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
Tuesday, September 20, 2011
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 ;)
Saturday, June 18, 2011
June 18/2011
Well its been a few weeks since my last update so I guess its time.......
First and foremost, my heart goes out to my Aunt Carol and family (mom's sister) on the tragic loss of her son recently. So very sad, he was only 41 with a partner and 2 kids. Just another slap in the face kind of reminder, that we can all go at any time. Live your life to the fullest and live with no regrets.
Well we have finally secured a place for Angela to call "home". She will be moving into an apartment complex in August. It is a ground floor unit and she will be receiving in-home care via Cheshire House. This is a HUGE weight lifted from my shoulders. Still a ton of work to be done from clearing out her old apartment, to storing her belongings temporarily and purchasing all the mobility aids that she will require for around and outside the home. Supposedly there is financial assistance out there to help with this transition for her....but its like getting blood from a stone to get any gov't organization to commit. Angela continues to undergo dialysis treatment 3 times a week and is slowly regaining some strength physically.
If any of my old Cami friends from the St.Thomas area are able to get any wire harness boxes in the next while, myself or someone from my family would gladly pick them up from you. (hint hint) :) We'll need to start packing up her life soon I'd imagine.
Ok, on to me........I'm currently on DAY 74 of chemo. No break in between, no trip to never-neverland, they just keep feeding it to me daily. I will be done the third round on June 27th. Over the past few weeks, my energy level has dropped significantly. I have a hard time making it through the day at times but just kick myself in the butt and trudge onward. I'm at the point of where I'll have my own little conversation with my chemo pill asking it "are you even working?? Have I been taking you and your toxic effects for the last 70 plus days for nothing??" Some days I'll even look at the pill and get within inches of putting it back in the pill bottle and saying screw it. But, to date, I've complied with what conventional medicine says I should do. If I get poor MRI results this time....it might be a different story.
Next MRI is Monday June 20th at 3:45pm, then wait another 8 days for my results appt on the 28th at 2pm.
I'd be lying if I told you everything is rosy right now. As I said, my energy level has significantly decreased, I'm having bladder issues lately, and my vision seems to blur at times. I find I am stumbling for words during conversations and feel like I'm living in a haze some days. Whether the root cause of all this is due to the amount of chemo that has been ingested into my body over the last 3 months or the tumours are taking over.....I don't know. I guess by the end of the month, the ugly answers shall rear their heads.
I appreciate everyone's kindness toward me during all this. All your tokens of thoughtfulness are truly appreciated and remembered. One thing I really have to bite my tongue on (as I'm sure many people fighting cancer or any other terminal disease do) is when people approach me and say "hey, you look good". lol I honestly know that people say it with the best of intentions and all that but there are just some days that I'd like to come back with a good retort. I don't though...and never will, because I know these people are just kind, caring people who do are genuine with their intentions. As an old fellow supervisor at Cami would say( Lester)...its still Ed, the metrosexual. lol I still do my best to look as good as I can with what I've got. For me, looking good, makes me feel somewhat better, almost as if my life was normal. Dare ya to step INSIDE of me though....its a nasty place :(
Happy Father's Day to my Dad...and to all the other Dads out there who do actually take interest in their child's life. I know in my heart, I'm doing the best I can with Faith....no matter what shit-slinging others may toss at me :)
Thanks for listening :)
Next update will undoubtedly be after the 28th appointment.
Peace
PS: Before you raise an eyebrow about the metrosexual comment....Google it heh heh
First and foremost, my heart goes out to my Aunt Carol and family (mom's sister) on the tragic loss of her son recently. So very sad, he was only 41 with a partner and 2 kids. Just another slap in the face kind of reminder, that we can all go at any time. Live your life to the fullest and live with no regrets.
Well we have finally secured a place for Angela to call "home". She will be moving into an apartment complex in August. It is a ground floor unit and she will be receiving in-home care via Cheshire House. This is a HUGE weight lifted from my shoulders. Still a ton of work to be done from clearing out her old apartment, to storing her belongings temporarily and purchasing all the mobility aids that she will require for around and outside the home. Supposedly there is financial assistance out there to help with this transition for her....but its like getting blood from a stone to get any gov't organization to commit. Angela continues to undergo dialysis treatment 3 times a week and is slowly regaining some strength physically.
If any of my old Cami friends from the St.Thomas area are able to get any wire harness boxes in the next while, myself or someone from my family would gladly pick them up from you. (hint hint) :) We'll need to start packing up her life soon I'd imagine.
Ok, on to me........I'm currently on DAY 74 of chemo. No break in between, no trip to never-neverland, they just keep feeding it to me daily. I will be done the third round on June 27th. Over the past few weeks, my energy level has dropped significantly. I have a hard time making it through the day at times but just kick myself in the butt and trudge onward. I'm at the point of where I'll have my own little conversation with my chemo pill asking it "are you even working?? Have I been taking you and your toxic effects for the last 70 plus days for nothing??" Some days I'll even look at the pill and get within inches of putting it back in the pill bottle and saying screw it. But, to date, I've complied with what conventional medicine says I should do. If I get poor MRI results this time....it might be a different story.
Next MRI is Monday June 20th at 3:45pm, then wait another 8 days for my results appt on the 28th at 2pm.
I'd be lying if I told you everything is rosy right now. As I said, my energy level has significantly decreased, I'm having bladder issues lately, and my vision seems to blur at times. I find I am stumbling for words during conversations and feel like I'm living in a haze some days. Whether the root cause of all this is due to the amount of chemo that has been ingested into my body over the last 3 months or the tumours are taking over.....I don't know. I guess by the end of the month, the ugly answers shall rear their heads.
I appreciate everyone's kindness toward me during all this. All your tokens of thoughtfulness are truly appreciated and remembered. One thing I really have to bite my tongue on (as I'm sure many people fighting cancer or any other terminal disease do) is when people approach me and say "hey, you look good". lol I honestly know that people say it with the best of intentions and all that but there are just some days that I'd like to come back with a good retort. I don't though...and never will, because I know these people are just kind, caring people who do are genuine with their intentions. As an old fellow supervisor at Cami would say( Lester)...its still Ed, the metrosexual. lol I still do my best to look as good as I can with what I've got. For me, looking good, makes me feel somewhat better, almost as if my life was normal. Dare ya to step INSIDE of me though....its a nasty place :(
Happy Father's Day to my Dad...and to all the other Dads out there who do actually take interest in their child's life. I know in my heart, I'm doing the best I can with Faith....no matter what shit-slinging others may toss at me :)
Thanks for listening :)
Next update will undoubtedly be after the 28th appointment.
Peace
PS: Before you raise an eyebrow about the metrosexual comment....Google it heh heh
Tuesday, June 7, 2011
June 7 2011
I ran across this on Facebook the other day.....definitely words to live by for all, not just the dying!!
REGRETS OF THE DYING
For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.
People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.
When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:
1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.
It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.
2. I wish I didn't work so hard.
This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.
By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.
3. I wish I'd had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.
We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.
4. I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.
It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.
5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.
When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.
Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.
PS: Happy Birthday to my sister Karen and Happy "25"th Wedding Anniversary to my sister Shirley and her hubby Morris. Now thats true love!!
REGRETS OF THE DYING
For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.
People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.
When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:
1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.
It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.
2. I wish I didn't work so hard.
This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.
By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.
3. I wish I'd had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.
We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.
4. I wish I had stayed in touch with my friends.
Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.
It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.
5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.
When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.
Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.
PS: Happy Birthday to my sister Karen and Happy "25"th Wedding Anniversary to my sister Shirley and her hubby Morris. Now thats true love!!
Wednesday, June 1, 2011
June 1/2011
Had another visit to the Cancer Clinic and it went as I expected unfortunately. They have thrown another 28 days of chemotherapy at me and its still just the "wait and see" game until June 20th when I finally get an MRI to see if the 84 days in a row of chemo has done any good or not. My "results" appt is on June 28th....whats another 8 days of waiting !!!
I feel the cumulative toll of the chemo starting to wear on me. I feel weaker and easily tire lately. I have gained about 10 pounds due to the effects of the steroids and overall, feel like I am in a haze. The end of this chemo session cannot come soon enough....its beating me up.
In the world of Angela, we are still looking for suitable housing for her with very little success. The hospital is ready to release her but there has not been any viable options for housing. Angela should be able to live independently as long as she has Home Care come in 2-3 times a day to assist with meals, medications and supervised bathing etc. Ang will require modified housing to accommodate a wheelchair and walker, along with all the usual assist bars in the bathroom etc. We have attempted to even locate a respite facility for up to 90 days, just to give everyone involved more time to find a place for her also, but with no luck so far. This is becoming more frustrating as the days go on. Angela had a vision appt the other day to be fitted for some new eye glasses. The Doctor informed her that she has suffered a fair bit of nerve damage in her eyes and her vision will be impaired undoubtedly forever, even with corrective lenses. With glasses, she should be able to function fairly decent though. Between that, the kidney failure, and all the other numerous physical impairments that she now has to deal with, Angela will certainly lead a very different life now.
Anyone who may have ANY ideas, thoughts or options on suitable housing........feel free to e-mail me. We are at wits end. Keeping in mind that Angela has a very limited income and has no disability insurance etc. My mail is ed_mcdade@hotmail.com
Not giving up.....
Ed
I feel the cumulative toll of the chemo starting to wear on me. I feel weaker and easily tire lately. I have gained about 10 pounds due to the effects of the steroids and overall, feel like I am in a haze. The end of this chemo session cannot come soon enough....its beating me up.
In the world of Angela, we are still looking for suitable housing for her with very little success. The hospital is ready to release her but there has not been any viable options for housing. Angela should be able to live independently as long as she has Home Care come in 2-3 times a day to assist with meals, medications and supervised bathing etc. Ang will require modified housing to accommodate a wheelchair and walker, along with all the usual assist bars in the bathroom etc. We have attempted to even locate a respite facility for up to 90 days, just to give everyone involved more time to find a place for her also, but with no luck so far. This is becoming more frustrating as the days go on. Angela had a vision appt the other day to be fitted for some new eye glasses. The Doctor informed her that she has suffered a fair bit of nerve damage in her eyes and her vision will be impaired undoubtedly forever, even with corrective lenses. With glasses, she should be able to function fairly decent though. Between that, the kidney failure, and all the other numerous physical impairments that she now has to deal with, Angela will certainly lead a very different life now.
Anyone who may have ANY ideas, thoughts or options on suitable housing........feel free to e-mail me. We are at wits end. Keeping in mind that Angela has a very limited income and has no disability insurance etc. My mail is ed_mcdade@hotmail.com
Not giving up.....
Ed
Tuesday, May 24, 2011
May 24/11
Well, let the fun begin!! We had our Family Meeting on Friday with the hospital staff. They are feeling that Angela could be released as early as the end of this week. As absolutely wonderful as that sounds, it also poses a bunch of issues that have to be worked out. First and foremost....where is Angela going to live????? Angela's current townhome rental is not going to work. Occupational Therapy has said she can not do any stairs at this time, nor does she have the ability to walk more than 50 metres (even with the use of a walker etc) There is also the concern about Angela's short-term memory loss. She will at minimum, require some type of home-care either through CCAC or Cheshire House (whom I invited to Friday's meeting) She will also require assistance with meals,medication, laundry, and many everyday tasks we all take for granted.
We may have to have Angela go into a Respite facility for up to 90 days until we can figure all this stuff out.She is not going to be happy about that but there is no other choice at this time. Through Cheshire Homes of London, there is about a 4 year waiting list for a unit in St.Thomas that has round the clock "assisted living." We may have to look for a private rental unit that is wheelchair-accessible for her. And gee, where is all the money going to come from to pay for all of this??? Stress level meter increasing by the minute!! lol
Needless to say, it will be a busy week for me and the family. Things will have to happen fast and furious before they boot her out of the hospital.
Happy Birthdays to my dad and sister Shirley, hope you both had a wonderful birthday weekend. I spent the weekend with Faith and one of her friends at the trailer. I have had it up for sale since last year but have asked for it to be taken off the market now because I feel that I am able to enjoy it a little more this year. Last year, I was in a bad place emotionally and my frustration level with my leg and everything else cancer-related was pretty high. I think I've grown to accept the new me a little more this year and thus, able to enjoy the trailer more.
My thoughts and prayers go out to Susie J. who is a dear friend of mine in Joplin. Thankfully her and her family are still alive and well after the vicious tornado that ripped though that city over the weekend.
My support and positive thoughts also go out to a few more dear friends who are either directly or indirectly, battling the cancer demon right now. Oh how I wish I could take it all away.
To my friends Deborah and Mike....may you be thankful that it was only your material possessions that burned to the ground in your house fire outside of Woodstock this past weekend. As hugely devastating as it must be, at least you are alive and well and are still her to be able to rebuild your future. Thinking of you all and my offer still stands guys. You shall overcome this bump in the road !!
Just to get it off my chest......it appears I may have lost a few friends over the past couple of months due to the fact that I have been unable to devote the time I guess they felt I should be to them. To them, I apologize for not being there I guess. In my own defence.....I would gladly be leading the life of a boring, dull person right now. Unfortunately, there are not enough hours in the day for me lately. I am consumed with helping to get my sister's life sorted out right now as well as trying to find time to deal with my own stuff. As much as I would like to be, I cannot be 5 different places at one time.....so for those who choose to stick by me....please be patient. I'm trying :/
We may have to have Angela go into a Respite facility for up to 90 days until we can figure all this stuff out.She is not going to be happy about that but there is no other choice at this time. Through Cheshire Homes of London, there is about a 4 year waiting list for a unit in St.Thomas that has round the clock "assisted living." We may have to look for a private rental unit that is wheelchair-accessible for her. And gee, where is all the money going to come from to pay for all of this??? Stress level meter increasing by the minute!! lol
Needless to say, it will be a busy week for me and the family. Things will have to happen fast and furious before they boot her out of the hospital.
