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
Monday, March 12, 2012
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
Thursday, July 28, 2011
July 28/2011 Update
Hello all:
So after the drug expense fiasco of 2 days ago, the Cancer Clinic called me in again yesterday and have approved me to have a "Drug Card". I guess what this means is that I will actually pay even less than before I capped out for the year at $25 000 with my work plan. The only string attached to this is that I MUST accept Homecare now. That means having a nurse and/or PSW come in to the home to check on me etc. I guess its a small kick at my pride but overall a good thing. Honestly, its not even the chemo drugs that I was truly concerned about paying for, it was all the other drugs that I take too. I still don't have much confidence that the chemo will work but I will stick with conventional medicine until they tell me otherwise.
Thank you to everyone who voiced their concern over this matter. Just found out too, that if you take I.V. chemo at the hospital, you don't pay anything for it. (so I was told third-party anyways) Where is the rhyme and reason to that?? Brain tumours are most effectively combated by Temozolomide, which comes in pill form and is obviously not covered by our OHIP plan. Anyways, enough griping about that...I'm back on chemo as of yesterday and this will be day 113 of taking it in a row (with the exception of the one day missed due to no coverage) Oh joy oh bliss.
Onto something a little brighter.....kinda
I am part of a fundraising team to help send a local family of 5 to Disney this Fall. Sadly, the Father of the family has been effected by a terminal cancer and they are telling him he does not have much hope past a year. The dad and mom are only 37 and 36 years old with 3 children under the age of 10. I know from first-hand experience when my co-workers from Cami, my military friends as well as all my other family and friends rallied together to allow my daughter Faith and I, to enjoy an experience of a lifetime at Disney as well as to go on a Disney cruise. Knowing how much it will mean to each and every one of them, how could I not help out!!
As part of our fundraising efforts, we are having an event on Sunday August 14th at Quai Du Vin Estate Winery just outside of St.Thomas. I would truly appreciate any support you can give whether it be coming to the event with you family and friends, contributing to the cause through a donation, or a product/service to be offered as part of our auctions, draws etc. For more information, please visit the following website....www.studioartsrock.com for lots more details. Any assistance to make such a memorable experience for this young local family would be greatly appreciated. If you know of any corporate or local business that may want to participate or want more information or tickets, please feel free to contact me (ed_mcdade@hotmail.com)
Thank you in advance for all your support of me as well as this local family
Ed
So after the drug expense fiasco of 2 days ago, the Cancer Clinic called me in again yesterday and have approved me to have a "Drug Card". I guess what this means is that I will actually pay even less than before I capped out for the year at $25 000 with my work plan. The only string attached to this is that I MUST accept Homecare now. That means having a nurse and/or PSW come in to the home to check on me etc. I guess its a small kick at my pride but overall a good thing. Honestly, its not even the chemo drugs that I was truly concerned about paying for, it was all the other drugs that I take too. I still don't have much confidence that the chemo will work but I will stick with conventional medicine until they tell me otherwise.
Thank you to everyone who voiced their concern over this matter. Just found out too, that if you take I.V. chemo at the hospital, you don't pay anything for it. (so I was told third-party anyways) Where is the rhyme and reason to that?? Brain tumours are most effectively combated by Temozolomide, which comes in pill form and is obviously not covered by our OHIP plan. Anyways, enough griping about that...I'm back on chemo as of yesterday and this will be day 113 of taking it in a row (with the exception of the one day missed due to no coverage) Oh joy oh bliss.
Onto something a little brighter.....kinda
I am part of a fundraising team to help send a local family of 5 to Disney this Fall. Sadly, the Father of the family has been effected by a terminal cancer and they are telling him he does not have much hope past a year. The dad and mom are only 37 and 36 years old with 3 children under the age of 10. I know from first-hand experience when my co-workers from Cami, my military friends as well as all my other family and friends rallied together to allow my daughter Faith and I, to enjoy an experience of a lifetime at Disney as well as to go on a Disney cruise. Knowing how much it will mean to each and every one of them, how could I not help out!!
As part of our fundraising efforts, we are having an event on Sunday August 14th at Quai Du Vin Estate Winery just outside of St.Thomas. I would truly appreciate any support you can give whether it be coming to the event with you family and friends, contributing to the cause through a donation, or a product/service to be offered as part of our auctions, draws etc. For more information, please visit the following website....www.studioartsrock.com for lots more details. Any assistance to make such a memorable experience for this young local family would be greatly appreciated. If you know of any corporate or local business that may want to participate or want more information or tickets, please feel free to contact me (ed_mcdade@hotmail.com)
Thank you in advance for all your support of me as well as this local family
Ed
Tuesday, July 26, 2011
July 26/2011
Had another cancer clinic appt today. My oncologist took yet another look at the "hole" that has never healed since my second surgery and now thinks there is a possibility that the skull may be infected (as well as the surrounding tissue) If this in fact turns out to be the case, it may mean removing the infected portion, and later replacing with a synthetic piece. Won't know any more details until I see the plastic surgeon. There is also a piece of bone that is now protruding through the hole which doesn't make matters any easier. The whole matter is in a holding pattern until we see what the tumour is doing after my next scan. It may be surgery time....who knows at this point. (thats if I opt for the surgery....depends on what deficits they tell me to expect) If there will be no quality of life....guess that makes my choice pretty straight forward.
