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.
Thursday, August 9, 2012
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
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
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