My path

Jan. 31 2012

2012-01-31T09:44:00.003-05:00

Hello all!

I guess its been about 4 months since my last post and I guess that is mostly because I grew tired of talking about my life with cancer and all the baggage that comes with it.

I can't recall if I mentioned in my previous post that I now have 3 tumours along for the ride in my brain or not. Anyways...I do, and have now been on low dose chemotherapy for 299 days as of today. My last MRI showed some shrinkage in the newest (and smallest) tumour. The other 2 have not grown any further so the chemo must be doing some good. Unfortunately, the side effects continue to plague me. The worst is the drained energy level. There are some days where I think I could sleep for the full 24 hours! On top of all that, I still have the open site on the top of my head which has gone from a pinhole to the size of a quarter since my last surgery. I have been told in the past by the plastic surgeon and my Oncologist that they cannot attempt to close it while I am on chemo because of my already suppressed immune system as well as the fact that chemo hinders the healing process.
Fast forward to last week.........I received a notice in the mail that when they did a swab culture of the drainage from my head, the results came back saying that there was the presence of M.R.S.A. (Methicillin Resistant Staphylococcus aureus). So, I'm on 2 antibiotics for now until the powers that be decide what is the lessor of the 2 evils.....take me off chemo and perform a surgery to clean out my head, or continue chemo until my body rejects it and then do a surgery.

So until that time, I fight the daily headaches and pains with pill, pills and more pills.
This Friday I will get more botox shots in my lower leg to hopefully let my foot res better. When it wears off, I find that I am walking on the side of my foot which is quite painful as well as my leg has a lot of spasms during the night.

So my friends, that's it in a nutshell!!

Until next time........

Ed

Sept 20/11

2011-09-20T17:30:00.002-04:00

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

Aug 18/2011

2011-08-18T07:52:00.002-04:00

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

July 28/2011 Update

2011-07-28T09:13:00.003-04:00

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

July 26/2011

2011-07-26T21:13:00.004-04:00

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

June 28/11

2011-06-28T17:37:00.003-04:00

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 ;)

June 18/2011

2011-06-18T05:10:00.003-04:00

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

June 7 2011

2011-06-07T01:13:00.003-04:00

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!!

June 1/2011

2011-06-01T04:44:00.003-04:00

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

May 24/11

2011-05-24T04:02:00.002-04:00

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 :/

May 19/2011

2011-05-19T05:46:00.003-04:00

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 :) :) :)

May 16/2011

2011-05-16T04:37:00.004-04:00

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

May 6/11

2011-05-06T03:18:00.006-04:00

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

May 4/11

2011-05-04T03:19:00.003-04:00

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 :)

April 30/2011

2011-04-30T04:06:00.002-04:00

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

Easter Sunday Apr. 24/11

2011-04-24T21:10:00.002-04:00

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

April 21/11

2011-04-21T22:19:00.002-04:00

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.

Angela Visit Apr 19/11

2011-04-19T22:04:00.002-04:00

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".

April 19/11 Day 15 of chemo

2011-04-19T06:49:00.002-04:00

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

Sleep?

2011-04-15T05:22:00.002-04:00

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

Angela Apr 13/11 Day 56

2011-04-13T08:29:00.002-04:00

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

Angela Apr 11/11 Day 54....hopefully the last!

2011-04-11T22:53:00.002-04:00

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!

April 10/2011 Chemo Day 6

2011-04-10T11:17:00.002-04:00

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

Angela Apr 10/2011 Day 53

2011-04-10T10:47:00.002-04:00

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!!

Here we go again.........

2011-04-08T19:25:00.002-04:00

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

Angela Apr. 8/2011 Day 51

2011-04-08T19:21:00.002-04:00

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!!!!! :)

Angela April 6/2011 Day 49

2011-04-06T21:49:00.001-04:00

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!

Angela Apr. 5/11 Day 48

2011-04-05T20:47:00.002-04:00

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 Apr. 1/11 9pm Day 44

2011-04-01T20:47:00.002-04:00

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.

Angela Mar 31/11 1045pm Day 43

2011-03-31T22:43:00.002-04:00

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.

Angela Mar 30/11 Day 42

2011-03-30T19:34:00.002-04:00

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.

Angela Mar 29/11 9:45pm

2011-03-29T21:39:00.002-04:00

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

2011-03-29T08:46:00.004-04:00

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.

Angela Mar 28/11 Pt 2

2011-03-28T16:41:00.004-04:00

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.

Angela Mar 28/11 Day 40

2011-03-28T09:18:00.002-04:00

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

Angela Mar. 24/11 Day 36

2011-03-24T19:30:00.002-04:00

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 Mar 21/11 9am Day 33

2011-03-21T09:04:00.002-04:00

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.

Angela Mar 16/11 10pm Day 28

2011-03-16T21:37:00.002-04:00

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.

Angela Mar 15/11 1015am Day 27

2011-03-15T10:12:00.002-04:00

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.

Angela Mar 14/11 10am Day 26

2011-03-14T09:47:00.002-04:00

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 Mar 13/11 9:30am

2011-03-13T09:14:00.002-04:00

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.

Angela Mar11/11 10am Day 23

2011-03-11T09:47:00.002-05:00

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.

Angela Mar 10/11 10pm

2011-03-10T21:56:00.002-05:00

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. :)

Angela Mar 9/11 9am

2011-03-09T08:58:00.002-05:00

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 Mar 7/11 9am Day 19

2011-03-07T08:56:00.002-05:00

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

Angela Mar 6/11 9:55am

2011-03-06T09:49:00.002-05:00

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.

Angela Mar 5/11 9:30am (for Les)

2011-03-05T09:30:00.003-05:00

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 Mar 4/11 1400 hrs

2011-03-04T13:59:00.002-05:00

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.

Angela Mar 4/11 0900hrs

2011-03-04T08:48:00.002-05:00

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.

Angela Mar 3/11 @ 2130 hrs

2011-03-03T21:21:00.002-05:00

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

Angela Mar 3/11 @ 0915hrs

2011-03-03T09:07:00.003-05:00

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.

Angela Mar 1/11 @ 2100 hrs

2011-03-01T20:19:00.002-05:00

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

Angela Mar. 1/11 @ 0915 hrs

2011-03-01T09:10:00.002-05:00

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.

Angela Feb 28/11 @ 1630 hrs

2011-02-28T16:19:00.002-05:00

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

Angela Feb 28/11 @0700hrs

2011-02-28T06:57:00.003-05:00

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

A glimmer of hope Angela Feb 27/11

2011-02-27T17:54:00.001-05:00

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.

Angela Feb 27/11 @ 0900hrs

2011-02-27T09:04:00.002-05:00

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 ;)

Angela Feb 25/11 @ 2000 hrs

2011-02-25T19:47:00.002-05:00

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.

Angela Feb 25/11 @ 0845hrs

2011-02-25T08:40:00.003-05:00

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.

Angela Feb 25/11 @ 0730hrs

2011-02-25T07:38:00.002-05:00

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.

Feb 23/11 @ 2110hrs

2011-02-23T21:09:00.002-05:00

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

Feb 22 @ 11pm

2011-02-22T23:00:00.003-05:00

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

Feb 22 @ 1:30pm

2011-02-22T13:18:00.002-05:00

MRI at 2pm today and Family Conference w/ Doctors after that..

Angela Feb 22/11 1030hrs

2011-02-22T10:32:00.002-05:00

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.

Angela

2011-02-21T14:46:00.000-05:00

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.. :(

Jan.12/11 CANCERVERSARY!!

