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 :/
Tuesday, May 24, 2011
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 :)
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