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Sunday, January 20, 2013

January 20 2013

Hi folks.... Well we made it back from Mexico all in one piece.  Unfortunately my health continued to fail while we were there, but I believe the rest of the family had a great time.  Most importantly the kids enjoyed themselves and created some lasting memories.  I could not have done this without my family's support as well as my brother in law, Morris.  Thanks guys you did an awesome job !!

Now that I am home I will be requiring PSW support on a daily basis in the home during the daytime hours and the family will help out during the evenings for now.  We will trial this for a couple of weeks and see how things go and tweak from there.  I need assistance dressing, bathing, shaving, dressing, food preparation.... so yah pretty much everything.  My left side is totally gone now and I am very weak.  My sleeping pattern still sucks because of the steroid that I take at night now.  Unfortunately/fortunately I do sleep more throughout the day.

Tomorrow I have a Cancer Clinic follow up appointment undoubtedly to determine whether or not I continue on the current chemotherapy drug.  At time of writing my MRI is scheduled for March 18 2013.  I am going to inquire about different options for pain management as well.  Would like to find something longer lasting so it may allow me to sleep through the night without waking to take meds.

Thank you everyone for your Birthday wishes.... I will update more later this week when I am more rested.

Thanks, Ed

Tuesday, January 8, 2013

January 8, 2013

Good morning all:

I wish I had a ton of good news to tell you all regarding my health and overall well being as of late but unfortunately it just seems that things are going downhill. I think the Tumour is still growing quite aggressively even with the chemo therapy that I'm on now. To be honest I didn't think this would work anyway but I had to give it a try. My walking is now reduced to a very slow shuffle in only for a few steps and my left arm is still totally useless. My oncologist put me up to 12 mg of dex now from the previous 8 mg to hopefully help reduce brain swelling. I have had some killer headache lately but they seem to be under control now for the most part as long as I stay on top of them with my pain medication. There were days or I could not move when I woke up for over an hour due to the excruciating pain.

We leave for Mexico this Thursday morning at 6:00 AM out of Toronto. I'm hoping a week away will do me some good. Just to be able to relax and hopefully not thinking about cancer the whole time I am there. My brain needs a rest.  Can't think of too much more to update you on other than the fact that I will probably remember something as soon as I post this. lol 

Take care


Tuesday, January 1, 2013

January 1 2013

Good morning and welcome to 2013. I would like to wish everyone peace, health, love and happiness in this coming new year. I ended my 2012 with a bang of sorts last night. Was just on our way out to visit my best friend and his lovely wife in Tillsonburg when my leg decided to give away on the last front step leaving the house. Needless to say I scraped my head up pretty good as well as my hand and sadly we did not venture any further. Had to call my Sister Shirley and her husband to get me off the ground. Oh how I love this life of mine. I'm a little sore this morning but I've had worse I guess.

Probably my own fault because I have not posted much in a while but I just wanted to clarify a couple of things regarding the Avastin. After completing three rounds of the Avastin it was shown on my Tumour that it was increasing in size with the Avastin having little to no affect on it. Therefore in the interest of my own best health, it was decided to stop treatment immediately because as we all know, these treatments are very hard on your body as well and why put your body through more needless torture if it's not required. Over the next while I will be forwarding all my documentation including MRIs and reports to some hospitals around the country to see if they will review my case for a more available options other than what the London regional cancer clinic will provide at this point. The chemotherapy I'm currently on only has a success rate of 20 to 30% with brain cancer. So we will try this for 30 days and review at that point. Personally I do not feel it is working judging by the massive headaches I still encounter on a daily basis.

My left side is deteriorating quite badly lately to the point where my walk consists of a shuffle and my left arm is still totally useless. It kills me having to accept help from family and friends now but I know it needs to be done. I cannot thank my family and friends enough for what you have done lately to help me over this hurdle. And to my daughter Faith, you are a rock for me. Your actions last night helping me out proved it yet again that I've helped to raise an amazing daughter. I love you to the Moon.

Please don't be offended by my extremely slow replies to everyone lately.  Trust me, I read each and every post and comment on Facebook and emails. You all are part of my inspiration to keep his fight going. My spoons have just been in short supply lately.

In closing, please say a couple of prayers to what ever you believe in that my health at least remains the same for our upcoming family trip. Much love to you all and again, thank you for all you have done to support me through this journey. I'm not done fighting.


Thursday, December 27, 2012

December 27, 2012

And now I remember why I do not like drugs! 

Over the past two days I have been totally out of it due to the fact that I had not been monitoring my new painkiller medication properly. Ends up that I was taking way too many because I could not remember whether I'd taken them are not. So after taking too many two nights ago I ended up so weak and out of it that I could not get off the floor in the computer room. My body was filled with total weakness as well as too many drugs I'm sure. So from 3:00 AM until around 8:00 AM I just laid on the floor sleeping until someone arrived. Yes I probably should have utilized my life alert button but I didn't think I was in any harm by laying there anyway.

I'm feeling somewhat better today, well enough to be on my own right now but still feel weakness. As long as I take it slow I will be OK. I've never had such a horrible feeling in my entire life...  Laying there feeling so helpless with not even enough energy to get myself off the floor. My family was obviously quite worried so Karen spent the night here last night and Shirley and Morris have been popping in and out.

So going forward I will be putting my pain medication into a separate pill bottle and monitor usage from there. Never do I want to go through that again!