Happy Birthdays to my dad and sister Shirley, hope you both had a wonderful birthday weekend. I spent the weekend with Faith and one of her friends at the trailer. I have had it up for sale since last year but have asked for it to be taken off the market now because I feel that I am able to enjoy it a little more this year. Last year, I was in a bad place emotionally and my frustration level with my leg and everything else cancer-related was pretty high. I think I've grown to accept the new me a little more this year and thus, able to enjoy the trailer more.
My thoughts and prayers go out to Susie J. who is a dear friend of mine in Joplin. Thankfully her and her family are still alive and well after the vicious tornado that ripped though that city over the weekend.
My support and positive thoughts also go out to a few more dear friends who are either directly or indirectly, battling the cancer demon right now. Oh how I wish I could take it all away.
To my friends Deborah and Mike....may you be thankful that it was only your material possessions that burned to the ground in your house fire outside of Woodstock this past weekend. As hugely devastating as it must be, at least you are alive and well and are still her to be able to rebuild your future. Thinking of you all and my offer still stands guys. You shall overcome this bump in the road !!
Just to get it off my chest......it appears I may have lost a few friends over the past couple of months due to the fact that I have been unable to devote the time I guess they felt I should be to them. To them, I apologize for not being there I guess. In my own defence.....I would gladly be leading the life of a boring, dull person right now. Unfortunately, there are not enough hours in the day for me lately. I am consumed with helping to get my sister's life sorted out right now as well as trying to find time to deal with my own stuff. As much as I would like to be, I cannot be 5 different places at one time.....so for those who choose to stick by me....please be patient. I'm trying :/
Thursday, May 19, 2011
May 19/2011
Well after speaking with Angela's attending physician yesterday, they are sadly pretty confident that Angela's kidneys are shot for life and she will be required to continue with dialysis. On an upside...it has been determined that Angela is NOT diabetic and therefore can adjust her diet accordingly now. She still remains on a renal diet, although I am not sure what all this entails but will be asking the questions on Friday. Angela was quite happy to hear this news.....I'm sure she has orders upon orders of junk food planned out in her mind now. lol
We have a Discharge Planning Meeting this Friday to review Ang's condition both physically and mentally with various departmental members of the hospital staff. I have no other information at this point but I still don't think it will be in the very near future that Angela is actually discharged.Her occupational and physical therapy is at somewhat of a reduced schedule because of the fact that 3 days a week are pretty much a write-off due to dialysis. Between having to be transported to and from London to receive the treatment as well as the after effects of fatigue etc, it is hindering the amount of time that can be devoted toward rehab.
My layman's prognosis for Angela still remains the same as it has been for months. I believe she will need to reside in handicapped accessible housing that provides some type of assisted living. I do not for see Angela as being able to perform a lot of every day activities on her own safely. I have invited Cheshire homes of London to our meeting on Friday to see if perhaps they may have something to offer Angela in the way of assisted living/housing. If anyone out there in my blog world is or has been faced with the same type of challenges, I'd love to hear if you have any possible avenues for us, as a family, to explore.
On a cheerier note....I was asked last night by my best friend to be his Best Man at his upcoming wedding. Of course I said yes, and will be proud and honoured to stand by his side! The actual date is still to be determined, but it looks like this summer sometime! God-willing, I'll stay healthy enough to fulfill my duties! Just one more reason to continue my fight :) :) :)
We have a Discharge Planning Meeting this Friday to review Ang's condition both physically and mentally with various departmental members of the hospital staff. I have no other information at this point but I still don't think it will be in the very near future that Angela is actually discharged.Her occupational and physical therapy is at somewhat of a reduced schedule because of the fact that 3 days a week are pretty much a write-off due to dialysis. Between having to be transported to and from London to receive the treatment as well as the after effects of fatigue etc, it is hindering the amount of time that can be devoted toward rehab.
My layman's prognosis for Angela still remains the same as it has been for months. I believe she will need to reside in handicapped accessible housing that provides some type of assisted living. I do not for see Angela as being able to perform a lot of every day activities on her own safely. I have invited Cheshire homes of London to our meeting on Friday to see if perhaps they may have something to offer Angela in the way of assisted living/housing. If anyone out there in my blog world is or has been faced with the same type of challenges, I'd love to hear if you have any possible avenues for us, as a family, to explore.
On a cheerier note....I was asked last night by my best friend to be his Best Man at his upcoming wedding. Of course I said yes, and will be proud and honoured to stand by his side! The actual date is still to be determined, but it looks like this summer sometime! God-willing, I'll stay healthy enough to fulfill my duties! Just one more reason to continue my fight :) :) :)
Monday, May 16, 2011
May 16/2011
Well here I am....42 days of chemo in a row now. UGH I'm on day 14 of 28 for round 2 right now. Still not convinced that it is doing anything but I can only wait and see I guess. I am at the mercy of conventional medicine.I am now beginning to see why some people give up on the conventional methods of treatment to fight cancer. I am a very "results-oriented" type of person and this waiting game is killing me.
With the assistance of my Doctor, we did some re-arranging and dosage increase/decrease of some meds to see if we could get me sleeping any better than 2-3 hours a night. I guess I am up to around 4 or 5 hours at the present time but if does not get any better, I will quit this new regime they have started and just suck it up. I'm tired of taking a million pills every day to combat this that and the other. Yeah, they are all formulated to fight something, but the side effects are just sometimes not worth it.
On a more positive note, I enjoyed a terrific weekend with Faith and one of her school friends at the trailer. Oh to be a kid again....the rain did not hold those 2 back at all. I truly enjoyed our weekend away and watching them be so carefree. I'm thinking I am in a better place mentally this year and so I hope to be at the trailer more often. Last year I think I was still too frustrated with my bum leg and got frustrated with the confines of being in the trailer. The frustration is still there but I have learned to just live with the "new" me I guess. Enjoy every day and live with no regrets.
Am I scared of my 6-12 month new prognosis....hell yes. There is not a day that goes by, or a new headache that appears, that I think geez, is this it? Is this really the beginning of the end this time?? Life shouldn't be like this....but I guess its a reality check that you, me or any of our loved ones could lose their own battle at any time. Funny story....I had a run-in with my landlord the other week. He'd left me a voicemail about moving my vehicles out of the driveway so that they could FINALLY finish installing a new steel roof on the house. This roof has been a work in progress since late last summer so between having roofing garbage all over my yard, a supply wagon parked in my yard, and just the overall inconvenience of it all, it was really beginning to frustrate me. I pay high dollar rent for this place so I expect things to be done in a timely fashion.Oh, did I mention that I waited over 3 months to get my front door fixed because it would not close and when ever a wind came along, it would blow it open?? lol Needless to say, I got tired of waiting and fixed it myself. Sad part is, it was a very easy fix. It boiled down to being a principle is all. Anyways, back to the roof story......to make a long story short, my landlord shows up at my place early on a Monday morning....tries to rip a strip off of me for not having my vehicles moved at his whim, and proceeds to tell me that I will be a "former" tenant if I don't do what is expected of me by him. In the end I actually told him to f*#k off and slammed the door in his face. This guy is one of 2 brothers who have more money than God and without giving names, sold the local landfill to the City of Toronto for $220 million dollars!! So yeah, money was not an issue here.
I guess the moral of my story is that before you go shooting your mouth off, just remember that that person who did not jump, or give you your expected reply, may be fighting a battle of their own. Having a vehicle moved took me all of 2 minutes and the bricklayers were not even bothered at all. Don't sweat the small stuff ;)
Angela is still on the mend in Continuing Care at the St.Thomas hospital. I see some of the old Angela surfacing again....and without going in to details, may not be a good thing. Angela is on a STRICT diet, so please, even though it is totally understood that it is all with the best of intentions, do not bring any food up or retrieve any of her "requests", without going through the hospital Dietitian first. I still see months of rehab for her before she can even be considered competent of living in the community, either alone or with assisted living. Fingers crossed that all remains positive for her and that she does not make any poor choices regarding her new lease on life.
My thoughts and prayers go out to all that suffering with cancer right now, or have a close loved one who is suffering. You are all in my thoughts daily and we will beat this thing ;)
Ed
With the assistance of my Doctor, we did some re-arranging and dosage increase/decrease of some meds to see if we could get me sleeping any better than 2-3 hours a night. I guess I am up to around 4 or 5 hours at the present time but if does not get any better, I will quit this new regime they have started and just suck it up. I'm tired of taking a million pills every day to combat this that and the other. Yeah, they are all formulated to fight something, but the side effects are just sometimes not worth it.
On a more positive note, I enjoyed a terrific weekend with Faith and one of her school friends at the trailer. Oh to be a kid again....the rain did not hold those 2 back at all. I truly enjoyed our weekend away and watching them be so carefree. I'm thinking I am in a better place mentally this year and so I hope to be at the trailer more often. Last year I think I was still too frustrated with my bum leg and got frustrated with the confines of being in the trailer. The frustration is still there but I have learned to just live with the "new" me I guess. Enjoy every day and live with no regrets.
Am I scared of my 6-12 month new prognosis....hell yes. There is not a day that goes by, or a new headache that appears, that I think geez, is this it? Is this really the beginning of the end this time?? Life shouldn't be like this....but I guess its a reality check that you, me or any of our loved ones could lose their own battle at any time. Funny story....I had a run-in with my landlord the other week. He'd left me a voicemail about moving my vehicles out of the driveway so that they could FINALLY finish installing a new steel roof on the house. This roof has been a work in progress since late last summer so between having roofing garbage all over my yard, a supply wagon parked in my yard, and just the overall inconvenience of it all, it was really beginning to frustrate me. I pay high dollar rent for this place so I expect things to be done in a timely fashion.Oh, did I mention that I waited over 3 months to get my front door fixed because it would not close and when ever a wind came along, it would blow it open?? lol Needless to say, I got tired of waiting and fixed it myself. Sad part is, it was a very easy fix. It boiled down to being a principle is all. Anyways, back to the roof story......to make a long story short, my landlord shows up at my place early on a Monday morning....tries to rip a strip off of me for not having my vehicles moved at his whim, and proceeds to tell me that I will be a "former" tenant if I don't do what is expected of me by him. In the end I actually told him to f*#k off and slammed the door in his face. This guy is one of 2 brothers who have more money than God and without giving names, sold the local landfill to the City of Toronto for $220 million dollars!! So yeah, money was not an issue here.
I guess the moral of my story is that before you go shooting your mouth off, just remember that that person who did not jump, or give you your expected reply, may be fighting a battle of their own. Having a vehicle moved took me all of 2 minutes and the bricklayers were not even bothered at all. Don't sweat the small stuff ;)
Angela is still on the mend in Continuing Care at the St.Thomas hospital. I see some of the old Angela surfacing again....and without going in to details, may not be a good thing. Angela is on a STRICT diet, so please, even though it is totally understood that it is all with the best of intentions, do not bring any food up or retrieve any of her "requests", without going through the hospital Dietitian first. I still see months of rehab for her before she can even be considered competent of living in the community, either alone or with assisted living. Fingers crossed that all remains positive for her and that she does not make any poor choices regarding her new lease on life.
My thoughts and prayers go out to all that suffering with cancer right now, or have a close loved one who is suffering. You are all in my thoughts daily and we will beat this thing ;)
Ed
Friday, May 6, 2011
May 6/11
Me and sleep are still bitter enemies. I think I managed 2 hrs sleep tonight. This is just getting silly. And with the news of a possible 3rd round of chemo and steroids, I don't see this changing in the near future. UGH "Some days its just not worth chewing through the straps!" lol
Anyways, onto Angela.......Ang has now been moved to Continuing Care at the St.Thomas Hospital. What this means is that she will now receive better rehabilitative care in a setting that is designed to test her abilities to return to a "normal" life and routine. She will be tested on her ability to become mobile, to function in a home-setting, as well as a number of other things. At this point, I feel Angela still has a long road ahead of her. Her short-term memory is very poor, she is probably going to remain on dialysis for a lifetime (her kidneys have shown no sign of function in over 2.5 months) and there is a vast amount of mental confusion still apparent. She can be carrying on a semi-normal conversation for 5 minutes, then slips into an unknown realm of her own skewed sense of reality. We are all so very saddened by all of this. It has taken a tremendous toll on the family and the stressors continue to pop up almost daily. Even though Angela and I have had a strained relationship over the years, I would give my right arm for her to be home and on the mend without the physical and mental impairments I fear she is going to be left with. It just sucks! A family vacation is soooooooo needed.
Feeling pretty emotional right now...tears rolling down my face as I write. Between Angela's situation, the thought of her requiring permanent care for the rest of her life, the emotional pain that the family is suffering right now and then there is my situation. As positive and tough as I can be throughout all of this....I still have that gnawing feeling in my mind that this is the beginning of the end. Almost since day 1 of cancer, I guesstimated I'd last 5 years total.I'm into year 3 and I just hope and pray for a good quality of life for whatever time I have left. The thought of leaving my beautiful Faith behind just kills me. I've only had 9 years with her and knowing our time together is going to be limited, is like a dagger through my heart. GODDAMNSONOFABITCH!!!!!!!!
I don't usually get too emotionally explicit on here but its getting harder and harder to keep the feelings in. Some days (or early mornings in this case) I just can't be the tough guy. Its probably a healthy thing to do anyways....to let it out. I've never been good at doing it in front of people so I guess this the next best thing for me. When you are going through something like this and you hear (especially from our younger generation) the "life problems" that they complain about and make a huge deal over.......I'd just like to welcome them to walk in my shoes, or someone else's, who is going through this same crap right now.
Live your life to the fullest today and with no regrets. God never promised you tomorrow!!!!!!! Be a positive contributing member of society; Respect your parents; Tell your kids how much you love them; We all have a past, but only YOU can make your future. Lifes tough....wear a helmet! ~sorry, these are just little rants that have always stuck in my head~
Ok, time to put my Teflon suit back on and ......carry on as if I were normal!! :)
Love you all!
