Just a quick update of things that have transpired since my last post. Got a call last week from the Cancer Clinic telling me my blood platelet count was extremely low. The normal range is 150 - 400 and mine is a whopping 37! So we did more bloodwork yesterday and will see what the results show in a couple of days. If it drops further, I will have to start getting blood transfusions.
It all makes sense now why I am so totally fatigued, bleed and bruise so easy.I have other symptoms too but won't bore you with them.
My sister Angela is still in the hospital, out of ICU now, but still has a long road ahead of her....again. This was the result of a fall last week where she was found unconscious my myself and Shirley at her apt. She has a fractured skull and has been having numerous seizures since. I will keep you all updated as to the progress of both of us in the coming weeks.
Please keep my family in your thoughts and prayers. Its been a helluva month!!!
Positive thoughts to my friend and former co-worker, Barry V. and family as he/they battle the Big C at this time also.
Probably against my own better judgement, I have begun volunteering again for Wish Upon a Song 2 fundraising again this year. One of the organizations we are raising funds for is the Brain Tumour Foundation ....so how could I not be involved right:)
Visit my Facebook page or contact me for more details.
Wishing you all.......the best!
Ed
Tuesday, July 24, 2012
Wednesday, July 4, 2012
July 4/12 The Unwelcomed Visitor
Well I've pretty much healed from my June surgery. I'd say the outcome was semi-successful. Had a setback about a week after surgery with excessive drainage coming from the site. So off we went to see the Plastic Surgeon again and he said it was NOT normal. Is anything in my life of late normal though? lol So now I have to receive daily Homecare to drain and dress the site until it heals. The Plastics Doc feels the cause of all the fluid may be due to the other Doc (Neuro) not getting all the infected bone / tissue out. Only time will tell I guess.
As for this post's title.......The same day as surgery, I found out the results of my latest MRI. I have another tumour and associated brain swelling etc that goes with it. Since I had only been off my previous chemo (Temodal) for around 80 days and the re-growth was rapid, my Oncologist started my on a different chemo cocktail ( Lomustine) This regimen consists of only taking one dose of pills for one day every six weeks. Compared to the old chemo, which I thought I tolerated pretty well, this one is giving me a couple of irritating side effects. Upset stomach, constipation, fatigue etc.
The major downside of this current tumour is that it has reduced more of my left side function. My left arm and leg are weaker to the point that my arm has stroke-like symptoms of it just "dangling" and my walking is further impaired because of reduced brain signal telling my leg what to do. My balance is not so great either and I've taken a few spills. Only one required stitches though!
I've had about 4-5 focal seizures since surgery....undoubtedly due to the brain swelling causing excessive pressure. I am on a steroid to help reduce the swelling but I personally feel the damage is already done with respect to my leg and arm. Been down this road before and seen the results. The steroid causes weight gain and sleeplessness. Been trying to combat the sleeplessness with a sleeping pill. Some nights it works, others (like tonight) the steroid side effects win over.
In case any of you are curious as to what happens with a focal seizure, for me, my left side is rendered completely useless for about 15 minutes. Unable to lift my arm past my waist and I get a left side facial numbness during the same time frame. My most recent episode was last night around 10pm. I've learned to deal with them but have the fear of losing more and more left side function with each occurrence.
I won't lie and say everything is roses right now. Throughout this whole 4+ year battle, this is undoubtedly my weakest moment, both mentally and physically. The fight is still on 100% but I am wearing thin some days.
I will be following up with the Cancer Clinic on August 7th and will undoubtedly start Round Two of this new chemo at that time. Not sure of next MRI date. Normally every 3 months so maybe September?
As always, huge thanks to Lori, my family and friends who have stood beside me over the years of fighting this thing. You will all forever hold a big spot in my heart :)
I will attempt to attach a shot of my last MRI showing the tumour in the left side of picture, and the associated brain swelling in the right picture.
Much love to all
xx
Ed
As for this post's title.......The same day as surgery, I found out the results of my latest MRI. I have another tumour and associated brain swelling etc that goes with it. Since I had only been off my previous chemo (Temodal) for around 80 days and the re-growth was rapid, my Oncologist started my on a different chemo cocktail ( Lomustine) This regimen consists of only taking one dose of pills for one day every six weeks. Compared to the old chemo, which I thought I tolerated pretty well, this one is giving me a couple of irritating side effects. Upset stomach, constipation, fatigue etc.