2011-01-12T09:54:00.001-05:00

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

November 17/10

2010-11-17T11:03:00.003-05:00

Hello again:

Just a bit of an update on the Botox injections (all 25 of them) that I received a few weeks ago etc...

I noticed an improvement within 2 days of receiving the injections. My left leg muscles have relaxed enough that my foot is finally flat on the ground. Prior to this, I walked on the side of my foot which was pretty painful as well as left me prone to twisting my ankle! So, as of now....I am walking somewhat better but am still cursed by the clonus(spasms)and dropfoot on the left side. All in all though, it has been a small miracle for me because not being active was really getting me down.

On November 9th, I had a couple of small episodes that felt like focal seizures. I have not had anything like this since my last surgery in August of 2008. I bit the bullet today and called the Cancer Clinic, told them the issues and am waiting for them to get back to me. I'm hoping it was just a "fluke"....we shall see :/

On a good note, I finally bought my dream car..a Cadillac! I love it :)

My next "scheduled" MRI is Feb 15th.

Ed

OCT 25/2010

2010-10-25T23:34:00.003-04:00

Hello again:

Firstly, I am saddened to have to inform you that my friend Steve Phillips has passed away after a 2+ year battle with cancer since my last blog. Steve was a wonderful friend, father and husband. Too young at the age of only 45,to be leaving this earth. My thoughts are still with Kathy and the kids, as well as the rest of Steve's family; that they may continue to love life and carry the cherished memories of Steve with them every day.

I just returned from my 3rd trip to St.Maarten this past weekend. It was a relaxing holiday and I was ready to come home after the 2 weeks away. Today I received my results from my last MRI on Oct 1st. Everything as come back with positive results with the exception of more scar tissue build up which may, over time, cause increased headaches. (thank god for tylenol!!) So yet again, I have danced with the devil and won! (I hope its a long song like "Stairway to Heaven") lol

I am pretty much settled into my new place in St.Thomas although I still do miss the "Burg". I'm sure over time I will meet some new friends etc.

This Friday, they are going to try an increased dosage of Botox into my left leg to see if it can weaken the spasticity and allow my foot to drop. I'm going to have to find a "left foot only" store if not, because I am wearing out shoes like crazy!

I think I am more at peace with my situation now because I have come to terms and accepted that this is my "new" life. I will certainly continue to be stubborn and fight this, but also have become more aware of my limitations now.

I will continue to strive to be the best role model for my little girl and will always make time for those whom I hold close to my heart. (mushy but oh so true)

Until next time.........

Ed

Sept 17/2010

2010-09-17T10:07:00.003-04:00

Just a quick update on whats been going on over the past few months. I finally bit the bullet and moved back to St.Thomas. The driving back and forth to see Faith and participate in her activities was getting to be a bit much on me. It will be so nice to have her "just around the corner" as well to have all of my family close by. Admittedly, I am missing SOME of my old life in Tillsonburg. I'll miss my coffee and BS sessions with Al and the boys Chad and Mat. I'll also miss some of the true friends I made there...the ones who were there through thick and thin...they know who they are :) I could go on about what and/or who I won't miss but that would just erupt into a gossip session which I am not about to stoop to. I am looking forward to making some new friendships here as well as re-kindling some old ones.

Health wise, things are pretty much status quo,my next MRI is October 1st but will not get the results until Oct 25th because I am headed south for 2 weeks beginning Oct 8th for some much needed rest after the big move. My left leg is still the biggest hindrance to my daily life. There is nothing more frustrating than not being able to participate and enjoy the things I used to do. Nevertheless, I continue to trudge away through this nonsense and will continue to do so for as long as I can.

I still feel its my Scottish heritage (a.k.a. stubbornness!) that has allowed me to surpass what the Doctors told me what to expect. Jan 12th 2008 was my diagnosis date and they said I'd last 1.5 to 2 years beyond that. Its coming up on 3 years soon so I'll just continue doing what I'm doing.

My thoughts and prayers go out to Steve P. and his family. Steve is on the downside right now with his cancer battle. Keep fighting Bro!

I'll update more after I receive my MRI results.

Ed

June 18/2010

2010-06-18T16:51:00.003-04:00

Well I just returned from my follow-up appointment from my latest MRI. Everything still seems to be holding its own. My neuro-oncologist figures that a lot of my newer symptoms are just coming about now because I have fought off what a "normal" person would have experienced over a year ago. All that is fine and dandy, but I still feel like a bag of crap. Experiencing more pain on my entire left side, sleeping 12-14 hrs a day and overall just a bad state of mind some days.

I recently bought a nice 30' trailer at Happy Hills trailer Resort....that lasted a few weeks until I realized I just couldn't do it on my own. So yeah, its now up for sale!! Sure miss having that "significant other" around during all this turmoil! I guess paybacks are a bitch :<

Other than that, not much more to tell.
Later....

06/04/10

2010-06-04T07:08:00.000-04:00

MRI this morning at 0530hrs

Follow up in a couple of weeks

E

March 13/2010

2010-03-13T13:59:00.003-05:00

So the results are in....I've skirted the inevitable again. Not sure how I'm doing it but I am! Waiting for yesterday's results was a little more nerve-wracking than usual. I guess this was probably due to the fact that it was my first MRI since my estimated "life expectancy". Since "D-Day" has came and went without any bad news, I've decided to wholeheartedly start pursuing things that will make things easier for me. First and foremost is trying to get my leg at least semi-functional so that I can walk for more than a block without the aggravating hip and back pain that has so far accompanied that task. Out of everything that has happened to me over the past 2+ years, I have to say that my leg has been the most discouraging and frustrating part of this journey. I'd love to be able to go for those long walks through the park or on the trails with my daughter again.

With that being said, my Neuro-Oncologist, along with my Orthotist have approved me to begin the process of testing the Bioness L300 system on my leg. In essence, what this system does is provide FES (Functional Electrical Stimulation) to my leg by means of sending low-level electrical impulses to the common peroneal nerve in the leg, stimulating the muscles to lift the foot at the appropriate time while walking. The only possible obstacle may be insurance coverage, but I'll tackle that $7000 issue next week!

The Doctors still also want to investigate the use of Botox in my leg also. The downfalls to that are that it only temporarily loosens the leg muscles to decrease the tone(stiffness) and it may cause my leg to become too weak to even walk as I do now. I guess the upside to that one is that again, it would only be temporary until it wears off. Lastly, I need to start physio soon to help loosen my leg up somewhat befere atrophy sets in. Its too difficult to do at home alone unfortunately so I'll either do it in London or hopefully here in Tillsonburg at a private clinic.

Thanks for all the previous positive comments :)

'Til next time....

Ed

March 2/2010

2010-03-02T08:10:00.003-05:00

Wow, its been almost 3 months since my last post. I guess I can only point the finger at "life events" that have prevented me from writing earlier. My last MRI was in late February but I do not get the results until March 12th at my follow-up appt. I think this is the longest time frame I've had to wait between the actual MRI and the results. I guess its a good thing I don't have any hair to pull out!!

Since my last post, I returned to St.Maarten for a week long holiday. My parents came with me this time. I'd go back there tomorrow if I could....I think cabin fever is setting in! We weren't home for more than 3 days from the trip when my mother received a call that her mom was not doing so good health-wise and that we should try to get there ASAP. Sooooooo, off we went, my mother and I to England via Amsterdam (it was the quickest at last minute notice) Unfortunately we missed her passing by just over 2 hours but at least we were there. Needless to say, it was rather a sullen 2 weeks spent in England and Nana, may you rest in peace now.

