So as my body was already telling me, my Oncologist confirmed today that newest chemotherapy they put me on is not working. My latest MRI taken last Tuesday showed growth in the tumour. With that being said, he has taken me off the chemo and I start planning my next course of action.
Exactly.....what is my next plan!!?? Well there is a drug out there that MAY work for a period of around 6 months to a year called Avastin. Downside to it is the fact that is only covered in British Columbia for use on Brain Cancer folks and not the rest of Canada. For those of us in good ole Ontario, that means it will cost between $8000 and $15000 per month out of pocket if your private insurance company does not cover it either. My Oncologist forewarned me that the majority will NOT cover it because testing shows that the lack of longevity it provides does not make financial sense.
More downsides are that since this type of chemo attacks the blood vessels of the tumour, my Oncologist has witnessed patients dying from complications such as developing a bleed on the brain due to burst blood vessels. Not to mention heart failure as well as a number of other serious side effects.
So over the next few days I obviously have some serious thinking to do as well as investigating the pros and cons of this drug. Oh, and then there is the issue of whether or not my private insurance will even cover it. ( I seriously have my doubts ) For the insurance company, it will all be about making a business decision based on that whole "longevity "issue. After all, they have our gov't standing behind them on this one.
Anyways, things don't seem too rosy right now so I will close this off and maybe continue it another day when I have thought things through a bit more and hopefully have some answers.
Funny thing is...........For the past couple of years, I've told myself I will probably only see the 5 year mark. Hmmmm...this coming January IS 5 years.
Til next time
Ed
Monday, September 24, 2012
Tuesday, September 18, 2012
Sept 19 2012
Good EARLY morning:
Just a quick blog to let you know that I go for my first MRI today since being diagnosed with this latest tumour. Being as this new chemotherapy is kicking the heck out of me, I can only hope that it is doing the same to the tumour. I will not get the MRI results until a week from now so stay tuned I guess.
Sleep is still not my friend. I have tried almost every concoction out there with no luck as of yet. I guess the old saying is true.....you can sleep when you're dead. My blood counts are plummetting this week....platelet levels and white cell levels being the most affected.
I will update more next week after my Cancer Clinic appt in regards to results.
Take care
Ed
Just a quick blog to let you know that I go for my first MRI today since being diagnosed with this latest tumour. Being as this new chemotherapy is kicking the heck out of me, I can only hope that it is doing the same to the tumour. I will not get the MRI results until a week from now so stay tuned I guess.
Sleep is still not my friend. I have tried almost every concoction out there with no luck as of yet. I guess the old saying is true.....you can sleep when you're dead. My blood counts are plummetting this week....platelet levels and white cell levels being the most affected.
I will update more next week after my Cancer Clinic appt in regards to results.
Take care
Ed
Tuesday, August 14, 2012
Ding Ding Ding....Round Two Chemo Aug. 13/12
Yesterday I was finally cleared to start another round of Chemo. My blood levels etc are not optimal but are good enough according the professionals.......so away we go!! I obviously have mixed emotions about starting this new chemo again since it knocked me on my butt last time and landed me in hospital for 3 days.
Whats the alternative though I guess right? If it keeps me on the right side of the dirt, then I just have to suck it up like the rest of the Cancer World and trudge onward. I apologize if I am repeating myself in advance, but one small light in this tunnel is that they also doubled my dosage of Dexamethasone to decrease the seizures and it seems to be working!! The other edge of that sword is that it doubles the amount of sleep I am deprived of as well as increases my appetite tenfold I think.
Along with that, I feel my tolerance level of normal everyday things has me on edge lately. The joys of drugs. UGH
Busy week ahead of me with appointments, kids soccer 3 times and organizing for this weekend's fundraiser. Thankfully once Sunday is over, so is soccer until Fall and the fundraiser will be a successful memory! At that point, it will be high time to concentrate on ME again and work on keeping as healthy and sane as possible. lol
As much as I sound like a broken record..........thank you to all for the outpouring of support you give me at each and every hurtle. Its that stuff that energizes me and keeps me pushing the envelope even further to keep the Cancer demon away from my doorstep.
I need to find a reasonably priced R.M.T. soon....my left leg's muscles are deteriorating from the numbness issues etc. I feel the atrophy setting in and am losing any flexibility. Any suggestions? Local only please.
Love to you all XX
Ed
Whats the alternative though I guess right? If it keeps me on the right side of the dirt, then I just have to suck it up like the rest of the Cancer World and trudge onward. I apologize if I am repeating myself in advance, but one small light in this tunnel is that they also doubled my dosage of Dexamethasone to decrease the seizures and it seems to be working!! The other edge of that sword is that it doubles the amount of sleep I am deprived of as well as increases my appetite tenfold I think.