The major downside of this current tumour is that it has reduced more of my left side function. My left arm and leg are weaker to the point that my arm has stroke-like symptoms of it just "dangling" and my walking is further impaired because of reduced brain signal telling my leg what to do. My balance is not so great either and I've taken a few spills. Only one required stitches though!
I've had about 4-5 focal seizures since surgery....undoubtedly due to the brain swelling causing excessive pressure. I am on a steroid to help reduce the swelling but I personally feel the damage is already done with respect to my leg and arm. Been down this road before and seen the results. The steroid causes weight gain and sleeplessness. Been trying to combat the sleeplessness with a sleeping pill. Some nights it works, others (like tonight) the steroid side effects win over.
In case any of you are curious as to what happens with a focal seizure, for me, my left side is rendered completely useless for about 15 minutes. Unable to lift my arm past my waist and I get a left side facial numbness during the same time frame. My most recent episode was last night around 10pm. I've learned to deal with them but have the fear of losing more and more left side function with each occurrence.
I won't lie and say everything is roses right now. Throughout this whole 4+ year battle, this is undoubtedly my weakest moment, both mentally and physically. The fight is still on 100% but I am wearing thin some days.
I will be following up with the Cancer Clinic on August 7th and will undoubtedly start Round Two of this new chemo at that time. Not sure of next MRI date. Normally every 3 months so maybe September?
As always, huge thanks to Lori, my family and friends who have stood beside me over the years of fighting this thing. You will all forever hold a big spot in my heart :)
I will attempt to attach a shot of my last MRI showing the tumour in the left side of picture, and the associated brain swelling in the right picture.
Much love to all
xx
Saturday, June 2, 2012
June 2/2012
Its been a while since my last post so I will try to update you all with as much as I remember from the past few months.
After 341 consecutive days of oral chemotherapy, I was able to stop taking it on March 14th because the Temodal had been doing its job and had reduced the size of all 3 tumours enough to allow me to gain some strength back with my immune system and prepare for my up-coming surgery. While this is of course good news, being off the chemo also means there is nothing fighting the tumours if they've decided to grow back. I've been dealing with constant headaches and fatigue lately put I guess I can't put the cart before the horse and assume that these symptoms are tumour related. I have a scheduled MRI this Monday, June 4th and will hopefully know the results prior to my surgery on June 11.
The June surgery is to remove infected bone and flesh from the open wound I have had on my head since my last craniotomy almost 4 years ago. Over the years, the hole has gradually became bigger (about the size of a quarter now) and there are previous surgery pins and dead skull bone showing. Even though I receive Home Care to clean the area, as well as clean it myself and keep it covered 24/7, I have been on antibiotics for months to at least control the open site from infections etc.
The surgery will be a 2 step procedure....first my neurosurgeon will go in and remove all of the dead/infected area (which we do not know the extent of until he opens me up). After that, the Plastic Surgeon will be taking a skin graft from my inner thigh to use for wound closure since the existing skin on my head is not suitable since I have had so much radiation and disturbances in that area. From what I was told, he will make an incision on the back of my head where my once upon a time hairline was, push that skin forward to cover the hole, and then use the grafted skin to make up the difference where he made the incision.
I was told this should only be an over night hospital stay so barring any complications, I should be home the next day. The Plastics guy has forewarned me that this may be unsuccessful if the graft isn't accepted by my body and if so, I will have to have another, more complicated surgery where they would take a deeper graft from my leg, along with its own blood supply (vein) and slap that on my head. Just because of the location of the graft and incision, I feel some sleepless nights ahead after surgery.
After continually beating my expected prognosis, and having to watch friends and family members of friends lose he fight to cancer, it is a small amount of discomfort that I will take in stride. My thoughts and prayers go out to all of my friends fighting the fight, as well as to those who have recently lost loved ones.
PS: Cancer Sux!
Ed
After 341 consecutive days of oral chemotherapy, I was able to stop taking it on March 14th because the Temodal had been doing its job and had reduced the size of all 3 tumours enough to allow me to gain some strength back with my immune system and prepare for my up-coming surgery. While this is of course good news, being off the chemo also means there is nothing fighting the tumours if they've decided to grow back. I've been dealing with constant headaches and fatigue lately put I guess I can't put the cart before the horse and assume that these symptoms are tumour related. I have a scheduled MRI this Monday, June 4th and will hopefully know the results prior to my surgery on June 11.
The June surgery is to remove infected bone and flesh from the open wound I have had on my head since my last craniotomy almost 4 years ago. Over the years, the hole has gradually became bigger (about the size of a quarter now) and there are previous surgery pins and dead skull bone showing. Even though I receive Home Care to clean the area, as well as clean it myself and keep it covered 24/7, I have been on antibiotics for months to at least control the open site from infections etc.