I'm still waiting to hear from the London Regional Cancer Clinic about therapy for my leg and the possibility of Botox injections to loosen the muscles in my leg. Its ONLY been 6 months since this was supposed to be set up but nothing has happened so I guess its time to become the squeaky wheel.

On the subject of my leg and walking etc, I went to Hamilton yesterday to see an Orthotist that has been working with me, trying out different A.F.O's etc (ankle-foot orthotics which really are just the first step in trying to correct the underlying problem) I've had no luck thus far but when I went in yesterday, we trialled an electronic device that has just recently became available in Canada. Without boring you with all the details, its called the BIONESS L300 and it straps to your leg and wirelessly sends electrical pulses to your muscles to move your affected leg. This is the first time in 2 years that I've actually thought that maybe, I'll be able to walk for more than a block without the pain that has been associated with it.

According to the Orthotist, I really need to begin a therapy regime to loosen the muscles in my leg before we can continue testing this device and I also need to see if my insurance will cover the $7000+ price tag for it. In the end, there may be a light at the end of the tunnel as far as my walking is concerned. Without sounding too cliche, ....don't take your health for granted, enjoy what you have in life...something as natural and basic as walking, can be swept out from under you just like that!!

I will update my blog after March 12th when I get the results of the MRI.

Sincerely,

Ed

Oh...one more thing. Did I tell you that I've proven the doctors wrong so far?? I've surpassed my "expected life" of 1.5 to 2 years back in January. (yay me)

Dodged the Bullet Again

2009-12-05T13:32:00.003-05:00

Had another MRI about 2 weeks ago and it seems I've dodged the bullet again! The results came back favourable. No new growth observed, just a lot of scarring. My Oncologist wants to set me up to try receiving botox injections in my left leg to see if it will reduce the stiffness. If not, at least I'll be wrinkle-free (on my leg anyways!) If the treatment does not work, it is only temporary anyways and will eventually return to its buggered state.

Other than that, I guess everything is status quo for now, which is a good thing. This coming January, I will have beaten my prognosis date of 1.5 to 2 years. I guess its time to plan a trip to celebrate!!

Happy Holidays to all and enjoy each other.

Ed

November 7/2009

2009-11-07T08:22:00.002-05:00

Hi!! Remember me?

Guess its been a while since my last update (Sept 1st) so I am forcing myself to sit down and write a bit before I get out of practice!

Sooooo, I am scheduled for another MRI later this month with a follow-up appt on November 27th. Again I'll be hoping for another 3 month "ticket to life". Its difficult living this way some days...not knowing what lurks around the corner. The same I suppose, could be said for all of us but when you have a "known" terminal condition, it just keeps you on your toes I guess.

Ok, on to some more upbeat news....I FINALLY got my driver's licence back. 14+ months of not being allowed to drive (legally) was pretty stressful. Thank you to my family and friends who were there for me to assist. I cannot however, give thanks to our gov't for being compassionate of my situation. I'm truly disappointed that it took over two and a half months PAST the required time for me to be "seizure-free" for the gov't to review and approve my application. Between the M.T.O. and the F.R.O., I'm not sure which ministry needs more of an overhaul!! Oh, and the other condition of me retaining my licence is that I get "road-tested". How ironic that our gov't decided to farm out the DRIVETEST centres, only for them to go on strike now! They have been on strike since August 21st with no agreement on the horizon. At least they have given me until February of next year to accomplish this. I feel for the young kids who are anxiously waiting to get their G2 licence. I guess the $110 million dollars that we taxpayers are doling out over a 10 year term is not good enough for the now privatized DRIVETEST (owned by Serco DES Inc) The Provincial gov't has also politely informed me in writing that they "will NOT intervene although there is a mediator available to help the parties reach an agreement at the bargaining table." UGHH!!! Ok, 'nuf said about that!

Had a wonderful, relaxing trip to the island of St.Maarten in October. I'm ready to go back already though! Met some nice Canadian folks down there and the food, accomodations and service was terrific!

Faith is back playing indoor soccer again this year. Thank goodness I have my licence back to attend every Sunday....and I am coaching also. I would have loved to have coached outdoor as well but my leg would not be able to handle it.

On a final note (and I still am at odds with the whole concept of it) I am officially retired from Cami Automotive Inc as of this past November 1st. Cami was a huge part of my life, I loved my job and the people I worked with (although I'm sure some would say I have a funny way of showing it!) I miss that place. I miss being able to help "make a difference".

Until the next post....

Ed

Sept 1/2009

2009-09-01T10:27:00.003-04:00

Wow, September 1st already. Hard to believe that summer has came and gone pretty much already. I think I missed the 2 weeks of summer we DID have...probably moving or some other mundane task.

The Day Surgery I was scheduled for today has been pushed out until this Thursday Sept 3/09. I'm sure they just didn't have a sharp enough knife available yet to get through my thick head! ( I can just visualize all the head-nodding going on after that comment!!)

Its been a bit of a tough go recently for me, both physically and emotionally. With the constant 24/7 head-aches and the still unexplained numbness in my face and hand, I guess I've begun to lose faith in my doctors. Perhaps there is no explanation for it all...who knows. I guess it just gets frustrating after a while. I have even gone so far as to adjust my own meds to try to alleviate some of the head-aches etc. Might not be the best decision to have made but I needed relief in some form.

Emotionally I guess this cancer stuff just wears on you. I've been trying to "live" since January 2008 with a prognosis of 1.5 to 2 years and then here I am, about 1 year and 8 months into it and find myself living for every 3 months (MRI every 3 months) and just awaiting the day to come when they tell me....."its back". Yeah, I know....not the most positive thought in the world but a true thought of mine....and this is my place to voice it I guess. I find myself just wanting to retreat more and more often "into the cave" just to get away from it all. The highlight of my life is still my daughter Faith, but when she is here, I find it harder and harder to cope with the everyday antics of an 8 year old. Unfortunately, she gets the crappy end of the stick really. Not having a Dad who can do all the fun things that a Dad should be doing with his daughter.

Hopefully things will take a turn for the better once I get my license back. That is, if the M.O.T. Medical Review Board feels that I am now medically fit enough to drive!! I've put in the time they want being seizure-free (1 year) but now its all the governmental red tape and the waiting game. I have truly learned how much driving IS a privilege and not a right over the past while.

Anyways, thats enough of my gripes and whines for now....gotta save some for another blog!

Bare with me if I'm a little "distant" for a while. I think I need to re-group and re-charge the batteries somehow. I am considering a trip soon if all the medical issues would slow down and co-operate just for a bit! I would love to just get away, even if its by myself...just to re-align my thoughts and outlook.

Take care and I'll see you when the cobwebs have cleared!

Ed

Update August 21/2009

2009-08-21T14:50:00.004-04:00

Well that was a busy day!

No major findings on today's MRI with the exception of a build-up of scar tissue. My doctor had not seen the "full report" when I seen him but had quickly viewed the scan.

I will be going in for Day Surgery on Sept 1/09 to have them attempt to close the hole on the top of my head (that has been there since Aug 2008). The Plastic Surgeon is concerned there may be bone and/or skin infection. From what he says, they will cut it approx 3 inches,peel it back and investigate their findings and hopefully only have to remove some "junk". Still no guarantee the hole will heal and close properly with this method due to the radiated skin involved but this is option #2 (option #1 being just to monitor and hope it takes care of itself) If this does not work then it may have to be grafted.

I suppose I should be a bit happier about my results today but I'm just feeling physically and mentally exhausted.

