Just a quick update of things that have transpired since my last post. Got a call last week from the Cancer Clinic telling me my blood platelet count was extremely low. The normal range is 150 - 400 and mine is a whopping 37! So we did more bloodwork yesterday and will see what the results show in a couple of days. If it drops further, I will have to start getting blood transfusions.
It all makes sense now why I am so totally fatigued, bleed and bruise so easy.I have other symptoms too but won't bore you with them.
My sister Angela is still in the hospital, out of ICU now, but still has a long road ahead of her....again. This was the result of a fall last week where she was found unconscious my myself and Shirley at her apt. She has a fractured skull and has been having numerous seizures since. I will keep you all updated as to the progress of both of us in the coming weeks.
Please keep my family in your thoughts and prayers. Its been a helluva month!!!
Positive thoughts to my friend and former co-worker, Barry V. and family as he/they battle the Big C at this time also.
Probably against my own better judgement, I have begun volunteering again for Wish Upon a Song 2 fundraising again this year. One of the organizations we are raising funds for is the Brain Tumour Foundation ....so how could I not be involved right:)
Visit my Facebook page or contact me for more details.
Wishing you all.......the best!
Ed
Tuesday, July 24, 2012
Wednesday, July 4, 2012
July 4/12 The Unwelcomed Visitor
Well I've pretty much healed from my June surgery. I'd say the outcome was semi-successful. Had a setback about a week after surgery with excessive drainage coming from the site. So off we went to see the Plastic Surgeon again and he said it was NOT normal. Is anything in my life of late normal though? lol So now I have to receive daily Homecare to drain and dress the site until it heals. The Plastics Doc feels the cause of all the fluid may be due to the other Doc (Neuro) not getting all the infected bone / tissue out. Only time will tell I guess.
As for this post's title.......The same day as surgery, I found out the results of my latest MRI. I have another tumour and associated brain swelling etc that goes with it. Since I had only been off my previous chemo (Temodal) for around 80 days and the re-growth was rapid, my Oncologist started my on a different chemo cocktail ( Lomustine) This regimen consists of only taking one dose of pills for one day every six weeks. Compared to the old chemo, which I thought I tolerated pretty well, this one is giving me a couple of irritating side effects. Upset stomach, constipation, fatigue etc.
The major downside of this current tumour is that it has reduced more of my left side function. My left arm and leg are weaker to the point that my arm has stroke-like symptoms of it just "dangling" and my walking is further impaired because of reduced brain signal telling my leg what to do. My balance is not so great either and I've taken a few spills. Only one required stitches though!
I've had about 4-5 focal seizures since surgery....undoubtedly due to the brain swelling causing excessive pressure. I am on a steroid to help reduce the swelling but I personally feel the damage is already done with respect to my leg and arm. Been down this road before and seen the results. The steroid causes weight gain and sleeplessness. Been trying to combat the sleeplessness with a sleeping pill. Some nights it works, others (like tonight) the steroid side effects win over.
In case any of you are curious as to what happens with a focal seizure, for me, my left side is rendered completely useless for about 15 minutes. Unable to lift my arm past my waist and I get a left side facial numbness during the same time frame. My most recent episode was last night around 10pm. I've learned to deal with them but have the fear of losing more and more left side function with each occurrence.
I won't lie and say everything is roses right now. Throughout this whole 4+ year battle, this is undoubtedly my weakest moment, both mentally and physically. The fight is still on 100% but I am wearing thin some days.
I will be following up with the Cancer Clinic on August 7th and will undoubtedly start Round Two of this new chemo at that time. Not sure of next MRI date. Normally every 3 months so maybe September?
As always, huge thanks to Lori, my family and friends who have stood beside me over the years of fighting this thing. You will all forever hold a big spot in my heart :)
I will attempt to attach a shot of my last MRI showing the tumour in the left side of picture, and the associated brain swelling in the right picture.
Much love to all
xx
Ed
As for this post's title.......The same day as surgery, I found out the results of my latest MRI. I have another tumour and associated brain swelling etc that goes with it. Since I had only been off my previous chemo (Temodal) for around 80 days and the re-growth was rapid, my Oncologist started my on a different chemo cocktail ( Lomustine) This regimen consists of only taking one dose of pills for one day every six weeks. Compared to the old chemo, which I thought I tolerated pretty well, this one is giving me a couple of irritating side effects. Upset stomach, constipation, fatigue etc.
The major downside of this current tumour is that it has reduced more of my left side function. My left arm and leg are weaker to the point that my arm has stroke-like symptoms of it just "dangling" and my walking is further impaired because of reduced brain signal telling my leg what to do. My balance is not so great either and I've taken a few spills. Only one required stitches though!
I've had about 4-5 focal seizures since surgery....undoubtedly due to the brain swelling causing excessive pressure. I am on a steroid to help reduce the swelling but I personally feel the damage is already done with respect to my leg and arm. Been down this road before and seen the results. The steroid causes weight gain and sleeplessness. Been trying to combat the sleeplessness with a sleeping pill. Some nights it works, others (like tonight) the steroid side effects win over.
In case any of you are curious as to what happens with a focal seizure, for me, my left side is rendered completely useless for about 15 minutes. Unable to lift my arm past my waist and I get a left side facial numbness during the same time frame. My most recent episode was last night around 10pm. I've learned to deal with them but have the fear of losing more and more left side function with each occurrence.
I won't lie and say everything is roses right now. Throughout this whole 4+ year battle, this is undoubtedly my weakest moment, both mentally and physically. The fight is still on 100% but I am wearing thin some days.
I will be following up with the Cancer Clinic on August 7th and will undoubtedly start Round Two of this new chemo at that time. Not sure of next MRI date. Normally every 3 months so maybe September?
As always, huge thanks to Lori, my family and friends who have stood beside me over the years of fighting this thing. You will all forever hold a big spot in my heart :)
I will attempt to attach a shot of my last MRI showing the tumour in the left side of picture, and the associated brain swelling in the right picture.
Much love to all
xx
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