Ed
Anyways, onto Angela.......Ang has now been moved to Continuing Care at the St.Thomas Hospital. What this means is that she will now receive better rehabilitative care in a setting that is designed to test her abilities to return to a "normal" life and routine. She will be tested on her ability to become mobile, to function in a home-setting, as well as a number of other things. At this point, I feel Angela still has a long road ahead of her. Her short-term memory is very poor, she is probably going to remain on dialysis for a lifetime (her kidneys have shown no sign of function in over 2.5 months) and there is a vast amount of mental confusion still apparent. She can be carrying on a semi-normal conversation for 5 minutes, then slips into an unknown realm of her own skewed sense of reality. We are all so very saddened by all of this. It has taken a tremendous toll on the family and the stressors continue to pop up almost daily. Even though Angela and I have had a strained relationship over the years, I would give my right arm for her to be home and on the mend without the physical and mental impairments I fear she is going to be left with. It just sucks! A family vacation is soooooooo needed.
Feeling pretty emotional right now...tears rolling down my face as I write. Between Angela's situation, the thought of her requiring permanent care for the rest of her life, the emotional pain that the family is suffering right now and then there is my situation. As positive and tough as I can be throughout all of this....I still have that gnawing feeling in my mind that this is the beginning of the end. Almost since day 1 of cancer, I guesstimated I'd last 5 years total.I'm into year 3 and I just hope and pray for a good quality of life for whatever time I have left. The thought of leaving my beautiful Faith behind just kills me. I've only had 9 years with her and knowing our time together is going to be limited, is like a dagger through my heart. GODDAMNSONOFABITCH!!!!!!!!
I don't usually get too emotionally explicit on here but its getting harder and harder to keep the feelings in. Some days (or early mornings in this case) I just can't be the tough guy. Its probably a healthy thing to do anyways....to let it out. I've never been good at doing it in front of people so I guess this the next best thing for me. When you are going through something like this and you hear (especially from our younger generation) the "life problems" that they complain about and make a huge deal over.......I'd just like to welcome them to walk in my shoes, or someone else's, who is going through this same crap right now.
Live your life to the fullest today and with no regrets. God never promised you tomorrow!!!!!!! Be a positive contributing member of society; Respect your parents; Tell your kids how much you love them; We all have a past, but only YOU can make your future. Lifes tough....wear a helmet! ~sorry, these are just little rants that have always stuck in my head~
Ok, time to put my Teflon suit back on and ......carry on as if I were normal!! :)
Love you all!
Ed
Wednesday, May 4, 2011
May 4/11
Soooooooooooo....I had my Cancer Clinic appointment yesterday.It wass screwed from the start! They didn't have me booked in so I think I got bumped down the list in order of being seen. When they gaveme my blood req. forms, they ended up belonging to some lady and not me. So my 1:30pm appt didn't actually take place until around 3:45pm.
So the gist of it is that they started me on yet another round of chemo. Another 28 days straight. Possibly another 28 days after that. My MRI is still scheduled for June 20, which I don't agree with, but according to my Oncologist, that is considered "normal" protocal. I guess this far into the game, they don't consider it feasible to do another MRI earlier. So I shall play the waiting game until June....wondering minute by minute, whether or not the chemo is even working, or if the tumours are still growing in my head. Doc MacDonald told me that it would take a minimum of a month of chemo to see any effects on the tumours. He also told me just to be very weary of any physical changes to my body, such as vision, left side weakness etc. (telltale signs of tumour growth I suppose.)
Coming out of there, I felt a little dejected and was having one of those "throw your hands up in the air" moments and just wanted to say to hell with it all. Then I guess the stubborn Ed kicked back into gear and told myself to quit whining and get on with the game. I have an amazing daughter to live for, as well as a wonderful circle of family and friends who are pulling for me. Game on bastard cancer.....game on!
Medically, I am still only managing 3-4 hrs sleep a night. I thought I'd have more "crash" nights, but in the first 28 days, I only crashed and burned once. I seem to have a higher energy level while on chemo. I'm sure that is a side effect of both the chemo and the steroid medication. Speaking of steroids, although I did refill my prescription, for this chemo round, I am going to avoid them as much as possible. I also am not going to take the anti-nauseant and see how things go. I'm tired of living on all these pills. The steroids, I may not be able to avoid for too long. Last night and this morning, I felt/feel a further weakness in my left arm. Feels like a wet noodle. If it gets unbearable, I will return to the steroids I guess. Headaches have been a constant the past few days too, so I will monitor all of this and adjust meds accordingly for now. Sad but true, I feel I am my own best Doctor right now.
Still keeping very busy with Angela and her son. We are waiting for a bed to open up in Continuing Care at the hospital so Angela can get to work with rehab and such. In my opinion, I don't see her leaving the hospital in the near future due to both lack of physical strength and some memory issues. Hopefully both will improve with time.
On a lighter note, Faith and I spent our first weekend at Happy Hills this past weekend. She brought along a friend and had a hoot. My bestest bud Al and his girlfriend Kar came out to hlp me with opening the trailer for the season. Thanks guys :) I am going to try spend a lot more time there this summer (God willing) to enjoy the serenity and time away from the world of cancer. Last year I was not in a good place (with myself) to enjoy it.
Tomorrow is Steve Phillips birthday.Sadly we lost him to cancer last September, but not without a fight....Get that margarita ready for you and Kathy bud ;) I also heard through the grapevine that Scream for a Cure 2 is in the works!! Can't wait to be a small part of that again.
My next scheduled Cancer Clinic appt is May 31 at 1:30pm.
Thanks for all your support during this "stuff". You are all very special people to me :)
So the gist of it is that they started me on yet another round of chemo. Another 28 days straight. Possibly another 28 days after that. My MRI is still scheduled for June 20, which I don't agree with, but according to my Oncologist, that is considered "normal" protocal. I guess this far into the game, they don't consider it feasible to do another MRI earlier. So I shall play the waiting game until June....wondering minute by minute, whether or not the chemo is even working, or if the tumours are still growing in my head. Doc MacDonald told me that it would take a minimum of a month of chemo to see any effects on the tumours. He also told me just to be very weary of any physical changes to my body, such as vision, left side weakness etc. (telltale signs of tumour growth I suppose.)
Coming out of there, I felt a little dejected and was having one of those "throw your hands up in the air" moments and just wanted to say to hell with it all. Then I guess the stubborn Ed kicked back into gear and told myself to quit whining and get on with the game. I have an amazing daughter to live for, as well as a wonderful circle of family and friends who are pulling for me. Game on bastard cancer.....game on!
Medically, I am still only managing 3-4 hrs sleep a night. I thought I'd have more "crash" nights, but in the first 28 days, I only crashed and burned once. I seem to have a higher energy level while on chemo. I'm sure that is a side effect of both the chemo and the steroid medication. Speaking of steroids, although I did refill my prescription, for this chemo round, I am going to avoid them as much as possible. I also am not going to take the anti-nauseant and see how things go. I'm tired of living on all these pills. The steroids, I may not be able to avoid for too long. Last night and this morning, I felt/feel a further weakness in my left arm. Feels like a wet noodle. If it gets unbearable, I will return to the steroids I guess. Headaches have been a constant the past few days too, so I will monitor all of this and adjust meds accordingly for now. Sad but true, I feel I am my own best Doctor right now.
Still keeping very busy with Angela and her son. We are waiting for a bed to open up in Continuing Care at the hospital so Angela can get to work with rehab and such. In my opinion, I don't see her leaving the hospital in the near future due to both lack of physical strength and some memory issues. Hopefully both will improve with time.
On a lighter note, Faith and I spent our first weekend at Happy Hills this past weekend. She brought along a friend and had a hoot. My bestest bud Al and his girlfriend Kar came out to hlp me with opening the trailer for the season. Thanks guys :) I am going to try spend a lot more time there this summer (God willing) to enjoy the serenity and time away from the world of cancer. Last year I was not in a good place (with myself) to enjoy it.
Tomorrow is Steve Phillips birthday.Sadly we lost him to cancer last September, but not without a fight....Get that margarita ready for you and Kathy bud ;) I also heard through the grapevine that Scream for a Cure 2 is in the works!! Can't wait to be a small part of that again.
My next scheduled Cancer Clinic appt is May 31 at 1:30pm.
Thanks for all your support during this "stuff". You are all very special people to me :)
Saturday, April 30, 2011
April 30/2011
Well here I am, at day 26 of 28 on chemotherapy. I feel the effects beginning to take its toll slowly on me now. I still feel like I have tons of energy throughout the day, but my body is starting to tell me to slow the train down! My wipe-out in the tub the other night was probably a good indicator that I need to dial it back a bit. My balance is one of a 2am drunk most days....probably shouldn't do the bath tub on my own but its my stubborn qualities rising to the surface again.
Still not sleeping worth a damn but I have cut back on my steroid (under my own advice) and hopefully that will help. Managing between 3 and 4 hours a night still. After this round of chemo, I have a follow up appt on May 3rd. From my phone conversation with the nurse, it SOUNDS like they may want to do another 2-28 day rounds of chemo and then not give me an MRI until June 20th. To me, that just sounds ridiculous. If I look at the timeline etc....Last good scan...Oct/10...2 tumours noticed in Feb/11 scan...another scan Mar/11 with confirmation that they had almost doubled in size in a month. Now the chemo...which wasn't helpful last time....then more chemo...and wait 3 months before we scan the head again????? Does not make sense to me. My head might blow off by then! lol I will certainly be discussing this with my Doc next week.
On a positive note, Angela continues to improve on a daily basis. They are putting her into Continuing Care as soon as possible to begin the re-integration into daily living. She has a road ahead of her but has by far exceeded any of our expectations, much to our happiness :) Ang will still need dialysis at least 3 times a week in London and that may be for life. Myself and the family are still closely involved with a Social Worker at the hospital to ensure that Angela continues to progress and attain the best quality of life possible. Oh, as a side note...Angela has a phone now so be prepared for calls!! lol Hope you all have a free hour ;)
All in all, Angela is doing better. I just pray to the Big Guy everyday, that she will remember where she has been over these past few months, and begin to live a fulfilling life once she is back in the land of the living :)
Thank you again and again to all that have supported Angela and our family during this very trying time.
Sincerely,
Ed
Still not sleeping worth a damn but I have cut back on my steroid (under my own advice) and hopefully that will help. Managing between 3 and 4 hours a night still. After this round of chemo, I have a follow up appt on May 3rd. From my phone conversation with the nurse, it SOUNDS like they may want to do another 2-28 day rounds of chemo and then not give me an MRI until June 20th. To me, that just sounds ridiculous. If I look at the timeline etc....Last good scan...Oct/10...2 tumours noticed in Feb/11 scan...another scan Mar/11 with confirmation that they had almost doubled in size in a month. Now the chemo...which wasn't helpful last time....then more chemo...and wait 3 months before we scan the head again????? Does not make sense to me. My head might blow off by then! lol I will certainly be discussing this with my Doc next week.
On a positive note, Angela continues to improve on a daily basis. They are putting her into Continuing Care as soon as possible to begin the re-integration into daily living. She has a road ahead of her but has by far exceeded any of our expectations, much to our happiness :) Ang will still need dialysis at least 3 times a week in London and that may be for life. Myself and the family are still closely involved with a Social Worker at the hospital to ensure that Angela continues to progress and attain the best quality of life possible. Oh, as a side note...Angela has a phone now so be prepared for calls!! lol Hope you all have a free hour ;)
All in all, Angela is doing better. I just pray to the Big Guy everyday, that she will remember where she has been over these past few months, and begin to live a fulfilling life once she is back in the land of the living :)
Thank you again and again to all that have supported Angela and our family during this very trying time.
Sincerely,
Ed
Sunday, April 24, 2011
Easter Sunday Apr. 24/11
Had a good visit with Angela this evening. She has certainly got her appetite back and is officially off the feeding bag now! Physically, Angela still has quite a ways to go. Hopefully the hospital will begin a Physio plan for her on Tuesday. Her muscle mass has obviously taken quite a beating so, like I told Angela, her really needs to adhere to the regimen they set her up on to speed up her recovery in that area.
Mentally, Ang seems to show memory improvement in a lot of areas too but according to some info I was told, Angela will be required eventually to be tested to see if she can accomplish everyday household duties such as cooking, cleaning etc.Her current residence is a 2 storey with no facilities on the main floor, so once we establish what Angela's capabilities actually are...we will then review the options at that point. I told Angela that her main focus needs to be on re-establishing a "life" and all the other stuff will fall into place in due time. Visitors are more than welcome now. Angela seems to cope pretty good with visitors. I am still asking that the conversations be kept simple....she does not need to hear of any gossip or other subjects of conversation that may get her agitated. I am sure that Ang's brain is still going through a healing process so lets not mess that up!
Angela is also on a strict calorie intake regime, so please refrain from bringing in any "treats" at this point. (unless its peanut butter cookies of course) heh heh If anyone has any questions prior to visiting, please do not hesitate to contact any family member, including myself. Ang is on 5TH Floor Room 509.
Thanks for your support with everything :)
Ed
Mentally, Ang seems to show memory improvement in a lot of areas too but according to some info I was told, Angela will be required eventually to be tested to see if she can accomplish everyday household duties such as cooking, cleaning etc.Her current residence is a 2 storey with no facilities on the main floor, so once we establish what Angela's capabilities actually are...we will then review the options at that point. I told Angela that her main focus needs to be on re-establishing a "life" and all the other stuff will fall into place in due time. Visitors are more than welcome now. Angela seems to cope pretty good with visitors. I am still asking that the conversations be kept simple....she does not need to hear of any gossip or other subjects of conversation that may get her agitated. I am sure that Ang's brain is still going through a healing process so lets not mess that up!