Take care

Ed

Update August 8/2009

2009-08-08T12:50:00.004-04:00

Hi all:

Its been quite a busy past few months with moving TWICE and taking care of all that comes with that. I think I've finally settled into a place that suits my needs physically. That basement apartment I was in might as well had an entrance sign saying "Welcome to the Dungeon". I guess for someone of sound body and mind it may have been ok but it certainly wasn't good for me.

Physically, my body is struggling. I'm sure all the moving etc has not helped the situation but it had to be done. My left leg seems to be getting weaker and weaker. I'm waiting for the day that I seriously sprain or break my ankle. I do have a brace for it but even after 3 fittings, I still cannot wear it for more than a couple of hours. Once I'm settled here, I'll try to re-work it so that I can at least wear it for more than 2 hours.

I'm not too impressed with the London Regional Cancer Clinic as of late. It seems my scheduled MRI's are getting pushed out to around every 4 months instead of every 3 months. Oh well, typical cost-saver I guess ;) A harder pill to swallow is the issue of my license. My Oncologist wrote to the Ministry of Transportation a few months back stating that I have been seizure-free and he felt that I was ok to drive. They wrote back stating that they wanted me to have a min. of 1 year seizure-free status before re-instating my license. I understand the laws etc so I was ok with that. Now my Oncologist is making me wait until my next appt (August 21st) to "discuss" it then. Well by the time all the medical and gov't red tape is waded through, summer will be over and Faith will be back is school. I guess I'll have to wait until Thanksgiving or something like that to take her on a trip.I'm sure there will be a welcoming party for me at the LRCC on the 21st since I was so pleasant with them over the phone this week! lol NOT!

I'd like to thank everyone who lent a hand with my move to the new house. I could not have done it without you and I truly appreciate all your help. ( I also appreciate the offers of help from people that I didn't end up calling on) Its nice to know that you are all there to help in my time of need :)

So.....upcoming MRI on August 21st at 5:30am...Cancer doctor appt same day at 9am.....then a Plastic Surgeon appt at 11am same day to deal with the hole in my head that hasn't healed in a year!

Over the next month or so, I hope to re-connect with you all and attempt to have some type of social contact!!

Thanks for your patience,

Ed

Words to live by....

2009-06-17T15:09:00.003-04:00

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone...

4. Your job won't take care of you when you are sick. Your
friends and parents will. Stay in touch.

5. Pay off your credit cards every month.

6. You don't have to win every argument. Agree to disagree.

7. Cry with someone. It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first pay cheque.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others. You have no idea what their
journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye. But don't worry;
God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood. But the second
one is up to you and no one else.

20. When it comes to going after what you love in life, don't take
no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie.
Don't save it for a special occasion, Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words......In five years, will this matter?

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time.

31. However good or bad a situation is, it will change.

32. Don't take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you
did or didn't do.

35. Don't audit life. Show up and make the most of it now.

36. Growing old beats the alternative -- dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else's,
we'd grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come.

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow, but it's still a gift."

A sad day

2009-06-16T00:33:00.003-04:00

For anyone who has followed my blog on a regular basis, you will have heard me mention the 3 ladies from Cami who have been living with cancer along with myself. Its with a very heavy and saddened heart that I have to tell you we lost Beth Travis today. Beth fought the fight for almost 3 years I believe and was still able to smile right to the end.

I am so glad that I was able to visit with her at the Ingersoll Hospital this past Friday. I will always cherish that moment that her and I shared in her hospital room. She told me she was ready....couldn't take the pain anymore and wanted to be at peace.

I, along with the girls, will miss our lunch dates and Beth's smile and bubbly personality.

May you rest in eternal peace my dear friend.

June 9/2009

2009-06-09T00:22:00.003-04:00

Hello:

I apologize for the lack of blogs over the past month. I find that my life has been in a state of turmoil the past couple of months. I am desperately trying to fix that.

I was just informed that another friend of mine from high school has been diagnosed with the dreaded C-word. I wish this stuff would just go away. Lately I've been growing weary of the fight but I am sure I will snap out of it soon. I feel beaten right now....by an invisible enemy. An enemy who does not care whether it strikes a man, woman or child. I hate cancer with a passion.

I'm looking to move again. I am not looking forward to that either but as I sit here in what I refer to as the dungeon,(my basement apt) I know its in my best interest (health and sanity) to get out of here. Tomorrow (or later today I guess) I'm looking at a house to rent which I think I'd be much happier in. Its more expensive obviously but I think that I cannot allow my happiness for whatever time I have left, to be put on the back-burner.

On the brighter side of things.....I put a call into my local MPP's office to see if they could assist me in fast-tracking the return of my driver's license. My Oncologist wrote to the MTO on May 5th/09 stating he feels (in his professional opinion) I am competent to drive again. He also informed me of the gov't delays that I should expect. (a min. of 1-2 months for them to review it) So I'll just hurry up and wait I guess.

I'm back to not sleeping worth a hill of beans lately again. Not sure of the root cause and I can't be bothered telling the folks at the Cancer Clinic anymore because they just seem to dismiss it anymore. Don't get me wrong, I feel they do some fantastic work there and the staff are amazing...I just feel that a lot of times I'm looked upon as a formality to them when they see me, given my prognosis.

My Family Doctor put me on some "happy pills" a while ago that I think are starting to kick in. Between those and some sleeping pills....all the world will be right again! lol

Not really sure what else to add except that my next MRI will be in July.

My thoughts and prayers are always still with my 3 Cami girls and now also with Steve P.

Later

Ed

Anyways, back to the MPP....they have contacted the MTO and were given the response that my "case is too difficult for everyday staffers" so they are going to involve a Specialist of some sort to deal with it. Whatever!!! My MPP's office said they are supposed to get some more information by June 17/09 and will contact me then.

Spineless Creatures

2009-05-07T16:07:00.003-04:00

Well I see someone else decided they would attempt to slander me by means of discussing a past relationship of mine. Sad part is....they obviously have no clue of what transpired. I could not help but laugh when I read it. I have never claimed to be the King of Relationships anyways. I know I've made my share of mistakes but then again, haven't most of us? The majority of what they wrote was false and slanderous to say the least! (Especially some of the "serious" things they wrote) I have changed the settings on my blog to stop this kind of childishness. Apparently some people are more concerned with other's lives while their own world falls around them. And not surprisingly, the person lacked the testicular fortitude to leave a name. At the end of the day, it goes like the old saying..."There is his side of the story, her side of the story and then there is the truth" Kinda makes me glad I didn't move back to St.Thomas some days ;)

PS: I did delete the comment because of the false statements in it.

Ed

MRI Update

2009-05-04T14:19:00.002-04:00

Results of the MRI showed no new growth at this point, only the residual from my last operation. Will continue to have an MRI done every 3 months to monitor for new growth etc. Thank you to all who sent well wishes and prayers etc.

Ed

Stay tuned....

2009-04-30T13:27:00.001-04:00

Had my MRI yesterday. Results will be known on Monday when I go for my follow-up appointment at the Cancer Clinic .

Ed

Well didn't that start a little fire!!

