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
Wednesday, November 17, 2010
Monday, October 25, 2010
OCT 25/2010
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
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
Friday, September 17, 2010
Sept 17/2010
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
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
Friday, June 18, 2010
June 18/2010
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....
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....
Friday, June 4, 2010
Saturday, March 13, 2010
March 13/2010
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
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
Tuesday, March 2, 2010
March 2/2010
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)
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)
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