth, I WILL get Faith there and know that we will have memories to cherish forever. Once again, I cannot thank my Cami, Military and everyday families for opening your hearts to make my little girl's dream vacation come true.
On thr business side of things......I am looking to purchase a good used electric 4-wheeled golf cart and /or scooter to help me get around. If anyone knows of any good deals, please contact me. My walking is quite limited and clumsy. ( I have the cuts, scrapes and bruises to prove it!) I have been told to save any gov't assisted funding for a wheelchair, which after discussing with my Occupational Therapist, makes alot of sense. The cart will just make "life on the farm" that much easier for me because I expend the majority of my energy just trying to get from A to B. And if you know me at all, you know that I am not one to sit still and relax too often.
On a final note, I guess I never know when my last "post" will be so I just want each and every one of you to know that you must have touched my life in one way or another if you are reading this. And for that, I thank you and now know what that thing called love is made out of, on so many different levels.
Peace,
me
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