So what a week or so it has been. A ton of good things happening but it is also taking a small toll on me I think. 2 focal seizures in the past 2 days....all just stress-related I'm hoping. I can't thank Dianne enough for all the tireless work she has put into this effort thus far. I think I need to be holed up in a hotel somewhere for a couple of days to get my affairs in order and re-group somewhat.
I don't think we will get much, if any response from Deb Matthews however, as I was informed yesterday by her assistant that this matter will go through the C.E.D. (Committee to Evaluate Drugs) under the direction of a Diane MacArthur sp? Matthews position is prohibited from getting involved in any specific cases to apparently keep politics and emotionalism out of the results. Makes sense I guess. The bottleneck right now is my Oncologist, with his preparation of a report that he promised me a week ago today! And yes, I've called daily to everyone but God at the London Regional Cancer Clinic inquiring! I'm sure he is a busy man but hey, I'm a dying man dammit.
We are planning a sort of Celebration party in November hopefully so that I may see old and new friends alike. Will pass along details as they become available. Its too much for me to have daily visitors at the moment with all that is going on, so this way I can make a terrific evening of it and invite you all to come celebrate my life with me. It may sound morbid to some but this is what I want to have happen.....people to see and visit with me before things turn south.
I'm on Day 10 of 21 of the Etoposide Chemo right now. No noticeable side effects other than some hand and lip numbness, which was listed as possible side effects anyway. No sense telling the Cancer clinic though....can't even get a damned form filled out there. Sorry, but slowly losing faith in that facility. I will remain on Etoposide for 2 rounds, perform an MRI to see what, if any effects its had on the growing tumour, and then 99.9% chance of switching to the Avastin after that. Fingers crossed after that, being as it is my last possible hope with Western Medicine.
Sleep and I are still enemies it seems...partially my own fault. I did get a new sleeping pill to try but am almost scared to take it because it already seems there are not enough hours in the day to accomplish what I need to and the wee hours of the morning seem to be when I get Ed time, to work on what is important to me....such as writing this blog to keep everyone up to date without having to repeat it over and over. It sucks when your conversations with people only revolve around the Big C. Count your blessings every day people!! God never promised you tomorrow.
EJM68
Friday, October 12, 2012
Sunday, October 7, 2012
Oct. 10/12
Happy Thanksgiving to all !
Firstly, if anyone who reads this Blog did not get my latest update via e-mail or Facebook message, please send me an e-mail at ed_mcdade@hotmail.com and I will forward the information to you.
So I have started on a new chemo as of Oct. 3/12. ETOPOSIDE is another oral chemo that I will take each day for 21 days then get one week reprieve from and then start the process again. We are hoping to be able to at least use this for 2 rounds and then do another MRI to see what effect it has had on the tumour. If there are no positive results showing on the MRI, I will then (99.9% sure) proceed to the final conventional treatment available....AVASTIN.
In discussion with the drug company that manufactures Avastin, Roche, it looks like it will cost me approx. $8700.00 per month minus any possible assistance they may provide ( up to 20%) if I qualify. I am still waiting to hear back on what "qualifies"you for assistance.
With the assistance of some friends, we have been lobbying to the Provincial levels of gov't to try to get this drug covered for Brain Tumour patients. It just does not seem fair that they make this drug so far out of reach for us common folk. If not even for my case, I hope the stirring of the pot helps others in the future faced with the same issue.
I truly apologize if I have not been able to return your phone calls, e-mails etc as of yet. I am working on it though. All your messages mean the world to me :) I have read each and every one of them and saved them.
Please truly be THANKFUL this weekend for all that you have been blessed with in your lives. God never promised us tomorrow.
Until my next post........take care and know that you are all in my thoughts.
Tomorrow I shall wake to fight again!
PS: I love you Faith! :)
Firstly, if anyone who reads this Blog did not get my latest update via e-mail or Facebook message, please send me an e-mail at ed_mcdade@hotmail.com and I will forward the information to you.
So I have started on a new chemo as of Oct. 3/12. ETOPOSIDE is another oral chemo that I will take each day for 21 days then get one week reprieve from and then start the process again. We are hoping to be able to at least use this for 2 rounds and then do another MRI to see what effect it has had on the tumour. If there are no positive results showing on the MRI, I will then (99.9% sure) proceed to the final conventional treatment available....AVASTIN.
In discussion with the drug company that manufactures Avastin, Roche, it looks like it will cost me approx. $8700.00 per month minus any possible assistance they may provide ( up to 20%) if I qualify. I am still waiting to hear back on what "qualifies"you for assistance.
With the assistance of some friends, we have been lobbying to the Provincial levels of gov't to try to get this drug covered for Brain Tumour patients. It just does not seem fair that they make this drug so far out of reach for us common folk. If not even for my case, I hope the stirring of the pot helps others in the future faced with the same issue.
I truly apologize if I have not been able to return your phone calls, e-mails etc as of yet. I am working on it though. All your messages mean the world to me :) I have read each and every one of them and saved them.
Please truly be THANKFUL this weekend for all that you have been blessed with in your lives. God never promised us tomorrow.
Until my next post........take care and know that you are all in my thoughts.
Tomorrow I shall wake to fight again!
PS: I love you Faith! :)
Tuesday, September 25, 2012
Sept 25 2012
Well after a lengthy 3-way call with General Motors and our Health Care insurance provider this morning, they flat out told me NO, they do not cover the Avastin drug for use in brain cancer. I feel as if the doors are all beginning to close around me now. Seems to be no escape from the enevitable it seems.
.......................................... . . .
.......................................... . . .
Monday, September 24, 2012
Sept 24 2012
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
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
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.
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