Angela is also on a strict calorie intake regime, so please refrain from bringing in any "treats" at this point. (unless its peanut butter cookies of course) heh heh If anyone has any questions prior to visiting, please do not hesitate to contact any family member, including myself. Ang is on 5TH Floor Room 509.
Thanks for your support with everything :)
Ed
Thursday, April 21, 2011
April 21/11
Some good news today! Angela has been transferred back to the St.Thomas hospital to continue with her recovery. The frustrating part is now we have to through all the transfer of information from hospital to hospital. There has already been incidents this evening that could have become a problem because the Nurse did not bother to read Angela's medical history prior to starting her intake. Grrrrrrrr I have provided a minimum of 5 copies to University Hospital regarding important medical information already.....looks like I will have to do the same in St.Thomas. Its almost like they think Angela just came in off the street rather than having just spent 64 days in ICU in London. I have no time or patience for that type of incompetency of lack of compassion in your chosen field.
If anyone is planning on visiting Angela, please allow her a few days to adjust to her new surroundings. She still has some confusion going on and I think it is in her best interest to only have family and close friends visiting until after the Easter weekend. If you truly need to see her prior to that, please contact a family member first. Thanks in advance.
If anyone is planning on visiting Angela, please allow her a few days to adjust to her new surroundings. She still has some confusion going on and I think it is in her best interest to only have family and close friends visiting until after the Easter weekend. If you truly need to see her prior to that, please contact a family member first. Thanks in advance.
Tuesday, April 19, 2011
Angela Visit Apr 19/11
Took Angela's eldest son Brandon up today and we both visited with her. She was in very good spirits today and seemed to be eating some more solid food. I had a long talk with the Social Worker regarding after-care etc so I think I will be a busy boy for a while! Brandon took his mom down to the lobby Tim Hortons for a tea and a cookie and I think Angela has developed a passion for peanut butter cookies. lol Although, I am sure a bale of hay would taste good after 50+ days of no real food!! If Angela continues to improve, there is a POSSIBILITY of her being transferred back to the St.Thomas hospital. That would be awesome for everyone :)
I still sense the confusion in some of Angela's thoughts. Hoping that this will just continue to improve as she rids herself of the cobwebs that surely began to surround her world after such a lengthy hospital stay. The only disadvantage of Angela coming back to St.Thomas will be the dialysis treatments. She will have to be transported back and forth for those at least 3 times a week. I believe our local M.P. Steve Peters was attempting to gather some stats etc of the number of people who would benefit from having a Dialysis Unit here in Elgin County. Feel free to voice your opinion to him ;)
Overall, Angela has improved tenfold from her previous state. Our family is ecstatic with her progress and cannot wait for her to me "home".
I still sense the confusion in some of Angela's thoughts. Hoping that this will just continue to improve as she rids herself of the cobwebs that surely began to surround her world after such a lengthy hospital stay. The only disadvantage of Angela coming back to St.Thomas will be the dialysis treatments. She will have to be transported back and forth for those at least 3 times a week. I believe our local M.P. Steve Peters was attempting to gather some stats etc of the number of people who would benefit from having a Dialysis Unit here in Elgin County. Feel free to voice your opinion to him ;)
Overall, Angela has improved tenfold from her previous state. Our family is ecstatic with her progress and cannot wait for her to me "home".
April 19/11 Day 15 of chemo
Hi all:
Well I am officially over the halfway point with my first round of chemo. The effects have mostly been the inability to sleep for more than 3-4 hours at a time. And to boot, I am not even napping during the day. Damned drugs....I swear they'll kill me before the cancer does. Oh well, they say you can sleep for as long as you want when you're dead (insert snicker here)
It is a very odd time this round. I find that I am feverishly working almost around the clock trying to help people out in any way I can. I'm not sure if this is because I think this is the last round for me, or if its just a change in thinking and wanting to keep myself occupied so I do not dwell on the "other". I'm gonna sign up for the latter I think ;)
So after Chemo ends on May 2nd, I have a follow-up at the Cancer Clinic and we will determine the next course of action. Sad part is.....they have not even given me a date for a follow-up MRI yet to check on the progress of the tumours. Maybe this appt is just to "rub my back and tell me that all is gonna be ok" !!! Buggers!
I totally appreciate our Health System but come on....bringing me back to the clinic without any MRI prior to that??? Whats the purpose in that??
On a better note.....Angela is still improving. She is eating a bit better but is still on dialysis. Personally, I think this dialysis is going to be a long-term thing. I'm going to try to get to the hospital today to see her as well as talk to the Social Worker about after-care etc. We are not sure at this point if Angela can even live on her own or will require some type of facility care.....still so many unknowns. She is still experiencing a lot of confusion with her thoughts etc. We as a family, seem to have to be constantly reminding the Doctors and staff of this. At this point, Angela is really incapable of grasping a lot of events and other such things. Hopefully this improves with time.
With love and gratitude from the whole family to all that have supported us.
Ed
Well I am officially over the halfway point with my first round of chemo. The effects have mostly been the inability to sleep for more than 3-4 hours at a time. And to boot, I am not even napping during the day. Damned drugs....I swear they'll kill me before the cancer does. Oh well, they say you can sleep for as long as you want when you're dead (insert snicker here)
It is a very odd time this round. I find that I am feverishly working almost around the clock trying to help people out in any way I can. I'm not sure if this is because I think this is the last round for me, or if its just a change in thinking and wanting to keep myself occupied so I do not dwell on the "other". I'm gonna sign up for the latter I think ;)
So after Chemo ends on May 2nd, I have a follow-up at the Cancer Clinic and we will determine the next course of action. Sad part is.....they have not even given me a date for a follow-up MRI yet to check on the progress of the tumours. Maybe this appt is just to "rub my back and tell me that all is gonna be ok" !!! Buggers!
I totally appreciate our Health System but come on....bringing me back to the clinic without any MRI prior to that??? Whats the purpose in that??
On a better note.....Angela is still improving. She is eating a bit better but is still on dialysis. Personally, I think this dialysis is going to be a long-term thing. I'm going to try to get to the hospital today to see her as well as talk to the Social Worker about after-care etc. We are not sure at this point if Angela can even live on her own or will require some type of facility care.....still so many unknowns. She is still experiencing a lot of confusion with her thoughts etc. We as a family, seem to have to be constantly reminding the Doctors and staff of this. At this point, Angela is really incapable of grasping a lot of events and other such things. Hopefully this improves with time.
With love and gratitude from the whole family to all that have supported us.
Ed
Friday, April 15, 2011
Sleep?
Sleep, oh sleep.....where art tho?? Here we go again. The steroids I am taking for brain swelling/headaches are certainly up to their old tricks again. They do not allow me to sleep very long. I've ran myself ragged with working ang keeping busy throughout the day in hope that I'd be able to get a good solid sleep but nope, not happening.
Late yesterday afternoon, Myself, my precious daughter Faith, and Jacqui went to an information session at the Cancer Clinic. It was designed for teaching kids about "When a Parent has Cancer". They split the kids into appropriate age groups and they were shown a video and had a gab session with the councillor. The parents were taken into another group and shown the same video and had an open Q&A type of meeting afterward. I highly reccommend it for the kids and spouses of someone fighting this disease. Admittedly, I cried when I was watching the video. It was so hard to listen to these kids talking about their feelings on it. WOW
Physically, I am feeling out of sorts with all this chemo medication and stuff again. My poor body does not know what it wants to do anymore. My appetite is poor, my energy level is high throughout the day....and yet I cannot sleep for more than 5 hours. Crazy stuff!! Today is day 11 of chemo....only 17 more to go! (UGH)
Angela has been moved to the floor from ICU now. Unfortuately I did not get to speak to any of my family yesterday, but I guess no news is good news.I am still working with her son Brandon, trying to assist him on his life path. Hopefully there will be a shining light at the end of these long dark tunnels I seem to be peering down into as of late.
To my friends that are currently going through this dispicable battle of cancer, my thoughts are ALWAYS with you....and to my friends that have passed....you will never be forgotten.
Ed
Late yesterday afternoon, Myself, my precious daughter Faith, and Jacqui went to an information session at the Cancer Clinic. It was designed for teaching kids about "When a Parent has Cancer". They split the kids into appropriate age groups and they were shown a video and had a gab session with the councillor. The parents were taken into another group and shown the same video and had an open Q&A type of meeting afterward. I highly reccommend it for the kids and spouses of someone fighting this disease. Admittedly, I cried when I was watching the video. It was so hard to listen to these kids talking about their feelings on it. WOW
Physically, I am feeling out of sorts with all this chemo medication and stuff again. My poor body does not know what it wants to do anymore. My appetite is poor, my energy level is high throughout the day....and yet I cannot sleep for more than 5 hours. Crazy stuff!! Today is day 11 of chemo....only 17 more to go! (UGH)
Angela has been moved to the floor from ICU now. Unfortuately I did not get to speak to any of my family yesterday, but I guess no news is good news.I am still working with her son Brandon, trying to assist him on his life path. Hopefully there will be a shining light at the end of these long dark tunnels I seem to be peering down into as of late.
To my friends that are currently going through this dispicable battle of cancer, my thoughts are ALWAYS with you....and to my friends that have passed....you will never be forgotten.
Ed
Wednesday, April 13, 2011
Angela Apr 13/11 Day 56
Just another quick update on Angela. She was supposed to me moved out of ICU a day or 2 ago but had a minor issue with sodium, potassium and electrolyte levels so they kept her there for more monitoring. Dialysis seemed to have cleared up the issues. And last I heard yesterday, they we just now waiting for an available bed to open up.
The stories about hospital bed shortages are soooo true. There are people in the E.R. hallways waiting for beds. Very sad!
As for me......headaches still seem to be a minor issue and the steroids I have began taking are not allowing me to sleep very much. Oh well, like the saying goes...."you can sleep when you're dead". heh heh
Take care
The stories about hospital bed shortages are soooo true. There are people in the E.R. hallways waiting for beds. Very sad!
As for me......headaches still seem to be a minor issue and the steroids I have began taking are not allowing me to sleep very much. Oh well, like the saying goes...."you can sleep when you're dead". heh heh
Take care
Monday, April 11, 2011
Angela Apr 11/11 Day 54....hopefully the last!
Hi:
I will keep this short and sweet as I am dawg tired. I believe Angela was getting moved out of ICU tonight and was going to the 4th floor. I think she is breathing on her own now too. YAY Miracles do happen. Her swallow test went well and she is slowly being introduced to "normal" foods. Unfortunately, she is still on dialysis. I will update more as I know (or am at least able to remember!) lol
G'nite world!
I will keep this short and sweet as I am dawg tired. I believe Angela was getting moved out of ICU tonight and was going to the 4th floor. I think she is breathing on her own now too. YAY Miracles do happen. Her swallow test went well and she is slowly being introduced to "normal" foods. Unfortunately, she is still on dialysis. I will update more as I know (or am at least able to remember!) lol
G'nite world!
Sunday, April 10, 2011
April 10/2011 Chemo Day 6
Well the chemo is certainly kicking in. The side effects are raising thier ugly heads. Constantly tired, guts turning and the overall feeling of "blah". Add to that the 2 focal seizures I've had in 3 days.....what a party!
Since the seizures are happening, I've decided to start taking the steroid this morning that was prescribed for me. I was hoping to keep away from it by just using over the counter meds, but I guess not. The steroid will hopefully reduce the brain swelling, and in turn, hopefully reduce or eliminate any further seizures. Not to mention, I do not want to have my license pulled again, so I will just endure the rotten side effects of all these new meds.
Thank you to all of my cheering squad. With any luck, I'll see you at the finish line :)
Ed
Since the seizures are happening, I've decided to start taking the steroid this morning that was prescribed for me. I was hoping to keep away from it by just using over the counter meds, but I guess not. The steroid will hopefully reduce the brain swelling, and in turn, hopefully reduce or eliminate any further seizures. Not to mention, I do not want to have my license pulled again, so I will just endure the rotten side effects of all these new meds.
Thank you to all of my cheering squad. With any luck, I'll see you at the finish line :)
Ed
Angela Apr 10/2011 Day 53
Good morning
Good news with Angela, there is a possibility she may be leaving the ICU as soon as Monday!! Angela has made progress in leaps and bounds over the past week. It is her youngest son's birthday today so we are taking him to see Angela and then a little get-together at Shirley's house.
There still seems to be some confusion with certain things but hopefully, once out of the ICU environment, she can shake those cobwebs off and get back to living!!
Good news with Angela, there is a possibility she may be leaving the ICU as soon as Monday!! Angela has made progress in leaps and bounds over the past week. It is her youngest son's birthday today so we are taking him to see Angela and then a little get-together at Shirley's house.
There still seems to be some confusion with certain things but hopefully, once out of the ICU environment, she can shake those cobwebs off and get back to living!!
Friday, April 8, 2011
Here we go again.........
Now that Angela is on the mend, I feel the time is right to update you all on my situation......
I have known since Feb 28th that unfortunately, I have not one, but two cancerous brain tumours growing again.I chose to keep this quiet and only share the information with a few close friends until my Oncologist came up with a treatment for me. I did not want to burden the family with MORE bad news during the crisis with Angela but now that I have a treatment plan and the side effects are becoming more apparent, I felt last night was the best time (like there is a best time!) to let the family know and now, the rest of my circle of friends.
A few months ago, I noticed my usual morning headaches were lasting longer, even after take some pain relief medication for them. This has continued and gradually the headaches have become 24/7.