The surgery will be a 2 step procedure....first my neurosurgeon will go in and remove all of the dead/infected area (which we do not know the extent of until he opens me up). After that, the Plastic Surgeon will be taking a skin graft from my inner thigh to use for wound closure since the existing skin on my head is not suitable since I have had so much radiation and disturbances in that area. From what I was told, he will make an incision on the back of my head where my once upon a time hairline was, push that skin forward to cover the hole, and then use the grafted skin to make up the difference where he made the incision.
I was told this should only be an over night hospital stay so barring any complications, I should be home the next day. The Plastics guy has forewarned me that this may be unsuccessful if the graft isn't accepted by my body and if so, I will have to have another, more complicated surgery where they would take a deeper graft from my leg, along with its own blood supply (vein) and slap that on my head. Just because of the location of the graft and incision, I feel some sleepless nights ahead after surgery.
After continually beating my expected prognosis, and having to watch friends and family members of friends lose he fight to cancer, it is a small amount of discomfort that I will take in stride. My thoughts and prayers go out to all of my friends fighting the fight, as well as to those who have recently lost loved ones.
PS: Cancer Sux!
Ed
Monday, March 12, 2012
March 12 2012
Had my MRI results this morning..........GREAT news! The newest and smallest tumour of the 3 that were present is no longer visible on the scan. The other two have also shrunk quite a bit too. That being said, my Oncologist has deemed it ok to take me off chemotherapy for the time being...at least until my next MRI in three months. So after 340 days of being on chemo every day, my body finally gets to take a rest!!
Along with that, we will now arrange a surgery with the Plastic Surgeon as well as the Neuro Surgeon to finally, after 3 years, hopefully close up the 10cm hole in my head. The process will involve removing dead and/or infected bone, replacing with undoubtedly a synthetic material and then the Plastic Surgeon will either attempt to close the hole using the existing skin or possibly a skin graph. Not sure of when this will happen but the sooner the better since I am prone to infection all the time with this hole.
A great weight lifted off my shoulders this morning. Hopefully I can regain some energy with the chemo out of my body for a while.
Realistically, I will never be cured of this type of cancer due to its nature but I have bought myself more time with the chemo treatments to be able to spend quality time with those whom are close to me.
Thanks to you all for the amazing support you have given me over the past few years. It has made this bumpy road much more tolerable. And when the cancer does decide to grow again, I will be there with 2 fists up, ready to take it on!!
Sincerely,
Ed
Along with that, we will now arrange a surgery with the Plastic Surgeon as well as the Neuro Surgeon to finally, after 3 years, hopefully close up the 10cm hole in my head. The process will involve removing dead and/or infected bone, replacing with undoubtedly a synthetic material and then the Plastic Surgeon will either attempt to close the hole using the existing skin or possibly a skin graph. Not sure of when this will happen but the sooner the better since I am prone to infection all the time with this hole.
A great weight lifted off my shoulders this morning. Hopefully I can regain some energy with the chemo out of my body for a while.
Realistically, I will never be cured of this type of cancer due to its nature but I have bought myself more time with the chemo treatments to be able to spend quality time with those whom are close to me.
Thanks to you all for the amazing support you have given me over the past few years. It has made this bumpy road much more tolerable. And when the cancer does decide to grow again, I will be there with 2 fists up, ready to take it on!!
Sincerely,
Ed
Tuesday, January 31, 2012
Jan. 31 2012
Hello all!
I guess its been about 4 months since my last post and I guess that is mostly because I grew tired of talking about my life with cancer and all the baggage that comes with it.
I can't recall if I mentioned in my previous post that I now have 3 tumours along for the ride in my brain or not. Anyways...I do, and have now been on low dose chemotherapy for 299 days as of today. My last MRI showed some shrinkage in the newest (and smallest) tumour. The other 2 have not grown any further so the chemo must be doing some good. Unfortunately, the side effects continue to plague me. The worst is the drained energy level. There are some days where I think I could sleep for the full 24 hours! On top of all that, I still have the open site on the top of my head which has gone from a pinhole to the size of a quarter since my last surgery. I have been told in the past by the plastic surgeon and my Oncologist that they cannot attempt to close it while I am on chemo because of my already suppressed immune system as well as the fact that chemo hinders the healing process.