2009-03-29T07:37:00.003-04:00

Hello all, its me, Ed McDade, owner and author of this blog page. I'm happy to announce that my move is pretty much complete. Thank you to all my family and friends that assisted and/or offered their help (I could not have done it without you!) I think I should have taken that trip AFTER my move instead of before it! What was I thinking! lol

Ok, now its time for me to respond to the 27 comments left after I posted my last blog. Firstly, this site is NOT intended to provide uplifting inspiration or anything else for that matter. It is intended to allow me a venue to express my innermost thoughts, whether they be good, bad or indifferent. If it does inspire or make people think about whats going on in their own life, then great, that's an added bonus. In the end, I do appreciate everyone's comments although I disagree with the ability to leave "anonymous" signatures after you post. I think if you have the need to reply in a manner that may be deemed non-positive or could be taken out of context, you should at least have the courtesy to send me an e-mail, so I can reply to you personally without the rest of the on-line world being involved.

I am not here to slam,demean or demoralize anyone. Anything and everything I have written is the truth, and yes, sometimes the truth hurts. But in the end, the truth prevails. I will be ensuring that this blog is printed off and a copy goes to my daughter when the time is appropriate. If I am not around to explain to her myself, at least she will know that this is what I thought about and dealt with during this battle. There are enough people (both family and friends) that I trust will make sure that Faith remembers her REAL daddy and what he was like, what he stood for etc.

In closing, I'd like to once again thank everyone for their comments, whether I or anyone else agreed with them or not. In the future though, please attach your name or at least shoot me a mail saying "hey Ed, that comment was from me, and here's why I said it". That way, I'll at least know that you are not replying to the blog just for the sake of stirring the pot or otherwise.

Take care,

Ed McDade

ed_mcdade@hotmail.com

Still kickin'

2009-03-12T20:31:00.002-04:00

Its been a while since I've written anything on here. My only excuses are that I've been tied up in a lot of family matters that I won't bore you with and that I am finally preparing to move in a couple of weeks. The packing alone is a slow and tedious process when you've only got one good functioning leg. I can certainly empathize with one of our great Canadian heroes, Terry Fox, who battled daily to just "keep on moving along". My left leg will never get any better, it will always remain about 30-40% numb and I'll never have much control over its actions. That has to be the most frustrating part of my life right now. Not the fact that I am, according to the Doctors, more than 1/2 way into my life expectancy of 1.5 to 2 years. I can deal with that at a later date....its the "here and now" that is ticking me off. For those of you that know me personally, you'll remember me as always on the go, never afraid of a little hard work or sweat and more than willing to lend a helping hand.

These things have been taken from me now and that infuriates me to no end. Now I have to rely on others to take up the slack where I used to be able to. For 6 years I have been picking up my daughter every other weekend as well as taking her to indoor and outdoor soccer and dance on my off weekends without any grumbling. The Ministry of Transportation, along with my Oncologist, decided that due to my condition, they would revoke my driver's licence last March 2008. I was able to get away with it until about a month ago when I got pulled over by the town coppers. They must have decided to run my plates and of course it came back saying "license suspended due to medical reasons". Luckily I was able to get away without a fine but was informed that the next time I would face a minimum fine of $5000.00 all the way up to $25000.00. When I go for my MRI next month, I will be talking with my Oncologist about the possibility of getting my license back. In the meantime, stubborn old me will probably continue to drive (in stealth-mode of course). Faith's mother, however, will not allow Faith to be in the car with me. I have mixed feelings on that but I can see her point of view to an extent.

I guess where I am headed with this is that I am not happy with my daughter's mother right now for a couple of reasons...firstly, she seems to think that my family should do some of the driving to transport Faith to my place (50km each way) since she won't be able to do it all the time. Excuse me but my family did not give birth to OUR daughter, we did! Secondly, Faith's mom also is wanting MORE support money from me even though we both agreed on a set amount after my income was reduced to 60% of what I used to make. The amount agreed upon was 60% of what I used to pay her. To me, that seems only fair and I am sure the Family Responsibility Office would agree. I guess I am supposed to suck it up, deal with a terminal illness, pay for meds and equipment that are not covered by my Drug/Benefit plan, while she continues to live her life without ANY changes to HER finances. I have offered to go above and beyond what I am legally responsible to pay, between what I can give her, and what Canada Pension Disability can contribute for Faith, but she has not got back to me on this. I am by no means trying to slam this person but this is what I deal with. Its no wonder that some days I just want to shut the whole thing down and "log off" from the world,and go into hibernate mode!

I apologize for hammering this out on my blog but I guess this is my only place to vent without fear of repercussion since my ex has never bothered to read my blog from day one.

On a bit of a more positive note, I just returned from a trip to Punta Cana with a friend of mine. The trip was enjoyable but it physically drained me. I don't think I'll be travelling too far in the near future. I now just need to focus on getting this move completed and by that time, hopefully some warmer weather will be here and I can breathe again.

Please do not think I am feeling sorry for myself because I am not....I am only voicing my frustration of my physical limitations and my frustrations with certain people. I will continue to persevere and trudge onward as I have always done. Nothing will stop me, not a woman, not a cop or anything else who decides to get in my way. What have I got to lose right!! (wink)

I shall close off now and wait to hear all the shocking comments. lol

Remaining strong-willed and positive......

Ed McDade

Moving

2009-02-08T18:52:00.003-05:00

Hi all:

Well the search is over. No more house-hunting for me! I've finally found a place in Tillsonburg. The original plan was to move back to St.Thomas but I was unable to find anything that I felt I could call "home". My new place is all one level, which will help me immensely and is located just on the edge of town. In the nicer weather I could probably walk to the nearest Horton's and Burger King etc. I took Faith through the place this weekend and she was excited about it, which is all that matters to me. Moving, even though Faith does not live with me full time, can be such an "event" for a kid so I am glad that she felt excited to move. A couple of selling points I threw in were that right next door, there was a paddock that had donkeys and goats which she could feed through the fence in the summer. The natural fireplace in the livingroom also went over well when I told her that we could have weenie roasts without even leaving the house! lol

On the down side of moving, I'm now stuck with 4 appliances that I purchased in thinking that I was moving to Handford Place in St.Thomas (see 2 or 3 blogs ago) so if any of you out there know of someone looking for a fridge(with ice and water dispenser), electric stove,washer and gas dryer that are 3 1/2 years old or less, let me know!! (they are all white in colour and in great shape)

On the health side of things I'm still experiencing daily morning headaches which I attribute to the weaning of the steroid I'm on. My Oncologist told me to let them know during my last appointment if the headaches continue but to be honest, I can't be bothered. All the seem to do to remedy the headaches is increase my dexamethazone steroid (used to combat brain swelling). Then a month or so later, attempt to wean me off of it. I don't see the justification in doing this back and forth stuff so I will just endure the headaches until my next MRI in April. My left leg seems to be slowly getting weaker. I'm not sure if this just something that will continue to worsen over time or if in fact there is something that can be done about it. Again, I'll bring this up in April at my next appt.

To my girls from work that are fighting the Cancer battle... Bev,Beth and Heather, keep fighting ladies, we've got more to live for than to die for ;)

Until next time,

Peace.

Ed

Wake me when Winter is over

2009-01-25T06:47:00.003-05:00

Ok, the cold winter weather can leave any day now! I'm not sure about you but I've already had enough of the sub-zero temperatures and the snow. This winter season has been like the Winters we used to get when I was growing up. Lots of snow and temperatures that would make your nostrils stick together! Welcome to Canada eh!

I received a Facebook message the other day from a fellow Cancer survivor's mother who gave me some much needed fuel and helped to remind me why I do this blog and that I CAN make a difference, in my own life, as well as helping others to "see the forest through the trees". Here is an except of what this kind lady had to say:

Although we haven`t formally met, I`ve been following your blogs for some time. Heather arranged it so that I could access both your story and Beth`s....and I must say that I have treasured the chance to do so. The journey each of you has been reluctantly taking, simply takes my breath away...and the way each of you has shared the reality of it all, on your computers, is almost unbelievable. Through the words you have shared, you are giving each one of your readers a gift....a priceless gift. Heather`s Dad and I both thank you Ed......and we want you to know we have kept you in our thoughts and prayers ever since Heather put us in touch with your blogs.