Along with that, I feel my tolerance level of normal everyday things has me on edge lately. The joys of drugs. UGH
Busy week ahead of me with appointments, kids soccer 3 times and organizing for this weekend's fundraiser. Thankfully once Sunday is over, so is soccer until Fall and the fundraiser will be a successful memory! At that point, it will be high time to concentrate on ME again and work on keeping as healthy and sane as possible. lol
As much as I sound like a broken record..........thank you to all for the outpouring of support you give me at each and every hurtle. Its that stuff that energizes me and keeps me pushing the envelope even further to keep the Cancer demon away from my doorstep.
I need to find a reasonably priced R.M.T. soon....my left leg's muscles are deteriorating from the numbness issues etc. I feel the atrophy setting in and am losing any flexibility. Any suggestions? Local only please.
Love to you all XX
Ed
Thursday, August 9, 2012
August 9/12
Oh boy.....where to begin this one?!
Since my last post on July 24/12, things certainly took a turn for the worse regarding the effect the new chemo (Lomustine) has had on my body. I ended up being admitted for 3 LONG days and nights in our local hospital on the advice of the Cancer Clinic in London. My platelet and white blood cell levels continued to plummet, a temperature of 38.5 degrees and the ever-present infection lurking in my head, I guess medical intervention was the only way to fix it this time. Couldn't get out of this one with only my stubborn attitude ....dammit!
So after 3 days of being hooked to I.V. bags for all of the above issues, I was released again to wreak havoc on society. Needless to say, I almost directly headed to my only place of solice these days.....my trailer. When I am there, I find peace within myself and find that I can regain some strength both physically and emotionally to face the realities of life that are scratching at my door, begging to be let in out of the cold on a blustery winter's night.
Realities such as I am fighting this fight in essence, alone now. My rock had reached her limit in dealing with the "Life with Cancer "I guess and needed to work on her own life. The timing unfortunately could not have been worse. I felt I was abandoned during my darkest moment of my 4+ year fight with Cancer. Nevertheless, we all have to do what is right for us and look out for number one, so I wish her the best of luck going forward with her own life.
At the time of writing, the Doctor still does not feel I am ready for another round of chemo. I was supposed to begin this past Tuesday but he wants to wait another week to see if all my levels improve enough to begin the body-beating again. The fatigue level I experience with this chemotherapy is unlike anything I have ever experienced in my life. I consider myself a fairly tough cookie but this drug knocked me down in every way imaginable. People have commented on how good I still look, which normally would be a nice compliment to hear, but without holding anything back, I have to tell you that those words are the last words I want to hear right now. Why you ask? I guess its because I do not feel good at this point, inside or out! I sit here and watch my body physically deteriorate week by week, knowing there is not a damn thing I can do about it. And for someone who has been in control of his own destiny the majority of his adult life, this is a very difficult and sometimes bitter pill to swallow.
Don't take that wrong though, I truly do enjoy hearing from everyone. This path would have ended a long time ago were it not for all the well wishes, encouraging words and kind deeds that you have all given me throughout the fight. Right now, I just need visits and phone calls etc to be brief. My body is screaming for attention and I think its time I paid attention to it rather than worrying about the rest of the world.
My family, both immediate and extended have been a blessing lately. They have jumped in feet first to help me where there is now a void. Dealing with me, along with my younger sister's issues, is more than any parent, especially in their retirement years, should have to worry about. I hope, Mom and Dad, that if you are reading this, that you will both take the time for yourselves too, I need you here healthy and happy, along side of me ok !
Have I been irritable and grumpy lately.....hell yes. Sadly I even see it in myself as I'm sure those who are close to me have noticed also. I believe that this too shall pass, just a bump in the road due to the events that have gone on the past couple of months in my life. I apologize in advance, none of my unhappiness is caused by any of you :) Being so independent all these years, its just hard to come to the realization that I DO need help once in a while from others.....again, sometimes a hard and bitter pill to swallow for me.
The focal seizures continue to plague my left side, but the severity and frequency seem to have lessened since they increased the dosage of Dexamethasone about a week ago (Dex. is used to reduce swelling on the brain). Of course the downside to that is the primary side effect....NO SLEEP!! I am lucky to get 3-5 hours of sleep a night, and that is with the aid of a sleeping pill. Oh well, like I've always said......we can sleep when we're dead!