Fast forward to last week.........I received a notice in the mail that when they did a swab culture of the drainage from my head, the results came back saying that there was the presence of M.R.S.A. (Methicillin Resistant Staphylococcus aureus). So, I'm on 2 antibiotics for now until the powers that be decide what is the lessor of the 2 evils.....take me off chemo and perform a surgery to clean out my head, or continue chemo until my body rejects it and then do a surgery.
So until that time, I fight the daily headaches and pains with pill, pills and more pills.
This Friday I will get more botox shots in my lower leg to hopefully let my foot res better. When it wears off, I find that I am walking on the side of my foot which is quite painful as well as my leg has a lot of spasms during the night.
So my friends, that's it in a nutshell!!
Until next time........
Ed
I guess its been about 4 months since my last post and I guess that is mostly because I grew tired of talking about my life with cancer and all the baggage that comes with it.
I can't recall if I mentioned in my previous post that I now have 3 tumours along for the ride in my brain or not. Anyways...I do, and have now been on low dose chemotherapy for 299 days as of today. My last MRI showed some shrinkage in the newest (and smallest) tumour. The other 2 have not grown any further so the chemo must be doing some good. Unfortunately, the side effects continue to plague me. The worst is the drained energy level. There are some days where I think I could sleep for the full 24 hours! On top of all that, I still have the open site on the top of my head which has gone from a pinhole to the size of a quarter since my last surgery. I have been told in the past by the plastic surgeon and my Oncologist that they cannot attempt to close it while I am on chemo because of my already suppressed immune system as well as the fact that chemo hinders the healing process.
Fast forward to last week.........I received a notice in the mail that when they did a swab culture of the drainage from my head, the results came back saying that there was the presence of M.R.S.A. (Methicillin Resistant Staphylococcus aureus). So, I'm on 2 antibiotics for now until the powers that be decide what is the lessor of the 2 evils.....take me off chemo and perform a surgery to clean out my head, or continue chemo until my body rejects it and then do a surgery.
So until that time, I fight the daily headaches and pains with pill, pills and more pills.
This Friday I will get more botox shots in my lower leg to hopefully let my foot res better. When it wears off, I find that I am walking on the side of my foot which is quite painful as well as my leg has a lot of spasms during the night.
So my friends, that's it in a nutshell!!
Until next time........
Ed
Tuesday, September 20, 2011
Sept 20/11
Well today was "results" day from last week's MRI. I guess it was both good and bad. The good results were that both existing tumours have shrunk marginally. Not as much as I would have liked after 167 days of chemo but any shrinkage is better than none at all.
On the down side of things, another tumour has decided to form just behind the crown of where hair is "supposed" to be. It is fairly small at this point so it will just be checked at my next MRI (probably in about 3 months time)
The infection in the "hole" in my head seems to be clearing up with the help of some megadose antibiotics that I will be on for 3 months. As nasty as it may sound, you can actually see one of the screws from my previous surgery through the hole. The hole itself has become a bit bigger...probably due to all the poking and prodding going on with it lately. Homecare comes in weekly to clean it out as well as monitor my medications since I am taking upward of 140 pills a week.
Overall, I am still managing to keep a smile on my face. I feel extremely tired the majority of the time and the numbness of my leg is beginning to affect some of the surrounding joints in my body. This is undoubtedly because I am over-compensating with other joints/muscles since my leg doesn't like to play nice anymore.
I am taking a holiday beginning this Thursday and will be returning Oct. 14th.
Take care
Ed
On the down side of things, another tumour has decided to form just behind the crown of where hair is "supposed" to be. It is fairly small at this point so it will just be checked at my next MRI (probably in about 3 months time)
The infection in the "hole" in my head seems to be clearing up with the help of some megadose antibiotics that I will be on for 3 months. As nasty as it may sound, you can actually see one of the screws from my previous surgery through the hole. The hole itself has become a bit bigger...probably due to all the poking and prodding going on with it lately. Homecare comes in weekly to clean it out as well as monitor my medications since I am taking upward of 140 pills a week.
Overall, I am still managing to keep a smile on my face. I feel extremely tired the majority of the time and the numbness of my leg is beginning to affect some of the surrounding joints in my body. This is undoubtedly because I am over-compensating with other joints/muscles since my leg doesn't like to play nice anymore.
I am taking a holiday beginning this Thursday and will be returning Oct. 14th.
Take care
Ed
Thursday, August 18, 2011
Aug 18/2011
Well hopefully this is the beginning of things starting to calm down now. After weeks and weeks of planning, we held our fundraiser this past Sunday and despite the poor weather, it was a fairly good turnout. I think the Gall family is on their way to Disney!! We are still going to do some smaller fundraising to assist with spending money etc.