I had a brain scan in late October of last year which came back clean. My next scan was in early February of this year and it showed two growths. One was at the base of where they removed the last tumour and the second, larger one, is quite deep in the brain. So with this news, we did another scan in early March with a different type of contrast dye to confirm whether or not they were in fact tumours. Unfortunately, the test came back positive for brain tumours. ( There was a possibility that the growths could have been benign and/or scar tissue)
The results of the February scan showed the deep tumour to be 1.7cm and the smaller tumour was barely noticeable. After the March scan, the tumours had both grown significantly. The deep tumour had grown to 2.6cm and the smaller one had now grown to 1.6cm. With the results showing that both tumours were acting aggressively, we had to come up with a plan. There were 2 choices really.........surgery or chemo. After discussion with my Doc, it has been deemed that surgery will only be done as a last resort due to the depth of the one tumour. He had consulted with my previous surgeon at University Hospital and he said that with the depth of the tumour, just getting at it without causing more damage (i.e. total left side paralysis and/or blindness) was extremely risky.
With that being said, I have opted to go through chemo for 28 days using the oral chemo I had last time (Temodal). It didn't really work last time, but it is the best on the market and who knows, maybe my body chemistry has changed and will allow it to do the fighting this time. After the 28 days of chemo, I will follow up with the Cancer Clinic and have another MRI shortly after to see if the chemo is doing the job or not. There are other chemo treatments out there that I can try after this, although they have not had the success rate that Temodol has.
I am also to have to resign to the fact soon I think, that I will have to start taking the steroid I was prescribed also. I hate the side effects of the steroids but I guess if the brain swelling continues, I'll have no choice. So if I'm a grouchy bear over the next while, its due to the steroids and chemo :/
I asked my Oncologist what his true thoughts were on my prognosis now, given that the tumours are back. His words to me were...."well with any luck, hopefully we can keep these at bay for 6 months to a year. I obviously will take this information with a grain of salt. I beat the odds last time, and it is my intention to do it again. My biggest fear is that I am now fighting 2 tumours as opposed to 1 like last time.
I will fight the fight as I did before....but with even more determination in memory of the close friends I have lost to the cancer battle over the past couple of years.
PS: CANCER SUX!
Ed
I have known since Feb 28th that unfortunately, I have not one, but two cancerous brain tumours growing again.I chose to keep this quiet and only share the information with a few close friends until my Oncologist came up with a treatment for me. I did not want to burden the family with MORE bad news during the crisis with Angela but now that I have a treatment plan and the side effects are becoming more apparent, I felt last night was the best time (like there is a best time!) to let the family know and now, the rest of my circle of friends.
A few months ago, I noticed my usual morning headaches were lasting longer, even after take some pain relief medication for them. This has continued and gradually the headaches have become 24/7.
I had a brain scan in late October of last year which came back clean. My next scan was in early February of this year and it showed two growths. One was at the base of where they removed the last tumour and the second, larger one, is quite deep in the brain. So with this news, we did another scan in early March with a different type of contrast dye to confirm whether or not they were in fact tumours. Unfortunately, the test came back positive for brain tumours. ( There was a possibility that the growths could have been benign and/or scar tissue)
The results of the February scan showed the deep tumour to be 1.7cm and the smaller tumour was barely noticeable. After the March scan, the tumours had both grown significantly. The deep tumour had grown to 2.6cm and the smaller one had now grown to 1.6cm. With the results showing that both tumours were acting aggressively, we had to come up with a plan. There were 2 choices really.........surgery or chemo. After discussion with my Doc, it has been deemed that surgery will only be done as a last resort due to the depth of the one tumour. He had consulted with my previous surgeon at University Hospital and he said that with the depth of the tumour, just getting at it without causing more damage (i.e. total left side paralysis and/or blindness) was extremely risky.
With that being said, I have opted to go through chemo for 28 days using the oral chemo I had last time (Temodal). It didn't really work last time, but it is the best on the market and who knows, maybe my body chemistry has changed and will allow it to do the fighting this time. After the 28 days of chemo, I will follow up with the Cancer Clinic and have another MRI shortly after to see if the chemo is doing the job or not. There are other chemo treatments out there that I can try after this, although they have not had the success rate that Temodol has.
I am also to have to resign to the fact soon I think, that I will have to start taking the steroid I was prescribed also. I hate the side effects of the steroids but I guess if the brain swelling continues, I'll have no choice. So if I'm a grouchy bear over the next while, its due to the steroids and chemo :/
I asked my Oncologist what his true thoughts were on my prognosis now, given that the tumours are back. His words to me were...."well with any luck, hopefully we can keep these at bay for 6 months to a year. I obviously will take this information with a grain of salt. I beat the odds last time, and it is my intention to do it again. My biggest fear is that I am now fighting 2 tumours as opposed to 1 like last time.
I will fight the fight as I did before....but with even more determination in memory of the close friends I have lost to the cancer battle over the past couple of years.
PS: CANCER SUX!
Ed
Angela Apr. 8/2011 Day 51
Well some good news with Angela. She must have passed her "swallow test" today. Karen called me from the hospital and told me she was actually feeding Angela some soft foods and Popsicles etc. Yeah, WOW is the word. :) Let the progress continue!!!!! :)
Wednesday, April 6, 2011
Angela April 6/2011 Day 49
Hard to beleive that Angela will have been in the ICU for 50 days tomorrow!! UGH
Myself, Mom and Shirley went to visit her earlier this evening and she seemed in better spirits. We rubbed her feet and back and almost put her to sleep. lol They inserted the tube today, directly into her stomach and bowels for the nutrition bag. She still has one tube in her nose but does not seem as bothered by it now.
On Friday, they are going to try a swallow test, where they will introduce a soft food and see if she is able to swallow it and monitor her throat etc during the test. If all goes well, hopefully she may be able to have some REAL food next week (or even Friday if the testing goes well) I think things are slowly coming together for Angela now. Lets hope and pray the progress continues!
Myself, Mom and Shirley went to visit her earlier this evening and she seemed in better spirits. We rubbed her feet and back and almost put her to sleep. lol They inserted the tube today, directly into her stomach and bowels for the nutrition bag. She still has one tube in her nose but does not seem as bothered by it now.
On Friday, they are going to try a swallow test, where they will introduce a soft food and see if she is able to swallow it and monitor her throat etc during the test. If all goes well, hopefully she may be able to have some REAL food next week (or even Friday if the testing goes well) I think things are slowly coming together for Angela now. Lets hope and pray the progress continues!
Tuesday, April 5, 2011
Angela Apr. 5/11 Day 48
Not much change in Angela since my last post. She has been pulling the feed and waste tubes out of her nostrils quite a bit lately (mostly on purpose according to the nurses) so tomorrow they are running direct lines into her stomach area for both tubes. It is too dangerous for the tubes to be continually pulled out as well as a lengthy x-ray procedure to re-insert them.
Angela has shown some confusion in some areas as well over the past few days. She thinks she has five children (only has 3) as well as a couple of other things. This could be the ICU psychosis I talked of earlier or perhaps something else.
Ang has not been very talkative lately during visits either. :(
Angela has shown some confusion in some areas as well over the past few days. She thinks she has five children (only has 3) as well as a couple of other things. This could be the ICU psychosis I talked of earlier or perhaps something else.
Ang has not been very talkative lately during visits either. :(
Friday, April 1, 2011
Angela Apr. 1/11 9pm Day 44
Shirley and I visited Angela earlier this evening and she has shown a fair bit of improvement since yesterday. I would say she is about 90% aware of her surroundings again and was able to mouth some words. I think Angela also realizes how much of a step back she had taken as she was quite emotional. Such a heart-wrenching sight to see. They have moved her from one on one care to the extended ICU again so that in itself is positive news :)
Again, she still has a very long road to recovery ahead of her and we still do not know what her capabilities will be. Hoping for some more progress over the weekend and with any luck, she will be back on track to where she was before the latest setback.
Again, she still has a very long road to recovery ahead of her and we still do not know what her capabilities will be. Hoping for some more progress over the weekend and with any luck, she will be back on track to where she was before the latest setback.
Thursday, March 31, 2011
Angela Mar 31/11 1045pm Day 43
Well I was pretty disappointed with the Doctors Meeting today. We didn't really learn much except that neurologically, they do not think there was any more damaged caused by the seizures. Root cause of the seizures appears to be her sodium levels being out. The ICU doctors were not present at the meeting.
They did an upper G.I. scope on Angela today but we did not hear any results from it as of yet. There is a high probability of internal bleeding caused by some bleeding ulcers.
When we visited Angela today, she seemed to be semi-coherent. She was not talking but was able to follow verbal commands for brief periods before she would slip out of it again. This feels like we are starting the healing process all over again. Its Day 43 and I can tell this is taking its toll on Angela as well as the rest of the family. We can only hope and pray that she is going to continue to progress forward and hopefully with no more setbacks. This has certainly been such an emotional roller-coaster for all friends and family. Thank you to everyone for your kind gestures, thoughts and prayers during this trying time for our family.
They did an upper G.I. scope on Angela today but we did not hear any results from it as of yet. There is a high probability of internal bleeding caused by some bleeding ulcers.
When we visited Angela today, she seemed to be semi-coherent. She was not talking but was able to follow verbal commands for brief periods before she would slip out of it again. This feels like we are starting the healing process all over again. Its Day 43 and I can tell this is taking its toll on Angela as well as the rest of the family. We can only hope and pray that she is going to continue to progress forward and hopefully with no more setbacks. This has certainly been such an emotional roller-coaster for all friends and family. Thank you to everyone for your kind gestures, thoughts and prayers during this trying time for our family.
Wednesday, March 30, 2011
Angela Mar 30/11 Day 42
Angela's condition remains about the same unfortunately. She had to have more blood transfusions today and there is a possibility that she may have some internal bleeding. Mom said that she did feel Angela squeeze her hand for a brief second as well as what appeared to be some tears shed. Hard to say if these are voluntary or involuntary actions at this point. Mom also said that there seemed to be a "coffee ground-like" substance coming out her her stomach via the tube. They are going to perform a scope of her stomach tomorrow at 9am
Family meeting still planned for 4pm tomorrow at the hospital.
Family meeting still planned for 4pm tomorrow at the hospital.
Tuesday, March 29, 2011
Angela Mar 29/11 9:45pm
Visited with Ang this afternoon. For the most part her condition is unchanged. This evening they had to give her a blood transfusion due to her hemoglobin counts being too low from what I have heard. They are also doing a lot of suctioning right now. Apparantly Angela's sodium and potassium levels were quite abnormal around the time of the seizures. Not sure if this has any bearing on the outcome or not though. Family Meeting planned for Thursday at 4pm to meet with the Doctors for a more formal update of Angela's condition.
Angela Mar 29/11 9am Day 41
Unfortunately, no change overnight with Angela. Still unresponsive and has an E.E.G. planned for today. Continues to be on a modified dialysis. I am going to the hospital today and will update later after my visit.
Monday, March 28, 2011
Angela Mar 28/11 Pt 2
Unfortunately, Angela has remained unresponsive since her seizure episodes this morning. She is not responding to any stimuli whatsoever. The brain scan came back with nothing really to report...which is not a good sign. I was hoping that it was just due to brain swelling but that is not the case. She will undergo a different type of dialysis over the next few days. I guess it is a special set-up for patients who are in Angela's condition right now (unresponsive)
Just when we seen that glimmer of hope....poof, it has been taken away. I will continue to update as news comes in.
Just when we seen that glimmer of hope....poof, it has been taken away. I will continue to update as news comes in.
Angela Mar 28/11 Day 40
Not a very good morning for Angela today. Received a call from the nurse telling me that she had some seizure activity during the past couple of hours. They have it controlled for now and are sending her for another brain scan to check for any abnormalities that may be happening. From personal experience, I do know that swelling around the brain can cause seizure activity but I am sure there are other issues that could have caused it too. After her scan, Angela will undergo dialysis again today.
The family, as well as myself, did notice Angela seemed to be having a lot of tremors since Friday. Not sure if this was related to the seizures that took place today or not. I will update as more information becomes available.
Thanks,
Ed
The family, as well as myself, did notice Angela seemed to be having a lot of tremors since Friday. Not sure if this was related to the seizures that took place today or not. I will update as more information becomes available.
Thanks,
Ed
Thursday, March 24, 2011
Angela Mar. 24/11 Day 36
Went up with Mom to see Angela today. I think her spirits are down somewhat lately. I am sure this is due to the length of time that she has been hospitalized. There is a loose medical term called ICU Psychosis that is used to describe some of the abnormal psychological activity that goes on in a person's mind during a lengthy stay in an ICU unit. Some patients have hallucinations, some feel as if they are a caged animal locked in solitary confinement. I get the feeling that Angela is going through some of these symptoms. It must be difficult to be disassociated with the outside world for such a period of time. It makes me think of how all the elderly and invalid must feel on a daily basis. Try to remember that the next time when one of these folks try to bend your ear for a few minutes. Those precious 5 or 10 minutes of your 1440 minute day you are able to give them will probably mean more to them than you will ever realize. You'll spend more time picking out a movie to take home to enjoy with your family.......just food for thought.
Angela's health is still up and down each day. She is still unable to breathe on her own although she is now able to spend a few hours each day off the respirator with the assistance of some oxygen close to her mouth either via nasal tubes or a vent mask.
She was able to walk approx 50 metres with the assistance of a mechanical walker and an O/T aide on either side of her. Small steps, but forward steps nonetheless. She was still running a bit of a fever today as well as not being able to take much the the nutrition without encountering problems. Because of the food issue, as well as just being inactive for over a month, Angela has lost quite a bit of overall body mass and is looking quite frail. According to Angela, her biggest discomforts are in her stomach as well as headaches.
I do still sense a fair amount of confusion when asked certain questions, but hopefully this will improve with time and is only a result of experiencing such a traumatic event.
Ed
Angela's health is still up and down each day. She is still unable to breathe on her own although she is now able to spend a few hours each day off the respirator with the assistance of some oxygen close to her mouth either via nasal tubes or a vent mask.
She was able to walk approx 50 metres with the assistance of a mechanical walker and an O/T aide on either side of her. Small steps, but forward steps nonetheless. She was still running a bit of a fever today as well as not being able to take much the the nutrition without encountering problems. Because of the food issue, as well as just being inactive for over a month, Angela has lost quite a bit of overall body mass and is looking quite frail. According to Angela, her biggest discomforts are in her stomach as well as headaches.