What a powerful team you, Beth, Heather and now Bev, have become....each supporting one another.....and without even knowing it, being supported by many others. For example you are each on prayer lists of Ingersoll churches such as St. James and First Baptist....and I can add that your names are remembered in churches in both PEI and Welland...so .don`t you wonder how many more are thinking of you each and every day.....certainly more than you have ever imagined.

Aside from wishing you well Ed, I want to tell you that your writing skills are excellent...and they have continued to grow....spelling, grammar and organization, all tempered with poignant reality and touching inserts of humour...what a balancing act...you`re just amazing. Don`t know what your background has been in terms of education, but clearly you are a gifted writer...was this always your strength or has it been a recently acquired skill. Don`t doubt the value of sharing your thoughts and words Ed... you`ll never know how many people they have impacted....and how many of these people will remain unknown to you. So as I say to Heather..." .Hang in there....and keep on keeping on."

Its comments like this that keep my motivation level high and remind me of all the reasons for fighting my "creeping Charlie". I have been blessed with a beautiful daughter, a wonderful family and amazing friends who have all stepped up to the fight, right along side of me. Who could ask for anything more?!

As for the current status of my moving to St.Thomas, my family and I are continuing our search for something suitable for me. I truly do not want to move into an apartment complex or anything like that for Faith's sake. I want for both of us to be comfortable and at peace in our new home and for me, that means being able to play in the backyard without having to pack up and go to a park, or for me not to stress when she has friends over and they bellow out the "little girl screams" just because they are having fun. I'm sure that something will turn up in the near future for us :)

Well its Soccer Sunday....Faith plays indoor soccer in St.Thomas and I still try to coach her team (or at least be a human pylon). I thoroughly enjoy playing with all the kids every Sunday. It boils down to more than teaching them basic soccer skills too, it has a lot more to do with teaching them right from wrong, basic manners, sportsmanship and friendship. Soccer Sunday is one of the places where I know I will always walk away from with a smile on my face from the hour of fun we had.

On that note, I'd better get my gear together and start my day.

Thanks for everyone's continued support of our fight against the "C" word.

Much love,

Ed

(and I am sure I can, with confidence add Heather's, Beth's and Bev's name to this.) Keep fighting the fight ladies, we are worth every struggle!)

Back to business

2009-01-15T05:19:00.003-05:00

Thank you to all that tossed some prospective housing opportunities my way yesterday. I spent some time with my mom and dad last night and may have possibly come up with "Plan B". Details to follow in a week or so. It was nice spending some one-on-one time with the parents last night after all the "events" that have transpired in our lives over the past few months. It was actually relaxing!! :)

Brad and Jenn Norman...what else can I say about you two fine folks. Once again, they pulled through and sent me a personalized official Calgary Flames jersey with the team's autographs on it. You guys are the best!( of course with Cassie and Jake right beside you)

Any length of sleep still eludes me it seems. That holiday can't come soon enough although I think the idea is realistically going to have to be shelved until I get this housing nonsense taken care of. The rest of the "pile" can just wait!

Ahhh, and before I forget.....thank you all who sent me the birthday cards, electronic wishes etc. Your thoughtfulness seems un-ending :)

Have a splendiferous day!! (feel free to use that Ed-ism)

Til then....

Ed

Caution!! Venting Time...Beware!!!

2009-01-14T02:33:00.002-05:00

So there I was, bringing 2009 in on a sad note to begin with....my daughter's Grandma passed away on New Year's Eve. I got to thinking that with any good fortune whatsoever, that will be the end of an otherwise challenging year and that come that ever so "magical" midnight hour, the slate would be wiped clean and I'd be set for some positive days to come!

Well, it didn't take long for that bubble to be burst I'll tell ya!! Between family and friend "challenges" that have decided to pop up, its been like playing "Whack-a-Mole" at the local Fair! Is it 2010 yet??

To top it all off (and we are only at January 14th) is the news I received yesterday regarding my move to St.Thomas. Apparently, only 15 or so days before I was to turn my life inside out and upside down by moving closer to my family and daughter, my new landlord, Mr. Rene Buttazzoni decides that he has changed his mind and does not wish to rent his vacant house to me, or anyone else for that matter. Instead, I've been told, he wishes to put it back on the thriving real estate market in St.Thomas (oh, thats right, the same place where the Sterling Facility, along with undoubtedly numerous tier one, two and three suppliers, will be shutting its doors in March of this year, thus putting a few thousand unfortunate souls out of a means of putting food on their family's table)

Normally, I would not be too upset with this type of behaviour, but I was also told that it was his daughter who convinced , or should that read coerced him into this decision! Unbeknown st to her, the financial burden it had already put on me by having to purchase 4 appliances for this home, pay more rent as well as uproot my house and home of the past 6 years in the Tillsonburg area. Oh and the deal was supposed to be that I'd move in Feb. 1st and would also remain obligated to my current home until Mar. 1st. So here I sit now, with less than 45 days to find a home, hopefully in St.Thomas and if not, at least the surrounding area.

For anyone who may read this and may know the Buttazzoni family, please send along my heartfelt thanks for kick-starting my 2009 into high gear. I think if I tilt my plate to the side, it may allow a few other important things to slide off and onto the floor, to be forgotten about, while I add this proverbial steaming turd to an already over-flowing plate of crap to deal with.

If anyone out there knows of a decent home for rent, I am looking for something with few stairs, a minimum of 3 bedrooms and if I'm putting a wish list together, it'd have Central Air, a bathroom on the main floor(s), an attached garage, a private yard for Faith to play in and be located within 25km of St.Thomas. I'm also looking to pay no more than $800/mth. Yes,I KNOW thats pretty much a mortgage payment but have you ever gone to the bank and said "Hi, I've got a terminal cancer, can I borrow some money please?" lol

Ok, now that I've blurted out my frustration, you may now return to your regularly scheduled programming. I apologize for the interruption :)

No worries though folks...I'll be back to "normal" soonest!

Til next time,

Still sincerely and thankful,

Ed

MRI Results

2009-01-09T18:23:00.002-05:00

Well, this is one of very few times you will hear me say that I am GLAD I was wrong!! Today's results showed no positive tumour growth in the brain. I got to view the MRI scans and did not notice any "mass" growing either.

A few things that did catch the attention of my Oncologist were that there is still swelling around the brain where the last resection was done. He will be scheduling me an appointment to see my Neurosurgeon to review that as well as the small hole that remains in my skin. This hole is allowing water and God knows what else to get in and out of my head, leaving me susceptible to infection and/or the possibility of more surgery to clean it out. They want me to remain on the steroids for now to continue to fight the brain swelling but have introduced another weaning schedule to try and get me off of them (or at least to a lower dosage to minimize side effects)

The Doc also said that with me going back on the steroid, that it could have raised my awareness of my left arm numbness and motor control since the headaches were being taken care of by the steroid.

The MRI showed substantial scar tissue which could also be pressuring against the Motor Strip causing the left arm issues.

