Good evening
Today I had my second Avastin infusion session at the Bayshore infusion clinic in London. The infusion itself seems to have gone over without a hitch again. Mom and dad came with me this time to drive just in case there any adverse affects after the infusion. I ensured that I did not take my high blood pressure pill prior to the infusion this time so I didn't encounter any low blood pressure issues this round.
After my appointment mom and dad took me for lunch to the Mandarin and then we set off for home. Today was going great until I walked up my driveway. I was within feet of the back gate when my body decided not to play nice and I tripped and fell on the concrete face first. Two issues contributed to that..... First one being my lack of stability on my feet and the second being that the concrete driveway is uneven and broken. At the end of it all I and it up with a pretty good gash above my left eye as well as some good road rash on my left cheek. I will try to attach a picture just for a giggle.
On a happier note, I'm still trying to plan a trip with Faith for sometime in January. By that time I will have about five infusion treatments under my belt. Barring any serious side effects, I need to push on with this planning before things turn south. I think both my daughter and I deserve a week away from the world after all that's been going on lately. The plan is to go to Punta Cana sometime after January 8. It would be nice to spend my birthday on January 12 somewhere more tropical than southern Ontario in the middle of winter!
My left side continues to weaken. I'm still unable now to even raise my arm above my stomach level. Not too sure if this is a Tumour related issue or just long-term side effects of the steroid I have to take for brain swelling. I have seen a lot of reports indicating major muscle deterioration associated with the long-term use of the steroid. Hopefully I'll get a definitive answer after my MRI on December 21. With that being holiday season..... Not sure when I will receive the actual results. Normally it is within a week's time. So to wrap it up, I would say the side effects I have noticed so far with the Avastin treatments are fatigue and tiredness, a hoarse voice and not much else... Touch wood!
Once again I thank everyone for their continued support during this latest adventure.
With sincere thanks,
Ed :)
PS: for some reason it will not let me up load a picture so maybe I will post it on Facebook tomorrow.
Tuesday, November 27, 2012
Wednesday, November 14, 2012
AVASTIN DAY ONE!
Yesterday November 13th, I received my first Avastin infusion treatment at a private clinic in London. I was infused over a one and 1/2 hour time frame to ensure that it had no adverse reactions to the drug. All seems to have gone well with the exception of some fatigue. My next appt will be in two weeks time and I'll be infused over a 1 hour time frame and if I do well with that, all remaining appointments move will be infused over a 30 minute time frame. Everyone's body reacts differently to this drug so I have no idea on what the future holds as far as any side effects and such. Only time will tell and I will do my best to keep you all updated on my progress.
I'm still truly overwhelmed at the response and attendance of the celebration party on November 3rd. That will be a night I will Cherish forever and it certainly played out beyond my expectations. It was my wish to gather with family, friends and old acquaintances before things decide to go south. Happy to say I can cross that off my bucket list now. Next on the list is to get a few Avastin treatments under my belt and take Faith away on holiday in January, health permitting. That child of mine certainly deserves a break from all of this cancer nonsense. She has been a trooper since day one.
Next week on Thursday evening I believe, I'm scheduled for a panel discussion on Rogers London cable TV to discuss ontario's lack of coverage of the Avastin drug when it comes to brain tumours. The host is attempting to have Deb Matthews, Minister of Health present as well as a representative from the Canadian Cancer Society. We shall see who is brave enough to show their face that evening.
Received some correspondence from General Motors of Canada and GreenShield yesterday stating again, that General Motors refuses to cover the drug Avastin to combat GLIOBLASTOMA MULTIFORME brain cancer. That being said, we're still not ready to end this fight for those in the future who are faced with the struggle of private funding to obtain in Avastin to prolong their life here in Ontario.
As always, I thank you for your continued support
Sincerely,
Ed
I'm still truly overwhelmed at the response and attendance of the celebration party on November 3rd. That will be a night I will Cherish forever and it certainly played out beyond my expectations. It was my wish to gather with family, friends and old acquaintances before things decide to go south. Happy to say I can cross that off my bucket list now. Next on the list is to get a few Avastin treatments under my belt and take Faith away on holiday in January, health permitting. That child of mine certainly deserves a break from all of this cancer nonsense. She has been a trooper since day one.
Next week on Thursday evening I believe, I'm scheduled for a panel discussion on Rogers London cable TV to discuss ontario's lack of coverage of the Avastin drug when it comes to brain tumours. The host is attempting to have Deb Matthews, Minister of Health present as well as a representative from the Canadian Cancer Society. We shall see who is brave enough to show their face that evening.
Received some correspondence from General Motors of Canada and GreenShield yesterday stating again, that General Motors refuses to cover the drug Avastin to combat GLIOBLASTOMA MULTIFORME brain cancer. That being said, we're still not ready to end this fight for those in the future who are faced with the struggle of private funding to obtain in Avastin to prolong their life here in Ontario.
As always, I thank you for your continued support
Sincerely,
Ed
Friday, November 9, 2012
Nov. 8/12
Well what the whirlwind the past few weeks have been. I guess I can start by letting you know that the Etoposide chemotherapy was not working therefore we stopped and after one round. I I knew the success rate was not very high with this drug but figured I may as well try it at least until we can get the Avastin going. That's the
This past Saturday November 3/2012 a group of 20 plus volunteers put together a fundraising event for me in order to raise funds to start the Avastin. Just at the event alone, over $23,000 was raised which totally floored me. That amount does not include the bank trust account that has been setup also. The night was a huge success and I think everyone went home happy. The next morning, Faith and I received yet another surprise. Kelli M., Winner of the two WestJet tickets to anywhere they fly, ever so kindly donated the tickets back to my daughter and I. We were both overwhelmed at her generosity and kindness.