So going forward, we shall hopefully attempt chemo again next week. My next MRI is still planned for September and by that time, we should know if the chemo is having any effect on reducing the size of this latest tumour. FINGERS CROSSED
On a final note, my angel of a daughter Faith, has been a trooper through all of my ups and downs. She has taken my illness by the horns and helps me immensely....probably unbeknownst to her all the while. I love that kid of mine :)
Wishing you all the very best in life...........
Regards,
Ed
Rest in Peace Paul Davies who very recently lost his battle to Brain Cancer. You are gone now but the memories beginning way back in childhood in the old neighbourhood will forever be etched in my mind and heart.
Since my last post on July 24/12, things certainly took a turn for the worse regarding the effect the new chemo (Lomustine) has had on my body. I ended up being admitted for 3 LONG days and nights in our local hospital on the advice of the Cancer Clinic in London. My platelet and white blood cell levels continued to plummet, a temperature of 38.5 degrees and the ever-present infection lurking in my head, I guess medical intervention was the only way to fix it this time. Couldn't get out of this one with only my stubborn attitude ....dammit!
So after 3 days of being hooked to I.V. bags for all of the above issues, I was released again to wreak havoc on society. Needless to say, I almost directly headed to my only place of solice these days.....my trailer. When I am there, I find peace within myself and find that I can regain some strength both physically and emotionally to face the realities of life that are scratching at my door, begging to be let in out of the cold on a blustery winter's night.
Realities such as I am fighting this fight in essence, alone now. My rock had reached her limit in dealing with the "Life with Cancer "I guess and needed to work on her own life. The timing unfortunately could not have been worse. I felt I was abandoned during my darkest moment of my 4+ year fight with Cancer. Nevertheless, we all have to do what is right for us and look out for number one, so I wish her the best of luck going forward with her own life.
At the time of writing, the Doctor still does not feel I am ready for another round of chemo. I was supposed to begin this past Tuesday but he wants to wait another week to see if all my levels improve enough to begin the body-beating again. The fatigue level I experience with this chemotherapy is unlike anything I have ever experienced in my life. I consider myself a fairly tough cookie but this drug knocked me down in every way imaginable. People have commented on how good I still look, which normally would be a nice compliment to hear, but without holding anything back, I have to tell you that those words are the last words I want to hear right now. Why you ask? I guess its because I do not feel good at this point, inside or out! I sit here and watch my body physically deteriorate week by week, knowing there is not a damn thing I can do about it. And for someone who has been in control of his own destiny the majority of his adult life, this is a very difficult and sometimes bitter pill to swallow.
Don't take that wrong though, I truly do enjoy hearing from everyone. This path would have ended a long time ago were it not for all the well wishes, encouraging words and kind deeds that you have all given me throughout the fight. Right now, I just need visits and phone calls etc to be brief. My body is screaming for attention and I think its time I paid attention to it rather than worrying about the rest of the world.
My family, both immediate and extended have been a blessing lately. They have jumped in feet first to help me where there is now a void. Dealing with me, along with my younger sister's issues, is more than any parent, especially in their retirement years, should have to worry about. I hope, Mom and Dad, that if you are reading this, that you will both take the time for yourselves too, I need you here healthy and happy, along side of me ok !
Have I been irritable and grumpy lately.....hell yes. Sadly I even see it in myself as I'm sure those who are close to me have noticed also. I believe that this too shall pass, just a bump in the road due to the events that have gone on the past couple of months in my life. I apologize in advance, none of my unhappiness is caused by any of you :) Being so independent all these years, its just hard to come to the realization that I DO need help once in a while from others.....again, sometimes a hard and bitter pill to swallow for me.
The focal seizures continue to plague my left side, but the severity and frequency seem to have lessened since they increased the dosage of Dexamethasone about a week ago (Dex. is used to reduce swelling on the brain). Of course the downside to that is the primary side effect....NO SLEEP!! I am lucky to get 3-5 hours of sleep a night, and that is with the aid of a sleeping pill. Oh well, like I've always said......we can sleep when we're dead!
So going forward, we shall hopefully attempt chemo again next week. My next MRI is still planned for September and by that time, we should know if the chemo is having any effect on reducing the size of this latest tumour. FINGERS CROSSED
On a final note, my angel of a daughter Faith, has been a trooper through all of my ups and downs. She has taken my illness by the horns and helps me immensely....probably unbeknownst to her all the while. I love that kid of mine :)
Wishing you all the very best in life...........
Regards,
Ed
Rest in Peace Paul Davies who very recently lost his battle to Brain Cancer. You are gone now but the memories beginning way back in childhood in the old neighbourhood will forever be etched in my mind and heart.
Tuesday, July 24, 2012
July 24/12
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
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
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
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