I do still sense a fair amount of confusion when asked certain questions, but hopefully this will improve with time and is only a result of experiencing such a traumatic event.
Ed
Monday, March 21, 2011
Angela Mar 21/11 9am Day 33
Good morning:
Its been a few days since my last post but it seems that Angela is still slowly improving. She has been able to walk short distance but is still having a difficult time with breathing. She has been able to be off respiration at intervals of about an hour twice yesterday. They have done another chest x-ray to determine if she still has a lot of fluid build-up in her lungs.
Angela has also developed a high fever overnight so they are doing culture testing on that. She remains on dialysis at this point also. I think the biggest fear now is physical impairment. Her organs have taken a beating and only time will tell if recovery is possible for them.
Its been a few days since my last post but it seems that Angela is still slowly improving. She has been able to walk short distance but is still having a difficult time with breathing. She has been able to be off respiration at intervals of about an hour twice yesterday. They have done another chest x-ray to determine if she still has a lot of fluid build-up in her lungs.
Angela has also developed a high fever overnight so they are doing culture testing on that. She remains on dialysis at this point also. I think the biggest fear now is physical impairment. Her organs have taken a beating and only time will tell if recovery is possible for them.
Wednesday, March 16, 2011
Angela Mar 16/11 10pm Day 28
Had our Family Meeting with the Head Doctor of ICU today (Neurology was not available). Angela's ability to breathe on her own and her lack of kidney function are the two primary focus right now. According to the Doc, it is still too early to determine whether her kidneys will regain function just yet. She told us that if no improvement is seen within a two month window, then the chances get slimmer and slimmer of her regaining that function.
As far as breathing is concerned, Angela seems to be able to be off the vent for a period of time following dialysis. Reason being is that they believe a fair amount of fluid is still being taken off the lungs by dialysis and allowing her to breathe without assistance (although there is still an oxygen mask placed close to her mouth while the trach is capped off.
As for any brain impairment, it is still too early to tell, but at least she is able to recall basic events right now. as the repeated words go......its all going to take "time" to see what improvements surface.
I was appointed Trustee over Angela's day to day affairs regarding finances etc today. Along with that, I will keep her son Brandon under my wing for now.
As far as breathing is concerned, Angela seems to be able to be off the vent for a period of time following dialysis. Reason being is that they believe a fair amount of fluid is still being taken off the lungs by dialysis and allowing her to breathe without assistance (although there is still an oxygen mask placed close to her mouth while the trach is capped off.
As for any brain impairment, it is still too early to tell, but at least she is able to recall basic events right now. as the repeated words go......its all going to take "time" to see what improvements surface.
I was appointed Trustee over Angela's day to day affairs regarding finances etc today. Along with that, I will keep her son Brandon under my wing for now.
Tuesday, March 15, 2011
Angela Mar 15/11 1015am Day 27
Angela underwent more dialysis last night and they apparently pulled a lot of fluid off her lungs. She was quite exhausted after that and had to be put on full ventilation for the remainder of the night. As of this morning, she is back on pressure-assisted breathing only (same as prior to dialysis)
The Skin Care team has still not arrived to look at the wound on Angela. The hope is that they will be able to fit her in today. Occ. Therapy is also scheduled for a visit today to review the drop foot issues with her foot/feet.
We have scheduled a Family Meeting with the Doctor tomorrow at 1pm for a formal update on Angela's progress and future prognosis.
The Skin Care team has still not arrived to look at the wound on Angela. The hope is that they will be able to fit her in today. Occ. Therapy is also scheduled for a visit today to review the drop foot issues with her foot/feet.
We have scheduled a Family Meeting with the Doctor tomorrow at 1pm for a formal update on Angela's progress and future prognosis.
Monday, March 14, 2011
Angela Mar 14/11 10am Day 26
Over the past couple of days, Angela hasen't responded too well to any attempts of closing off the trach and allowing her to try to breathe on her own. This morning, they are going to do another chest x-ray to look at the condition of her lungs again and check for any fluid build up. Today, a skin specialist will see her and assess the condition and treatment of the wound on her backside.
Angela will undergo dialysis again today around 3pm for approx. 3-4 hours. Depending on how tired she is from that, they may attempt to plug the trach again and see if she can take any breaths on her own. The nurse also said they will try to get her into the chair again at some point through the day. I will be visiting Angela today and will post more if there is anything worthy.
Ed
Angela will undergo dialysis again today around 3pm for approx. 3-4 hours. Depending on how tired she is from that, they may attempt to plug the trach again and see if she can take any breaths on her own. The nurse also said they will try to get her into the chair again at some point through the day. I will be visiting Angela today and will post more if there is anything worthy.
Ed
Sunday, March 13, 2011
Angela Mar 13/11 9:30am
The past few days have been fairly stable for Angela although she is experiencing a lot of discomfort in various areas. Yesterday they attempted to remove the ventilator but were not too successful. Angela seemed to go into panic mode and had a hard time breathing. They will try this again today in hopes of weaning her off the breathing device eventually.
They have put a consultation request in for a Skin Specialist to review a large wound on her backside, which they likened to a chemical burn. This is the result of bodily waste laying against the skin.
Day by day, things seem to be improving. Hopefully with the start of a new week, we will see some more progress and get some more answers as to her revised condition.
Again, the family thanks each and every one of you for the tremendous support during this trying time.
They have put a consultation request in for a Skin Specialist to review a large wound on her backside, which they likened to a chemical burn. This is the result of bodily waste laying against the skin.
Day by day, things seem to be improving. Hopefully with the start of a new week, we will see some more progress and get some more answers as to her revised condition.
Again, the family thanks each and every one of you for the tremendous support during this trying time.
Friday, March 11, 2011
Angela Mar11/11 10am Day 23
Angela had a fairly stable night last night. Still able to respond to commands etc this morning. They are going to attempt to crane her into a chair again at some point today. She will also undergo dialysis again. Now that she is conscious and aware of her surroundings, she is also aware of pain unfortunately. Hopefully this will subside as her body mends. Yesterday, she pulled both tubes out of her nostrils so they had to restrain her and they have been unsuccessful thus far at getting the one back into the lower region of her stomach to excrete fluid/waste.
Physical as well as mental capabilities are obviously still a concern at this point. As with the whole situation, I guess time will determine the extent of both of those. Angela still remains in ICU so she is still requiring 24/7 care.
Physical as well as mental capabilities are obviously still a concern at this point. As with the whole situation, I guess time will determine the extent of both of those. Angela still remains in ICU so she is still requiring 24/7 care.
Thursday, March 10, 2011
Angela Mar 10/11 10pm
Wow...what a day. Went in to visit Angela today and although grimacing from a lot of pain, she was actually sitting in a chair and was able to talk!! I swear my jaw bounced off the floor. What a turnaround!! I think all of the hospital staff is shaking their heads in amazement. I am astounded by the human body anymore. I am still in shock of what a turn of events have taken place over the past couple of days. Angela's progress is almost beyond belief. Crazy!!!!
Tonight when mom and Shirley went up, she was a little more subdued than today and was back on the vent. I'm sure today took a lot out of her.
The Big Guy upstairs has certainly been blasted with many prayers lately and thanks to you all, it has paid huge dividends. Thank you....thank you....thank you!!!
I am still trying to wrap my head around her remarkable progress, so before I begin to stammer on endlessly about how amazing this is....I will just shut up and go to bed.
Again,all of your well-wishes and prayers have done the job.......we, as a family, thank you so much. :)
Tonight when mom and Shirley went up, she was a little more subdued than today and was back on the vent. I'm sure today took a lot out of her.
The Big Guy upstairs has certainly been blasted with many prayers lately and thanks to you all, it has paid huge dividends. Thank you....thank you....thank you!!!
I am still trying to wrap my head around her remarkable progress, so before I begin to stammer on endlessly about how amazing this is....I will just shut up and go to bed.
Again,all of your well-wishes and prayers have done the job.......we, as a family, thank you so much. :)
Wednesday, March 9, 2011
Angela Mar 9/11 9am
Day 21.....Well from the news I have received, Angela is making pretty remarkable progress over the past few days. She is able to mouth words now and is able to recognize who different people are. I swear that girl is like a cat that you toss 200 feet into the air....when she lands, it always seems be be on all fours!
Angela is by no means out of the woods though. She is still fighting off a few different infections and has not been able to keep the nutrient bag contents in her without vomiting. Today, they are going to try the nutrients again at a half dosage and see how she reacts to it. There is discussion of another Catscan today for her chest as well as she will be on dialysis again this morning.
The "Pain" Doctor is also going to assess her condition today to determine her actual level of pain/discomfort and prescribe or adjust medication as necessary.
So in the big picture, there has been vast improvement in the past while. Lets hope that it continues in the forward direction so she can get out of ICU. This is Day 21 in ICU.
Angela is by no means out of the woods though. She is still fighting off a few different infections and has not been able to keep the nutrient bag contents in her without vomiting. Today, they are going to try the nutrients again at a half dosage and see how she reacts to it. There is discussion of another Catscan today for her chest as well as she will be on dialysis again this morning.
The "Pain" Doctor is also going to assess her condition today to determine her actual level of pain/discomfort and prescribe or adjust medication as necessary.
So in the big picture, there has been vast improvement in the past while. Lets hope that it continues in the forward direction so she can get out of ICU. This is Day 21 in ICU.
Monday, March 7, 2011
Angela Mar 7/11 9am Day 19
Good morning:
Well it is day 19 now for Angela in ICU. Still on life-support with no indication right now if/when that will change. As the days turn to weeks, the frustration and feelings of helplessness continue to escalate. Its hard to just sit back and let the professionals do their thing. I'm hoping though, that as family and friends read this, we all accept the fact that we ARE unfortunately helpless in a situation like this. All we can do is remain positive and vigilant with our visits and hope that somewhere inside of Angela, she realizes that we are all pulling for her with every minute that passes by.
As of this morning, Angela still is able to follow commands but at a weakened level. They may try to wean her from her blood pressure medication today and monitor how she reacts to it. She will receive dialysis again this afternoon and is still fighting a couple of different infections (lungs and urinary tract). The nurse informed me that they are removing her Foley catheter since she is not able to rid herself of much urine right now. Secondly, it is possible that the catheter has caused a urinary tract infection now. (the infection is for sure although its just an educated guess as to the cause)
Ang is still fighting influenza so all visitors must be fully gowned, masked and gloved prior to entry.
We need to remind ourselves that this could go on for months and that we will be of little or no support to her if we let our own physical condition deteriorate. So yes....I'm telling the family to look after yourselves!!!!!!!
Ed
Well it is day 19 now for Angela in ICU. Still on life-support with no indication right now if/when that will change. As the days turn to weeks, the frustration and feelings of helplessness continue to escalate. Its hard to just sit back and let the professionals do their thing. I'm hoping though, that as family and friends read this, we all accept the fact that we ARE unfortunately helpless in a situation like this. All we can do is remain positive and vigilant with our visits and hope that somewhere inside of Angela, she realizes that we are all pulling for her with every minute that passes by.
As of this morning, Angela still is able to follow commands but at a weakened level. They may try to wean her from her blood pressure medication today and monitor how she reacts to it. She will receive dialysis again this afternoon and is still fighting a couple of different infections (lungs and urinary tract). The nurse informed me that they are removing her Foley catheter since she is not able to rid herself of much urine right now. Secondly, it is possible that the catheter has caused a urinary tract infection now. (the infection is for sure although its just an educated guess as to the cause)
Ang is still fighting influenza so all visitors must be fully gowned, masked and gloved prior to entry.
We need to remind ourselves that this could go on for months and that we will be of little or no support to her if we let our own physical condition deteriorate. So yes....I'm telling the family to look after yourselves!!!!!!!
Ed
Sunday, March 6, 2011
Angela Mar 6/11 9:55am
It is now Day 18 for Angela in ICU. Not a lot new to report other than she is still fighting an infection of some sort so any visitors must wear gloves, mask and gown prior to entering. She is still somewhat responsive to pain stimuli as well as some commands. The longer she remains in ICU on life-support, the more chances of her contracting more infection, viruses etc. That is just the nature of the ICU unfortunately.
Saturday, March 5, 2011
Angela Mar 5/11 9:30am (for Les)
Just off the phone with Angela's nurse and she said that Ang was a bit "brighter" today. She was able to respond to commands with her extremities as well as nod her head when asked if she knew she was in a London hospital.
Angela had an episode of vomiting last night so they removed the nutrition bag for now and may re-introduce it today. Blood tests did show that she has some infection in her so they are monitoring that as well as administering antibiotics. All else remains the same.
This will be day 17 in the ICU.
As an FYI, Angela's condition has been pin-pointed as "P.R.E.S. Syndrome" ~Google it~
Angela had an episode of vomiting last night so they removed the nutrition bag for now and may re-introduce it today. Blood tests did show that she has some infection in her so they are monitoring that as well as administering antibiotics. All else remains the same.
This will be day 17 in the ICU.
As an FYI, Angela's condition has been pin-pointed as "P.R.E.S. Syndrome" ~Google it~
Friday, March 4, 2011
Angela Mar 4/11 1400 hrs
Not much info came out of the meeting really. There has not been any worsening of the brain matter from the MRI results so hopefully that is a sign that it is somewhat reversible. As for Angela's kidneys, it is still too early to determine whether they will function or not. The Doc said it is usually 4-6 weeks before a determination can be made. Today they also said that it could be 6 months to a year before a it can be determined what her abilities will be. This is going to be a long road!
After visiting with Angela this morning, she was still not very responsive to any commands. Her legs were moving a bit but not much else. At the time of the visit, she was undergoing dialysis again.
The longer she remains in ICU on life support, the more chance of things worsening due to infections etc. Hopefully she will be able to breathe on her own soon and be able to be moved out of there.