I was super proud of my daughter Faith....she came with me to help volunteer and lasted the entire 14 hours! I was truly impressed to see that from a 9 year old :)
Angela is finally out of the hospital as of yesterday so now she gets to start living her life again. She'll be supported by Homecare daily and there are still a ton of loose ends for me to work on but with any luck, that too will eventually slow down. It HAS to because I am really feeling the effects of all this running around for both the fundraiser and assisting getting Angela back on her feet.
Ok, on to my world....I went to see the plastic surgeon about the hole on the top of my head that has never healed properly since my last surgery in August 2008. The hole has actually continued to get wider and deeper. Deep enough that during my visit A(although I already knew this)the Doc noticed a bone fragment protruding out of the hole. So he instructs his Resident to, in layman's terms, go get a pair of pliers. Then they proceed to snip away at this bone about 6-7 times with no local freezing or anything. Not a fun experience!! Needless to say, I had a killer headache for the remainder of the day (on top of my usual 24/7 headache lately)
So a few days later, I ge a call from the Neurosurgeon who did my last craniotomy at University Hospital, booking me an appt to come see him. Ends up that I have a very nasty infection in my head that may have affected part of the skull bone also. This infection (pseudomosis) is very resistant to antibiotics I was told. So my next visitor that day was from the "Infectious Disease Control" team to assess the issue and come up with a plan.At the end of the day, I was put on 2 different strong antibiotics for a month and was told that if this does not clear it up, they may have to consider surgery to remove some infected bone and replace it with something synthetic. The party continues!! Ugh
Cancer Clinic appt next week to determine whether to keep me on chemo or not. They can't do surgery if I'm on chemo. I guess we decide whats the lesser of the 2 evils at that point.Then to add more drama to the issue, we need to make a decision on holding off on this surgery until we see the results of my next brain scan in September at which point we (I) will decide whether or not to have them attempt to remove some, if not all, of the larger tumour of the two that are currently in there. Major risks involved with that surgery so I will have a lot of thinking to do next month regarding the risk factors, what deficits I would be left with and what quality of life I would be left with.
So yeah, I need to clear my plate off real soon so that I can start concentrating on me.....I feel September is going to be a very trying month.
As the song goes....."its like trying to turn around on a one-way street..."
Until next time..
Ed
I was super proud of my daughter Faith....she came with me to help volunteer and lasted the entire 14 hours! I was truly impressed to see that from a 9 year old :)
Angela is finally out of the hospital as of yesterday so now she gets to start living her life again. She'll be supported by Homecare daily and there are still a ton of loose ends for me to work on but with any luck, that too will eventually slow down. It HAS to because I am really feeling the effects of all this running around for both the fundraiser and assisting getting Angela back on her feet.
Ok, on to my world....I went to see the plastic surgeon about the hole on the top of my head that has never healed properly since my last surgery in August 2008. The hole has actually continued to get wider and deeper. Deep enough that during my visit A(although I already knew this)the Doc noticed a bone fragment protruding out of the hole. So he instructs his Resident to, in layman's terms, go get a pair of pliers. Then they proceed to snip away at this bone about 6-7 times with no local freezing or anything. Not a fun experience!! Needless to say, I had a killer headache for the remainder of the day (on top of my usual 24/7 headache lately)
So a few days later, I ge a call from the Neurosurgeon who did my last craniotomy at University Hospital, booking me an appt to come see him. Ends up that I have a very nasty infection in my head that may have affected part of the skull bone also. This infection (pseudomosis) is very resistant to antibiotics I was told. So my next visitor that day was from the "Infectious Disease Control" team to assess the issue and come up with a plan.At the end of the day, I was put on 2 different strong antibiotics for a month and was told that if this does not clear it up, they may have to consider surgery to remove some infected bone and replace it with something synthetic. The party continues!! Ugh
Cancer Clinic appt next week to determine whether to keep me on chemo or not. They can't do surgery if I'm on chemo. I guess we decide whats the lesser of the 2 evils at that point.Then to add more drama to the issue, we need to make a decision on holding off on this surgery until we see the results of my next brain scan in September at which point we (I) will decide whether or not to have them attempt to remove some, if not all, of the larger tumour of the two that are currently in there. Major risks involved with that surgery so I will have a lot of thinking to do next month regarding the risk factors, what deficits I would be left with and what quality of life I would be left with.
So yeah, I need to clear my plate off real soon so that I can start concentrating on me.....I feel September is going to be a very trying month.
As the song goes....."its like trying to turn around on a one-way street..."
Until next time..
Ed
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