Overall, the Oncologist was satisfied with the results but now since I have recovered 99% from the surgery, he wants to perform an MRI every 3 months. As we've discussed earlier, this type of terminal cancer cannot always be detected when the cells are so small until the begin to form a cluster. I am by no means out of the woods but at least know that I am so far beating the odds :)

All this being said....I'll now breathe a little easier until the next MRI and I'll be doing some re-organization within my own life soon. I'll be moving to St.Thomas during Feb and Mar and am looking to get away somewhere warm and peaceful for a week or two in the very near future just to re-group and analyze where I'm at in my life and where I want to be going forward. Yeah, I know...it sounds pretty deep eh! lol But really, it is!

Thank you to all who have posted thier comments and well-wishes on here as well as through other means. Its positive support like yours that makes this challenge of mine, a lot easier to deal with every day.

With true sincerity,

Ed

D-Day

2009-01-09T03:58:00.002-05:00

Well, the day is here. Sigh

I can't lie and say I've slept like a baby this past week. My mind has been working overtime wondering what the outcome of today will be. I am totally aware that whatever is going on in my head with respect to tumour activity is a done deal already. Whether its there or not...I just want to know dammit. I really don't care for the "unknown".

I think I may have mentioned my own personal thoughts in my last post, on what is going on up there...and unfortunately, I still feel that way. I only say this because I know my body, I know the previous symptoms and previous pain, such as the constant morning headaches. The left arm numbness and loss of fine motor control is the big red flag for me really. Prior to my last surgeries (not many of us can boast of having 2 brain surgeries in less than one year eh!) I felt the exact same numbness etc. This was/is caused by the tumour mass pushing against the Motor Strip of the brain. That being said, I'm walking in there today hoping for the best, but preparing for the worst. Either way, I'll just continue to deal with what is thrown my way and keep tossing it back while telling them "Hey, I'm not ready yet!!"

I will update this page sometime this evening after I return from the Cancer Clinic. My appointment isn't until 3:30pm with bloodwork at 3pm.

Until then...

New year but same hopes and dreams

2009-01-06T05:02:00.003-05:00

Hello everyone:

Wow, hard to believe that its been since December 2nd since I last posted anything on here. I guess so much had been going on in my life with my sister being hospitalized for a month and some other personal stuff, that I felt the need to put my blogging on the shelf for the time being.

Looking back over this "blogless" time frame, I can only wonder what the plan is for each and every one of us. Or are we too busy in the "now" to be concerned about the "future" and forgetting about the "then"? I feel as if I've been given a glimpse of this and I don't like it at all. I truly believe that we all need to slow the train down and "think" before we "act" or we're all going to end up in a crash that will leave us good for naught. ~ok, I'm stepping off the soapbox now!~

I'm very happy to inform you all that my younger sister Angela has recovered remarkably well from her ordeal. She still has some rehabilitative measures to work on, but other than that, she is back to being a healthy woman. Her fiends,co-workers and family certainly came through to ensure that she and her 3 children had a terrific Christmas. Stories like hers always remind me to be thankful for what I HAVE, and not what I HAVE NOT. Once again, I'd personally like to thank each and every kind soul out there who was gracious enough to time, gifts, and love to supporting Angela and her family throughout this crisis.

Ok, onto me now! Geez, its been nice to be out of the limelight actually for a while!! But I guess, as everything goes....all good things must come to an end. Here I am, back to talking about the dreaded "C" word.

On Saturday Jan 3rd, I went for my latest MRI. I should have the results given to me on Jan 9th at my Cancer Clinic appointmet in London. Unfortunately, I'm not expecting good news. I don't say this out of simple fear or anything, but rather out of the symptoms that have returned and are mirror image of the last 2 tumours. My left arm has become very weak again and I notice losing motor control of it too. I have also been experiencing the consistant morning headaches until my Oncologist decided to put me back on the steroid that I had finally been weaned off, about a month ago. So yes, the headaches have subsided but only due to the anti-brain sweeling steroids. (a.k.a. the band-aid to get me through to this next MRI) Along with steroids comes the lack of ability to sleep properly I've noticed. Ughh

So, this Friday, I expect to be told that the tumour has returned. No crying, no whining.....its just back! If my suspicions are true, I will just deal with it the same way I did over the past year when I underwent 2 brain surgeries. Be as positive a person as I can be, be thankful for what I have, not long for what I don't have, and appreciate everything and everyone who is a positive influence in my life.

I have also made the bittersweet decision to move back to St.Thomas in Feb./Mar. I really don't like the idea of leaving my current home but I feel that it is time to be closer to the family and my daughter. I've managed to get a nice house in the north end of the city.

Thank you all for your patience during my "blog-free" time, allowing me to focus on my family and other personal matters during the past month. I will be updating the blog more frequently again and will certainly inform you all of this Friday's results. My appt is not until 3:30pm so don't expect anything until later that evening please.

Wishing you all a prosperous, safe and joyous New Year.

All the best to you and yours.....

Ed

Great news!! Angela comes home tomorrow!

2008-12-02T21:17:00.003-05:00

Hi all:

I just returned from seeing Angela today and as we thought, she is to be released from the hospital tomorrow around lunch time. Hows THAT for progress eh! When I visited her today, she looked terrific. Physical weakness and lengthy walking still hinders her but that will all come with time I am positive.

Thanks go out to Jim FV who kindly loaned out a walker for Angela to use until she is finished her rehab. Thanks also to the other folks who replied to my previous blog with suggestions of the Legion etc.

Angela will be staying with our parents until such a time that she is once again able to carry out her own day-to-day activities.

On behalf of my family, I cannot begin to thank each and every person who sent well wishes, sincere thoughts and prayers Angela's way during this time. I have no doubt in my mind that all that positive energy assisted her on her road to recovery.

As a family, I think we can all breathe a sigh of relief now, knowing that Angela is out of the woods and gaining momentum every day towards recovery. On a personal note, I'd like to thank my family for being able to pull together as a team and focusing on the common goal of Angela's health and doing whatever it took to accomplish that. I'm so proud of all of them :)

With that being said, hopefully, as I said earlier, my next blog regarding Angela's health will be quite boring and short. Hopefully I'll be able to report that she has recovered fully and is back to living a normal life with her 3 wonderful children. Brandon, Courtney and Darren have all been troopers throughout this situation and have been surrounded by the love of my family as well as close friends of Angela.Steve and Krista...thanks for taking Brandon under your wing and to my sister Shirley, thanks for taking Courtney and Darren into your fold.

With sincere thanks and gratitude,

The McDade family.

my lil sis (8)

2008-12-01T22:43:00.002-05:00

Hi all :)

Well its been about a week since I posted anything regarding Angela's condition. I am now happy to report that she MAY be going home this Wednesday. When I say home though, I mean to our parent's home, where she will continue to rehabilitate with the help of Home Care services I am sure. I intend on visiting tomorrow so I will hopefully have some more concrete information after that.

Angela is breathing 100% on her own and has had the trache tube removed from her neck now. All of this is wonderful progress and she continues to get stronger every day. Angela is able to walk with the aide of a wheeled walker right now and is able to complete 8 stairs at the moment. If anyone has a wheeled walker that is sitting in your basement or attic collecting dust, I am sure Angela would appreciate the use of it temporarily rather than have to put out more money for a temp. assistive device that will be used for hopefully only a few months and then tucked away again. Please contact me if you have anything like this. ~ ed_mcdade@hotmail.com ~

Hopefully my next post regarding Angela will be boring to you all in the sense that I will be able to report that she is doing just fine and with no residual effects to her health!! Once again, our entire family thanks each and every one of your continued thoughts and prayers through out all of this.

Sincerely,

Ed McDade & family

Angela's room transfer

2008-11-24T22:14:00.003-05:00

FYI to all:

Tonight, Angela was moved to the General Floor. Her new room number is D5(D zone 5th floor) Room # 111A.