After visiting with Angela this morning, she was still not very responsive to any commands. Her legs were moving a bit but not much else. At the time of the visit, she was undergoing dialysis again.
The longer she remains in ICU on life support, the more chance of things worsening due to infections etc. Hopefully she will be able to breathe on her own soon and be able to be moved out of there.
Angela Mar 4/11 0900hrs
Just a short update for now....Angela's vitals seemed to have stabilized over night and she is scheduled for dialysis again today. They may also try to have her breathe using an oxygen mask today and see if she can tolerate it or not.
Thursday, March 3, 2011
Angela Mar 3/11 @ 2130 hrs
Wasn't a very good day and night for Angela. She was barely responsive this afternoon when we visited her and from what mom told me, even less responsive tonight. Hopefully that is just a sign of her body gathering strength.
There is another Family Meeting tomorrow at noon with the Neuro Team to review the past couple of days tests. Honestly, I don't expect to hear much new information but we shall see. I will post the again after the meeting unless something significant happens prior to that.
Thanks
There is another Family Meeting tomorrow at noon with the Neuro Team to review the past couple of days tests. Honestly, I don't expect to hear much new information but we shall see. I will post the again after the meeting unless something significant happens prior to that.
Thanks
Angela Mar 3/11 @ 0915hrs
Sorry for no update yesterday but Angela had a very busy day with tests and procedures etc.
While doing the dialysis yesterday, they encountered a blood clot near the end of the cycle so Ang may have to have it repeated again today. Normally they would only do it every other day. She has a trach tube in her throat now so the mouth breathing tube is now gone. They also inserted a central pic line as well as performed an MRI yesterday.
Angela now has, at time of writing, a high fever,influenza and elevated blood pressure so any family member or other persons who are on her "allowed visitor" list will have to mask before they go in to see her. If you are not on the allowed visitor list, please just read here for any updates and/or call one of the family members. We appreciate the thought of people wanting to visit her but her condition is still much too fragile to invite any outside sicknesses in to the room.
The MRI must have shown minimal brain swelling now because they felt comfortable enough to remove her drain tube from her head. After all of yesterday's procedures, Angela has seemed to slip back into an unresponsive state although the nurse did say that she was responding a bit this morning to external stimuli.
Thanks for your understanding and patience during this time.
While doing the dialysis yesterday, they encountered a blood clot near the end of the cycle so Ang may have to have it repeated again today. Normally they would only do it every other day. She has a trach tube in her throat now so the mouth breathing tube is now gone. They also inserted a central pic line as well as performed an MRI yesterday.
Angela now has, at time of writing, a high fever,influenza and elevated blood pressure so any family member or other persons who are on her "allowed visitor" list will have to mask before they go in to see her. If you are not on the allowed visitor list, please just read here for any updates and/or call one of the family members. We appreciate the thought of people wanting to visit her but her condition is still much too fragile to invite any outside sicknesses in to the room.
The MRI must have shown minimal brain swelling now because they felt comfortable enough to remove her drain tube from her head. After all of yesterday's procedures, Angela has seemed to slip back into an unresponsive state although the nurse did say that she was responding a bit this morning to external stimuli.
Thanks for your understanding and patience during this time.
Tuesday, March 1, 2011
Angela Mar 1/11 @ 2100 hrs
Took Angela's son Brandon up to see her this afternoon. Ang has made more progress today. She is able to track with her eyes almost 100% and can follow commands for a brief period of time. Small but positive steps for sure!
Catscan was done today but no results as of yet. The pic line didn't get done either due to a backlog in the department I guess. Angela will have a busy day tomorrow with removal of her breathing tube in the mouth and having a tracheactomy performed. So unfortunately she can still not breathe properly on her own yet. She will ungergo dialysis again tomorrow since her kidneys are still not functioning.
So its "hurry up and wait". Hopefully tomorrow brings some more positive news.
Ed
Catscan was done today but no results as of yet. The pic line didn't get done either due to a backlog in the department I guess. Angela will have a busy day tomorrow with removal of her breathing tube in the mouth and having a tracheactomy performed. So unfortunately she can still not breathe properly on her own yet. She will ungergo dialysis again tomorrow since her kidneys are still not functioning.
So its "hurry up and wait". Hopefully tomorrow brings some more positive news.
Ed
Angela Mar. 1/11 @ 0915 hrs
Well here we are on Day 13 of Angela's journey. Slowly but surely we are seeing SOME signs of recognition and response to stimuli. She seems to slip in and out of different states of awareness though.
The nurse's update this morning told me that her Catscan has already been completed today, and the results sent to the Neuro Team to review. They will attempt to remove the line in her groin today and insert another central pic line in a less susceptible location. After that has been completed, they will adjust her bed so that she is in more of an upright position. Hopefully that will be more comfortable for her and allow her to see more of her surroundings when she is able to.
All else still remains the same....still on life support.
The nurse's update this morning told me that her Catscan has already been completed today, and the results sent to the Neuro Team to review. They will attempt to remove the line in her groin today and insert another central pic line in a less susceptible location. After that has been completed, they will adjust her bed so that she is in more of an upright position. Hopefully that will be more comfortable for her and allow her to see more of her surroundings when she is able to.
All else still remains the same....still on life support.
Monday, February 28, 2011
Angela Feb 28/11 @ 1630 hrs
Visited Angela this afternoon. To me, she seems about the same as yesterday. She "seemed" to be able to track me with her eyes briefly as well as was able to stick her tongue out a couple of times on command. Seems to drift in and out of different states of alertness.
Medically, they ran her through dialysis again today, with plans of doing it every other day for 4 hours at a time. They were performing another EEG later today to look for brain activity.Later this evening, they are going to clamp off the drainage tube coming out of her brain and give her a Catscan tomorrow to see if there is still fluid build up or not. If it seems ok, they will remove the tube tomorrow. Ang is still scheduled for an MRI on Wednesday, at which time we will hopefully get some more insight as to what is or is not going on in her brain.
Thanks,
Ed
Medically, they ran her through dialysis again today, with plans of doing it every other day for 4 hours at a time. They were performing another EEG later today to look for brain activity.Later this evening, they are going to clamp off the drainage tube coming out of her brain and give her a Catscan tomorrow to see if there is still fluid build up or not. If it seems ok, they will remove the tube tomorrow. Ang is still scheduled for an MRI on Wednesday, at which time we will hopefully get some more insight as to what is or is not going on in her brain.
Thanks,
Ed
Angela Feb 28/11 @0700hrs
Unfortunately, it sounds as if there may have been some regression in Ang's condition overnight. She has slipped back in to being unresponsive again. They are hooking up the E.E.G. again today to monitor brain activity and as far as I know, she is now scheduled for another MRI on Wednesday.
I will be going up there around lunch time and hopefully can kick her butt back to the responsive state she was in yesterday. I kinda thought that we may go through this though....one step forward, 2 steps back for a while. Just have to remain positive and take it one day at a time.
I will update later this afternoon when I return from the hospital. As a family, we again, cannot thank everyone enough for all your positive thoughts and prayers during this time. We love you all and appreciate you more than words can say. :)
Ed
I will be going up there around lunch time and hopefully can kick her butt back to the responsive state she was in yesterday. I kinda thought that we may go through this though....one step forward, 2 steps back for a while. Just have to remain positive and take it one day at a time.
I will update later this afternoon when I return from the hospital. As a family, we again, cannot thank everyone enough for all your positive thoughts and prayers during this time. We love you all and appreciate you more than words can say. :)
Ed
Sunday, February 27, 2011
A glimmer of hope Angela Feb 27/11
Well I certainly got a little surprise today when Brandon and I arrived at the hospital. The nurse said she thought Angela was tracking her with her eyes earlier when she was bathing her. So I stuck my tongue out at her and low and behold, she did the same back to me!! Not wanting to jump to any conclusions, I repeated the same thing a few more times and left a span of about 5 minutes in between just to ensure it wasn't just a reflex or involuntary movement.Sure enough, she was able to do it on command a few times. Angela was also able to move her legs a small amount but very little, if any, movement in her arms.
Not sure if it was voice command or sight that made her stick out the tongue. I felt it was visual thing but when other family members arrived, they thought perhaps voice command. Either way, its a small step in the right direction. The nurse said she was also responding to lower leg pain stimulus testing. (i.e. scraping/pinching her foot). She seemed to slip in and out of whatever level of conscienceness she had been able to muster so we didn't push her too far today.
I swear this kid has nine lives!!! I will be visiting tomorrow after my own MRI results meeting at LRCC and with any luck, will see some more improvement.
Angela is by far out of the woods yet (today's nurse said it could be up to 6 months before the extent of damage is known) but at this point, any small glimmer of hope is a good thing. We remain with guarded optimism and can only hope and pray that time shows more good things.
Not sure if it was voice command or sight that made her stick out the tongue. I felt it was visual thing but when other family members arrived, they thought perhaps voice command. Either way, its a small step in the right direction. The nurse said she was also responding to lower leg pain stimulus testing. (i.e. scraping/pinching her foot). She seemed to slip in and out of whatever level of conscienceness she had been able to muster so we didn't push her too far today.
I swear this kid has nine lives!!! I will be visiting tomorrow after my own MRI results meeting at LRCC and with any luck, will see some more improvement.
Angela is by far out of the woods yet (today's nurse said it could be up to 6 months before the extent of damage is known) but at this point, any small glimmer of hope is a good thing. We remain with guarded optimism and can only hope and pray that time shows more good things.
Angela Feb 27/11 @ 0900hrs
Well, here we are at Day 10 now. It feels like day 100 some days, and at other times it feels like only yesterday.
I have got the morning update from the hospital and there has been no change neurologically with Angela. She was up to 80% oxygen requirements (from the equipment) yesterday but has settled down to 50% as of now. The anti-seizure meds are working now...there has been no seizure activity recently. Will receive dialysis either today or tomorrow.
Ang remains in a comatose state without sedation and only the occasional pain med when she becomes agitated. Unfortunately, that is all the news we have right now. Hoping that the coming week will bring some news. The Neuro doc said that if/when she responds to anything/anyone, its likely to be a family member first so we will continue the daily trips to the hospital to bug her ;)
I have got the morning update from the hospital and there has been no change neurologically with Angela. She was up to 80% oxygen requirements (from the equipment) yesterday but has settled down to 50% as of now. The anti-seizure meds are working now...there has been no seizure activity recently. Will receive dialysis either today or tomorrow.
Ang remains in a comatose state without sedation and only the occasional pain med when she becomes agitated. Unfortunately, that is all the news we have right now. Hoping that the coming week will bring some news. The Neuro doc said that if/when she responds to anything/anyone, its likely to be a family member first so we will continue the daily trips to the hospital to bug her ;)
Friday, February 25, 2011
Angela Feb 25/11 @ 2000 hrs
Well we had another Family meeting with the Head of Neuro and unfortunately, not much "new" news. On the neurological side of things, they are still hoping that the white matter damage seen on the MRI is reversible but only time will tell. Ang had dialysis this afternoon and they drained some fluid off her lungs. Her blood pressure is still up and down and still unresponsive.
The Neuro Doctor said that if we are to see any improvement, it should come within the next 7 days.
The Neuro Doctor said that if we are to see any improvement, it should come within the next 7 days.
Angela Feb 25/11 @ 0845hrs
Just off the phone for the morning update.....The blood problem in the bowel seems to be better at this time. Angela will undergo more dialysis today and also an ultrasound to check for blood clots in her legs. Neurologically, there has been no change. Yesterday they had to add an additional tube to go into her lungs.The poor thing has a million tubes going into her :(
Family meeting time to be confirmed later today.
Again, we all truly are grateful for everyone's thoughts and prayers. Your support is amazing.
Family meeting time to be confirmed later today.
Again, we all truly are grateful for everyone's thoughts and prayers. Your support is amazing.
Angela Feb 25/11 @ 0730hrs
I will update more this morning after the nurses complete their shift change but last night, Ang was unfortunately losing blood through her bowels so they had to give her a blood transfusion. They have also asked that we try not to talk to her too much at this time because her blood pressure is continuing to be unstable. We have another family meeting with thte Neuro Team later today.
Wednesday, February 23, 2011
Feb 23/11 @ 2110hrs
Well the myriad of emotions continues. Yesterday we were told that If Angela survives this, she would require 24/7 care and it is unknown what level of awareness she will have ......today they have flip-flopped to well "we really don't know the extent of damage yet". Unreal!!!!!!!!!!
I know the Doctors are only human and can only go by past historical events when dealing with this kind of thing but it is like tossing a dog a bone, then taking it away from him, and then giving it back again. My frustration level continues to increase daily but I try to just keep telling myself that we all have to be patient and let the Medical staff and her body do their thing and just remain hopeful.
Ok, I have vented....on to the latest info.
Angela had her MRI this morning and and there was a slight improvement in the brain swelling. She had been given a megadose of steroids to combat the swelling so it must be working somewhat. MRI also did show various spots of white matter changes as well as some abnormal signals. She will resume dialysis tomorrow and the plan is to try take her off of that to see if her kidneys can function without mechanical aid in the next few days. There is still an amount of seizing happening in the right frontal lobe so she has been given anti-seizure meds as well.
On a positive note, some of the family thought she looked a bit better today and she would occasionally (what appeared to be) chew on her feeding tube. There was also some side to side head movement which was observed. Angela is still in a coma and for the most part, unresponsive.
So we wait some more.....another Family meeting scheduled with the Neuro Team this Friday afternoon.It could be another week before we learn any REAL news. I will continue to update as any pertinent status reports become available.
Thanx
I know the Doctors are only human and can only go by past historical events when dealing with this kind of thing but it is like tossing a dog a bone, then taking it away from him, and then giving it back again. My frustration level continues to increase daily but I try to just keep telling myself that we all have to be patient and let the Medical staff and her body do their thing and just remain hopeful.