So my oncologist decided to keep on giving me chemo in hopes that one day, it may reach the deep tumour and have some effect on it. Personally, I think its a pipe dream but whatever. I get my prescription, head to the on-site pharmacy, only to find out that I have already this year, received $25 000.00 worth of medication and that is the cap of my drug plan through my previous employer. Needless to say, I did not have $4800.00 in my pocket to pay for 28 chemotherapy pills!! So I ended up walking out of there without any chemo meds and they are working on a plan (I imagine through the Trillium Foundation) to have the meds paid for by the gov't. Until that time I will hurry up and wait. Actually I am in no hurry because I am beginning to think this chemo is a futile effort that is only beating me up more and more with every pill swallowed. 112 days of chemo with only minimal results on the smaller tumour and zero results on the larger, deeper tumour. I'm on the edge of not bothering with it to be honest. Maybe its just "one of those days" but those are my thoughts at this moment.
Had a small focal seizure this past weekend, which, to me, is a sign that the larger tumour is continuing to grow. I will have to wait until Sept 13th until my next MRI to find out though. That seems like years away to wait for a known aggressive tumour. So MRI on that date...then usually have to wait a week or 2 for the follow-up appt. Oh joy.
Ed
So my oncologist decided to keep on giving me chemo in hopes that one day, it may reach the deep tumour and have some effect on it. Personally, I think its a pipe dream but whatever. I get my prescription, head to the on-site pharmacy, only to find out that I have already this year, received $25 000.00 worth of medication and that is the cap of my drug plan through my previous employer. Needless to say, I did not have $4800.00 in my pocket to pay for 28 chemotherapy pills!! So I ended up walking out of there without any chemo meds and they are working on a plan (I imagine through the Trillium Foundation) to have the meds paid for by the gov't. Until that time I will hurry up and wait. Actually I am in no hurry because I am beginning to think this chemo is a futile effort that is only beating me up more and more with every pill swallowed. 112 days of chemo with only minimal results on the smaller tumour and zero results on the larger, deeper tumour. I'm on the edge of not bothering with it to be honest. Maybe its just "one of those days" but those are my thoughts at this moment.
Had a small focal seizure this past weekend, which, to me, is a sign that the larger tumour is continuing to grow. I will have to wait until Sept 13th until my next MRI to find out though. That seems like years away to wait for a known aggressive tumour. So MRI on that date...then usually have to wait a week or 2 for the follow-up appt. Oh joy.
Ed
Tuesday, June 28, 2011
June 28/11
Well not the best news after 85 days of chemotherapy. The larger of the two tumours continues to grow so the chemo has not worked on it. The smaller tumour has shrunk a bit from the chemo. The explanation I was given was that the chemo was able to attack the smaller tumour because it is closer to the surface of the brain. The larger tumour is quite deep in the brain, away from the original site, thus the chemo not being able to infiltrate deep enough to do any work on it.
My left arm and facial numbness issue is actually a seizure in disguise. These are presenting due to the fact that the tumour is growing and obviously displacing the brain territory.
Sooooooooo, with all that being said, I am going on another 28 day all expense paid chemo trip again. I have been given an additional anti-seizure med to work with my current med and will head back to the Cancer Clinic in a month for another appt. Looks like it will be 2 months before my next MRI unless any complications arise before that.
I may sound a bit nonchalant about all of this lately, but I think I am just growing numb to the events that happen over the course of this journey. As I have in the past, I will keep the boxing gloves on for "one more round" and re-charge my batteries whenever I can.
Creeping Charlie has not won yet ;)
Thank you for all your positive thoughts and wishes....they truly do mean the world to me.I read each and every post, e-mail, text etc before I hit the clinic and it gives me the focus and strength to carry on the fight. (ok, mabe a little white lie there.....my little girl is my #1 inspiration) but you all are a very close second ;)
My left arm and facial numbness issue is actually a seizure in disguise. These are presenting due to the fact that the tumour is growing and obviously displacing the brain territory.
Sooooooooo, with all that being said, I am going on another 28 day all expense paid chemo trip again. I have been given an additional anti-seizure med to work with my current med and will head back to the Cancer Clinic in a month for another appt. Looks like it will be 2 months before my next MRI unless any complications arise before that.
I may sound a bit nonchalant about all of this lately, but I think I am just growing numb to the events that happen over the course of this journey. As I have in the past, I will keep the boxing gloves on for "one more round" and re-charge my batteries whenever I can.
Creeping Charlie has not won yet ;)
Thank you for all your positive thoughts and wishes....they truly do mean the world to me.I read each and every post, e-mail, text etc before I hit the clinic and it gives me the focus and strength to carry on the fight. (ok, mabe a little white lie there.....my little girl is my #1 inspiration) but you all are a very close second ;)
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