The nurse's station phone number there is 519 685-8500 ext. 54857#

For parking etc, it will probably be easier to park on the second level and take the mezzanine walkway across, then the D zone elevator to the 5th floor.

Thanks :)

Ed

my lil sis (7)

2008-11-24T17:10:00.003-05:00

Good afternoon :)

Well I have to say that Angela has improved substantially over the past few days. When I went up to visit her today, as soon as I walked in the room, I could notice that the "old Angela" was back with us. Her colour looked healthier and she seemed alot more content.

A couple of "firsts" happened today too! Angela was able to shower for the first time since being admitted. That in itself surely brought some feelings of dignity back to her. She also ate solid food for lunch today. She only ate about half of it but it went down with no issues and she was able to keep it down too. These are all very positive steps. I will CONTINUALLY remind her in the future that I was the one to feed her her first solid meal in the hospital!! lol

Angela has been off the ventilator 100% for 24+ hours now. She should bew able to stay off it for good now as long as her lungs continue to improve the way they have been. With that being said, Ang may be transferred out of the Critical Care Trauma Centre within 24-48 hrs. From there,she would go to the floor and be taken care of from there.
They are also considering transferring her to St.Thomas for the remainder of her stay where she would undergo rehabilitation to regain her strength in her legs and arms. Her time in hospital remains unknown but the Dr. I talked to today said at a stretch, another month.Every case is different though and everyone recovers at a different rate, so we will just play it by ear and go from there.

As I'm sure most of you are aware by now, Angela is able to talk since the being taken off the vent and by capping the trache tube. I know for a fact that Angela was relieved to be able to communicate verbally with everyone once again, but if she starts getting lippy with me, I'll un-cap her and put her on the vent myself!!!! ;)

The neurologist (Dr. Brian Young) will be once again reviewing Angela's condition to determine the root cause of her severe weakness in her right arm. Hopefully it is a "local" cause i.e. torn muscle etc and not a neurological issue. I believe they are going to perform an E.M.G. test on her to test for muscle response etc. ( Electromyography (EMG) is a technique for evaluating and recording the activation signal of muscles. EMG is performed using an instrument called an electromyograph, to produce a record called an electromyogram. An electromyograph detects the electrical potential generated by muscle cells when these cells contract, and also when the cells are at rest.)

Thank you to all of you for your continued support, kindness and love throughout this ordeal.

Sincerely

Ed McDade

my lil sis (6)

2008-11-22T05:48:00.003-05:00

Happy snowy Saturday morning to you all!

Ugh, enough of this white stuff already. I think I'm going back to Florida! So, I was up to see Ang yesterday and here are the highlights of my visit:

Yesterday they were in the midst of trying to keep Angela a full 24 hrs off the ventilator to allow her to breathe un-assisted. If this 24 hour trial is/was successful, they'll keep her off the vent for good unless her lungs begin to get too tired. Her being off the vent is the major criteria for getting out of that ward and into the general floor wards.

Also, if the ventilator weaning is successful, they can cap off her trache opening which will allow Angela to talk and possible start eating and drinking some solid foods. More good news is that the "echo-cardiogram" results came back and her heart is in good shape!

They had Angela sitting upright in a chair yesterday but after about an hour of this she became very uncomfortable in her lower back area so they hoisted her back into the bed. I asked if I could operate the hoist but they said no :( lol

For those of you who may be visiting in the near future, I'm sure Angela would appreciate the odd magazine or local newspaper to read. If you're there visiting, you could help with page turning as she is still quite weak. In the next couple of weeks, there is the POSSIBILITY of Angela being transferred back to the St.Thomas hospital but I don't think we are too keen on rushing that in case any complications develop between now and then. Baby steps for everything here.

Sincerely,

Ed

my lil sis (5)

2008-11-19T17:46:00.002-05:00

Hi all:

Just returned from seeing Angela and am happy to inform you that today seemed a better day for her. While my parents were up earlier in the day, they once again allowed Angela to breathe on her own without the assistance of the ventilator. According to the nurse, she did this for 5 hrs today which is a great feat considering she could not breathe at all on her own when she arrived.

The also covered the trache hole so that Angela could try to talk. The nurse said she was able to but didn't say a whole lot, probably due to discomfort in her throat. They have moved Angela down one room on the opposite side now because her old room did not have a lift device that might me needed for her on-going physio. As a bonus, she now has a room with a huge window so she can see the world again:)

Angela's lungs seem to be improving also. Not once while I was there did she cough. The nurse said they were able to suction quite a bit out today, which I would think means its beginning to loosen up.

I still have a concern about Ang's heart though. That issue was kind of put on the back-burner to concentrate on the more pressing issue of the moment....keeping her breathing! lol Perhaps one of the other family members will ask some "heart" questions tomorrow.

I quizzed Ang with some questions that would force her to think back prior to being admitted to hospital. She was able to answer some, but not all questions. I think the question of whether or not she remembered that she and her boyfriend (if you could call the slimeball that) had recently split up. She said that she didn't remember that but our parents had told her. Please tread lightly if you ask her any questions. She does not need any added stress at this time. As for her boyfriend of 5 years....I guess he must have forgotten where the hospital is. No visits, no calls, no nothing.Thats ok though, what comes around goes around ...

Angela has a good network of friends and a loving family that will get her through this bump in the road.

Lastly, but not as important....I am off to Hamilton to see if there is someone there that can try to make a brace for my leg to combat the "drop foot" and "foot inversion" problem I have. Its getting harder and harder to walk on that stupid leg lately.

Ok, thats about it for now.

Take care and thank you for all your continuing support and care for Angela throughout this unfortunate event.

Ed McDade

What a difference a day makes!

2008-11-16T22:26:00.003-05:00

Good evening :)

Well I just returned from seeing my little sister Angela and let me tell you....Wow, what a difference a day makes. I had my daughter here this weekend so I did not go to the hospital yesterday but received regular updates from my family. They told me that there had been improvements but of course, being me, I wanted to see it with my own eyes.

As soon as I walked in the room I got a little grin from Angela and right then I knew that we were going in the right direction. Ang is able to recognize people now, is able to squeeze your hand, wiggle her toes and blink all on command now. This tells me that the fighter in her is still alive and kicking and is not about to give in to this. I sat by the bedside and actually watched TV with her tonight. Throughout my time there I joked with her about various things and I could tell she appreciated my humour (even if it was lame). Every time Angela would cough, she'd raise her eyebrows as if to say "Gawd, I just want to get better and get out of this place.

Apparently sleep hasn't been high on Ang's priority list over the past few days so I told her to close her eyes and rest or I'd duct tape them closed and force her to sleep. ;) Believe it or not, she must have thought I was serious because when I began to stroke her forehead and hair, she closed her eyes for me. That moment between us was precious but even more precious was when I told her I was going to head home and let her rest, kissed her on the forehead and told her I loved her. Angela shocked the heck out of me by mouthing "I love you too" back to me. Needless to say I called mom and dad and told them the news on the way home and they were happy happy happy :)

Even though Ang and I have not been the closest of siblings in the past, I think tonight was a turning point in many ways.

Now that Angela has reached this point, I think that visitors are equally if not more important to her. I think she will be able to appreciate more, the number of people who have come out already, to cheer her on, to pray and hope for a full recovery. Its going to be a long road for Ang, but with the amount of family and friends that have been there to support her thus far, I KNOW she's going to come out on top of this a survivor.

Good night to all.

Ed