So beginning Tuesday November 13 2012 I will start the Avastin treatments. This involves going to a private clinic in London to receive the infusion every two weeks. Since it is not funded by the government it cannot be done at the London regional cancer clinic or any other government facility in Ontario. We're still putting pressure on the provincial government to follow suit with British Columbia, Manitoba and Newfoundland to fund this drug as they do in those provinces for those suffering from brain cancer. Hopefully they will see how serious we are about this issue because we do not intend to back down. My hope is that one day soon no one else will have to struggle financially in the province of Ontario because of a life prolonging drug that has been dangled like a carrot in front of their face.
Physically, my left side has become much weaker to the point where it is pretty much useless to me in daily life. My oncologist said that some of it may return but no guarantees. This is due to the tumour pushing on the brain in preventing the signals from traveling from the brain to my left arm and leg. To look at me, my left side has the same characteristics as someone who has suffered a stroke. I am ever so slowly getting used to this but is obviously not a walk in the park. A friend of mine suggested the program available on windows seven utilizing speech to text technology where in essence you talk into a microphone and it converts your words into text on most computer programs. This definitely cuts down on my frustration level while trying to do things such as writing this blog. It really sucks watching your body deteriorate and there's not a damn thing you can do about it.
Hopefully Faith and I will be able to get away in January after I get a few treatments under my belt and insure that the side effects are minimal. Faith said that she would like to travel to Hawaii for our holiday so that is what I'm leaning toward. Obviously my health will dictate where we go though. It will definitely be somewhere warm.
In closing, I would just like to thank everyone involved in the fundraising activity, from my team of 20 plus volunteers down to the wonderful staff at the Saint Thomas Senior Centre for allowing us to use their venue and everyone in between. The personal and corporate donations, both in gifts and financial donations were out of this world. I would be blogging for hours if I were to list every person that deserved a personal thank you from me for allowing me the opportunity to spend some more quality time with my family and friends. I truly never thought my circle of friends was as large as it has turned it to be. I am humbled and honoured at the same time.
I will post again after I have a couple of treatments under my belt to let you know how things are going. I'm scheduled for an MRI in December. Hopefully it's an early Christmas present of Tumour stabilization or shrinkage!!!!
Again I thank you all from the bottom of my heart for whatever part you may have played in making this celebration of Ed such a huge success.
Sincerely,
Ed
This past Saturday November 3/2012 a group of 20 plus volunteers put together a fundraising event for me in order to raise funds to start the Avastin. Just at the event alone, over $23,000 was raised which totally floored me. That amount does not include the bank trust account that has been setup also. The night was a huge success and I think everyone went home happy. The next morning, Faith and I received yet another surprise. Kelli M., Winner of the two WestJet tickets to anywhere they fly, ever so kindly donated the tickets back to my daughter and I. We were both overwhelmed at her generosity and kindness.
So beginning Tuesday November 13 2012 I will start the Avastin treatments. This involves going to a private clinic in London to receive the infusion every two weeks. Since it is not funded by the government it cannot be done at the London regional cancer clinic or any other government facility in Ontario. We're still putting pressure on the provincial government to follow suit with British Columbia, Manitoba and Newfoundland to fund this drug as they do in those provinces for those suffering from brain cancer. Hopefully they will see how serious we are about this issue because we do not intend to back down. My hope is that one day soon no one else will have to struggle financially in the province of Ontario because of a life prolonging drug that has been dangled like a carrot in front of their face.
Physically, my left side has become much weaker to the point where it is pretty much useless to me in daily life. My oncologist said that some of it may return but no guarantees. This is due to the tumour pushing on the brain in preventing the signals from traveling from the brain to my left arm and leg. To look at me, my left side has the same characteristics as someone who has suffered a stroke. I am ever so slowly getting used to this but is obviously not a walk in the park. A friend of mine suggested the program available on windows seven utilizing speech to text technology where in essence you talk into a microphone and it converts your words into text on most computer programs. This definitely cuts down on my frustration level while trying to do things such as writing this blog. It really sucks watching your body deteriorate and there's not a damn thing you can do about it.
Hopefully Faith and I will be able to get away in January after I get a few treatments under my belt and insure that the side effects are minimal. Faith said that she would like to travel to Hawaii for our holiday so that is what I'm leaning toward. Obviously my health will dictate where we go though. It will definitely be somewhere warm.
In closing, I would just like to thank everyone involved in the fundraising activity, from my team of 20 plus volunteers down to the wonderful staff at the Saint Thomas Senior Centre for allowing us to use their venue and everyone in between. The personal and corporate donations, both in gifts and financial donations were out of this world. I would be blogging for hours if I were to list every person that deserved a personal thank you from me for allowing me the opportunity to spend some more quality time with my family and friends. I truly never thought my circle of friends was as large as it has turned it to be. I am humbled and honoured at the same time.
I will post again after I have a couple of treatments under my belt to let you know how things are going. I'm scheduled for an MRI in December. Hopefully it's an early Christmas present of Tumour stabilization or shrinkage!!!!
Again I thank you all from the bottom of my heart for whatever part you may have played in making this celebration of Ed such a huge success.
Sincerely,
Ed
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