Ok, I have vented....on to the latest info.
Angela had her MRI this morning and and there was a slight improvement in the brain swelling. She had been given a megadose of steroids to combat the swelling so it must be working somewhat. MRI also did show various spots of white matter changes as well as some abnormal signals. She will resume dialysis tomorrow and the plan is to try take her off of that to see if her kidneys can function without mechanical aid in the next few days. There is still an amount of seizing happening in the right frontal lobe so she has been given anti-seizure meds as well.
On a positive note, some of the family thought she looked a bit better today and she would occasionally (what appeared to be) chew on her feeding tube. There was also some side to side head movement which was observed. Angela is still in a coma and for the most part, unresponsive.
So we wait some more.....another Family meeting scheduled with the Neuro Team this Friday afternoon.It could be another week before we learn any REAL news. I will continue to update as any pertinent status reports become available.
Thanx
Tuesday, February 22, 2011
Feb 22 @ 11pm
Unfortunately, Angela's scheduled MRI has been postponed until tomorrow at 10am due to larger than normal number of Neuro patients currently in hospital. They did however do an SSEP test (Somatosensory Evoked Potential (SSEP) is a test showing the electrical signals of sensation going from the body to the brain. The signals show whether the nerves that connect to the spinal cord are able to send and receive sensory information like pain, temperature, and touch.) This test did show some activity in the brain so that was good news but we will take it with guarded optimism at this point.
As of this evening, Angela has also developed a fever so specimens of her cerebral-spinal fluid and urine have been sent out for testing to check for infection etc.
At the time of writing, we are supposed to meet with the Neuro Team tomorrow at approx 1800hrs. Obviously , this is all subject to change as the day progresses tomorrow.
Note: We have lost the use of the private Family Room so please do not call that number going forward. Any contact will have to be made directly to the Family's personal phones.
Myself and my entire family truly appreciate all the support that you have all extended during this difficult time
As of this evening, Angela has also developed a fever so specimens of her cerebral-spinal fluid and urine have been sent out for testing to check for infection etc.
At the time of writing, we are supposed to meet with the Neuro Team tomorrow at approx 1800hrs. Obviously , this is all subject to change as the day progresses tomorrow.
Note: We have lost the use of the private Family Room so please do not call that number going forward. Any contact will have to be made directly to the Family's personal phones.
Myself and my entire family truly appreciate all the support that you have all extended during this difficult time
Angela Feb 22/11 1030hrs
At the time of writing everything is pretty much the same. Angela remains in a coma and is currently on dialysis due to kidney failure. It was a quiet evening for her thankfully.
We are hoping for a lot of activity today with testing etc now that the long weekend is over. The hardest part for all of us I believe is the waiting and wondering, without any firm answers. Just need to stay strong for one another and hope for the best.
We are hoping for a lot of activity today with testing etc now that the long weekend is over. The hardest part for all of us I believe is the waiting and wondering, without any firm answers. Just need to stay strong for one another and hope for the best.
Monday, February 21, 2011
Angela
For friends of mine that want to know what happened to Angela....here is what we know.
I rec'd a call that Angela was on the floor in her house unresponsive a couple of days ago. Myself and my sister rushed over there to find her laying at the foot of her bed on the floor. She was unresponsive at that time and the bedroom and bathroom were covered with vomit and blood. (combined...no external injuries) I had my sister monitor her and try to get a response from her as her breathing was very irregular while I called 911.
Admitted to St.Thomas hospital until stable enough to be transferred to University hospital in London. At this point still unresponsive and sky-rocketing blood pressure. She had been seizuring at home as well as at the hospital.
Extensive tests done at U.H. and had to drill a hole in skull to relieve pressure build-up on the brain. E.E.G. done as well as a brain scan. It showed trauma throughout the brain as well as a shift in the brain itself.
Went in for surgery last night to remove some bone from her skull to allow more pressure relief from the brain. As the surgeon put it, " there is so much pressure on it that if I cut it open at the top of the skull, her brain would literally fly out of the opening."
All the while, Angela is in a coma....and this time it is not medically induced. Surgery was successful but the next couple of days will tell if the swelling will subside or not.
At the time of writing, Angela is still in a coma and is unresponsive to any testing done by the staff. The prognosis is not very promising. If in fact Angela comes out of this alive, it is more than likely she will have extensive brain damage and will never be the same again. At this point also, she is unable to support her own basic body functions and is still on life support.
I will attempt to update as any news becomes available. Please keep her and our family in your thoughts and prayers.
Note: The medical team is still unsure as of the root cause of all of this.
Feb 20/11 : As of last night, Angela is still in the same condition, the brain swelling is still an issue and it has been determined that she did have a couple of small hemmorages in the front left lobe of the brain. She is currently taking up to 10 breaths per minute on her own. The staff did some pain stimulus testing last night but said the only recieved a very small amount of response. The Neuro team will be doing thier rounds this morning and hopefully I can provide more details later today.
Feb 21/11 : Well unfortunately not too much positive to report. I just got home from the hospital (what a crappy drive) and things still seem to be status quo. With it being the weekend and today Family Day, there is not a lot of staff available for the extensive testing of the brain etc. Hopefully early in the week we can get back to business. Angela is still in a coma and unable to support her own body functions. My ealier comment about her being able to take up to 10 breaths per minute was incorrect. I guess I misinterpreted that one. She still requires the ventilator all the time. There are still a lot of unanswered questions regarding all this but them seem to be pointing the finger towards un-checked high blood pressure being the major contributor to her condition. More Cat Scans and MRIs will hopefully show the extent of the brain damage and we can go from there. As crazy as my family can be at times, I am happy to say that we are all 110% focused on Angela and have been very supportive of one another during this trying time. Thank you also to each and every one of you who has shown thier support during all of this.
Feb 21/11 1:15pm: Just got a call that Angela's kidneys are shutting down and they are beginning dialysis.. :(
I rec'd a call that Angela was on the floor in her house unresponsive a couple of days ago. Myself and my sister rushed over there to find her laying at the foot of her bed on the floor. She was unresponsive at that time and the bedroom and bathroom were covered with vomit and blood. (combined...no external injuries) I had my sister monitor her and try to get a response from her as her breathing was very irregular while I called 911.
Admitted to St.Thomas hospital until stable enough to be transferred to University hospital in London. At this point still unresponsive and sky-rocketing blood pressure. She had been seizuring at home as well as at the hospital.
Extensive tests done at U.H. and had to drill a hole in skull to relieve pressure build-up on the brain. E.E.G. done as well as a brain scan. It showed trauma throughout the brain as well as a shift in the brain itself.
Went in for surgery last night to remove some bone from her skull to allow more pressure relief from the brain. As the surgeon put it, " there is so much pressure on it that if I cut it open at the top of the skull, her brain would literally fly out of the opening."
All the while, Angela is in a coma....and this time it is not medically induced. Surgery was successful but the next couple of days will tell if the swelling will subside or not.
At the time of writing, Angela is still in a coma and is unresponsive to any testing done by the staff. The prognosis is not very promising. If in fact Angela comes out of this alive, it is more than likely she will have extensive brain damage and will never be the same again. At this point also, she is unable to support her own basic body functions and is still on life support.
I will attempt to update as any news becomes available. Please keep her and our family in your thoughts and prayers.
Note: The medical team is still unsure as of the root cause of all of this.
Feb 20/11 : As of last night, Angela is still in the same condition, the brain swelling is still an issue and it has been determined that she did have a couple of small hemmorages in the front left lobe of the brain. She is currently taking up to 10 breaths per minute on her own. The staff did some pain stimulus testing last night but said the only recieved a very small amount of response. The Neuro team will be doing thier rounds this morning and hopefully I can provide more details later today.
Feb 21/11 : Well unfortunately not too much positive to report. I just got home from the hospital (what a crappy drive) and things still seem to be status quo. With it being the weekend and today Family Day, there is not a lot of staff available for the extensive testing of the brain etc. Hopefully early in the week we can get back to business. Angela is still in a coma and unable to support her own body functions. My ealier comment about her being able to take up to 10 breaths per minute was incorrect. I guess I misinterpreted that one. She still requires the ventilator all the time. There are still a lot of unanswered questions regarding all this but them seem to be pointing the finger towards un-checked high blood pressure being the major contributor to her condition. More Cat Scans and MRIs will hopefully show the extent of the brain damage and we can go from there. As crazy as my family can be at times, I am happy to say that we are all 110% focused on Angela and have been very supportive of one another during this trying time. Thank you also to each and every one of you who has shown thier support during all of this.
Feb 21/11 1:15pm: Just got a call that Angela's kidneys are shutting down and they are beginning dialysis.. :(
Wednesday, January 12, 2011
Jan.12/11 CANCERVERSARY!!
Geez, where to begin with this post?? I guess first and foremost, thank you for all the birthday wishes that I've received so far. I am truly blessed to have all of you in my life.
Today, I turned 43 years old....more importantly, today marks the 3 year anniversary of my diagnosis with a stage 4 brain cancer. What a whirlwind experience this has been. I have been at the lowest of lows and the highest of highs during this time. There have been times where I was scared whether or not I would see tomorrow, to more recently, believing that I am still here for a reason. The primary reason is my daughter Faith...I guess we unknowingly named her that for a reason. That child is my shining light, my reason, my purpose. I believe that it is because of her, that I am still on this earth.
The past 6 months have been very trying with friends passing from cancer, to as recently as today, with the news of yet another friend who was diagnosed yesterday with a lung cancer. It is so sad that we are all directly or indirectly affected by this rotten disease. You can't seem to carry out a conversation without the "C word" being brought up anymore. My personal opinion, after researching quite extensively, is that we all have the cancer genes in us, and that they become active around 7 times throughout our lifetime. If they catch you at the wrong time, i.e. during a sickness or other extremely trying time in your life, your body's immune system is not able to fight them off and "boom", the cancer cells invade.
You have to have the will and desire to beat this thing. I've said it before and I'll say it again, I think it is my stubborn attitude that allows me to say "I have cancer, but it doesn't have me"! Sadly, some of us will lay down and give in, thinking that there is no hope. It is those people that choose not to fight that will be taken over in mind, body and soul by the cancer and thus experience a shorter life span. In saying that, trust me, I am not naive, if the cancer spreads throughout the body and begins to eat at you from the inside out, all you can do is attempt to maintain a good quality of life for however long you are on this earth.
Going forward, I have made a vow to myself to only allow myself to be surrounded by people that have a positive influence in my life. Life is too short (for all of us) to be stressed out and worrying about things that are not within your control. Stealing a quote..."the only thing you can control in life is yourself".
To sum it all up....I guess I am living proof that the Doctors are only human too. They can only guesstimate statistically, how long you will be around. They told me that the average life span with my type of cancer was 15 months and with me individually, that I could last anywhere from 1.5 to 2 years. Well, here I am at year 3! How do ya like me now!! ;)
I wish everyone a year filled with health, happiness and love. We ALL deserve it!!
I guess before I sign off, I'd better update my overall status.....Still going for brain MRIs every 3 months (next is Feb 15th with a results appt on Feb.28th). The botox shots I received in my leg seem to be wearing off a bit, but I cannot receive anymore until a 3 month span has elapsed. (reasoning is that the body could develop a resistance to the injections if done earlier) So as it stands, I will get more Botox on Feb 11th unless a cancellation comes up.
Until next time.......
Ed
Today, I turned 43 years old....more importantly, today marks the 3 year anniversary of my diagnosis with a stage 4 brain cancer. What a whirlwind experience this has been. I have been at the lowest of lows and the highest of highs during this time. There have been times where I was scared whether or not I would see tomorrow, to more recently, believing that I am still here for a reason. The primary reason is my daughter Faith...I guess we unknowingly named her that for a reason. That child is my shining light, my reason, my purpose. I believe that it is because of her, that I am still on this earth.
The past 6 months have been very trying with friends passing from cancer, to as recently as today, with the news of yet another friend who was diagnosed yesterday with a lung cancer. It is so sad that we are all directly or indirectly affected by this rotten disease. You can't seem to carry out a conversation without the "C word" being brought up anymore. My personal opinion, after researching quite extensively, is that we all have the cancer genes in us, and that they become active around 7 times throughout our lifetime. If they catch you at the wrong time, i.e. during a sickness or other extremely trying time in your life, your body's immune system is not able to fight them off and "boom", the cancer cells invade.
You have to have the will and desire to beat this thing. I've said it before and I'll say it again, I think it is my stubborn attitude that allows me to say "I have cancer, but it doesn't have me"! Sadly, some of us will lay down and give in, thinking that there is no hope. It is those people that choose not to fight that will be taken over in mind, body and soul by the cancer and thus experience a shorter life span. In saying that, trust me, I am not naive, if the cancer spreads throughout the body and begins to eat at you from the inside out, all you can do is attempt to maintain a good quality of life for however long you are on this earth.
Going forward, I have made a vow to myself to only allow myself to be surrounded by people that have a positive influence in my life. Life is too short (for all of us) to be stressed out and worrying about things that are not within your control. Stealing a quote..."the only thing you can control in life is yourself".
To sum it all up....I guess I am living proof that the Doctors are only human too. They can only guesstimate statistically, how long you will be around. They told me that the average life span with my type of cancer was 15 months and with me individually, that I could last anywhere from 1.5 to 2 years. Well, here I am at year 3! How do ya like me now!! ;)
I wish everyone a year filled with health, happiness and love. We ALL deserve it!!
I guess before I sign off, I'd better update my overall status.....Still going for brain MRIs every 3 months (next is Feb 15th with a results appt on Feb.28th). The botox shots I received in my leg seem to be wearing off a bit, but I cannot receive anymore until a 3 month span has elapsed. (reasoning is that the body could develop a resistance to the injections if done earlier) So as it stands, I will get more Botox on Feb 11th unless a cancellation comes up.
Until next time.......
Ed
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