So yes that is why I've been unavailable for the past couple of days and I apologize for not replying to anybody.  I'm using a mobility scooter to get around the house now. It is much easier on my strength and trying to walk back and forth all the time. Things seem to be getting slowly more and more difficult but I will continue to plug away as best I can with what I can. Thank goodness for this voice recognition program or I feel I would be out of touch with the whole world since my left side is totally useless now. If if you want to contact me, the best methods are either e-mail or MSN messenger or Facebook. I cannot do long text messages anymore. (and I don't have a voice recognition program set up for text messaging yet)

Thank you


Monday, December 24, 2012

December 24 2012 MRI follow-up appointment

Received the results today from Friday's MRI. The results were not good. The Tumour is still growing and the Avastin unfortunately in my case, is not doing its job. Sadly it seems to be having the opposite effect. Worsening my left side which would continue if I remained taking it. Therefore any future infusions have been canceled and we're going to attempt at yet another drug this one in pill form again for 30 days. This drug is normally use in breast cancer patients but a much lower dosage.  Apparently there have been some success stories using this drug at a higher dosage for brain tumors. We have no clue if this will have any effect but again, I will exhaust every avenue available.  The drug is called Tamoxifen Citrate.

I have a month now to digest this information and determine my next step. The trust fund money will  go toward my next option...  Whether that be here in Canada, the U.S. of A or elsewhere. My oncologist said that if the tumor continues to grow at this rate I can expect to see some major regression in a couple of months. When asked about that he said that I would probably require a lot more care in the home, if I can even still live alone that is.

So all in all, it hasn't been a very fun day but I'm still here today and that's what matters as it allows me to plan for tomorrow to fight another day. Will still try to remain in the Christmas spirit for the sake of my daughter and family. My poor head is pounding right now, undoubtedly from the never ending curve ball that keeps coming my way.

I just wanted to let you all know the gist of what transpired today and I think I need a little rest right now. If I think of anything else I forgot to tell you, I will update at point. Right now I need to recharge my batteries and prepare to face another day.

If I don't get back to the blog before tomorrow, please know that I wish you all very merry Christmas and a healthy, happy and joyous 2013.


Ed McDade

Saturday, December 22, 2012

December 22 2012

Well what a horrible few past days these have been. Without looking back on previous posts to remember what I've told you or not....  Here it is. Over the past while my headaches have gotten increasingly more severe to the point where I cannot even consider moving from point A to point B until the Tylenol kicked in when I wake up in the morning. I would have to sit still for almost an hour before I could do anything. Today it's got to the point where I resigned to letting my sister call my family Dr. At home to see what he could do to save me from going to emerg. So as of now I'm on Hydromorephone which finally is giving me some relief from the 24/7 pain. I have always refused a stronger painkiller in the past but it got to the point where enough was enough.

We had our family Christmas today but unfortunately I was bedridden for most of it. I think the rest of the family had a good time though and they're all understanding of my situation. My relatives came down from Burlington which was nice and I think this was the first time we have had so many of us together all at once.

As for the hand and foot syndrome, that seems to be getting a little better also. There was a point where I could not even walk for more than a few steps without excruciating pain on the soles of my feet. Yes I know...  I'm beginning to whine. Still experiencing total body weakness. It's difficult to even get up out of the chair. Not sure of the root cause of this but I'm sure Monday's MRI results should tell me a lot of answers as to what is going on in my noodle.

Had to restart my antibiotics because my nurse noticed more signs of infection over the past while. Could that have been the cause of the headaches? Who knows....  All unanswered questions until Monday I guess. I find myself getting very agitated easily lately. Undoubtedly due to the fact they doubled my steroid. Please do not take it personally at all. Just another lovely side effect of the drugs that I have to deal with.  Thank you all for understanding. I should be able to squeeze in one more post before Christmas so I will save my well wishes until then.



Saturday, December 15, 2012

December 15 2012

Hello everyone.... 

Just a quick update since my last post. I feel the headache issue is two fold. The infection seems to be clearing up with the help of two antibiotics but I'm still experiencing daily headaches...  But not as extreme. I personally feel this may be Tumour related due to the growth and swelling. But for now I will just have to play the waiting game until December 24 when I get the results from the MRI on December 21.

Started the double dosage of DEXAMETHASONE a few days ago and already my sleep pattern has got even worse. I think I have had 2 hours sleep tonight with not much reprieve in sight since I have Faith this weekend. No big deal though....  I will sleep through the week....  Maybe. lol

Since my left side has become pretty much useless now, I have been going to physiotherapy just to have them manipulate my muscles to prevent as much atrophy as possible. This was going great until I receive a letter in the mail the other day stipulating that since I have a chronic condition, they feel that an adequate time in visits have been allowed and that an in home exercise program to maintain function and range of motion should be adequate enough. This mail was sent by my private insurance carrier. I wonder if there is anything that they do cover in my plan? ??  How nice of them!  I guess I will look for something else affordable because I do not want all my muscle groups on the left side to seize up any further. I've already noticed decreased muscle mass and lost over 75% mobility in my left side.

Myself and some of my family members are leaving on January 10 for a one week vacation in Mexico. I think we all truly need a break from cancer. It not only affects me, but those close to me also. Faith is over the Moon about going to Mexico and I can't wait to see the excitement in her face when we actually get there. She is my reason for being.....  And I want to give her a little boost in January to allow her to continue to fight the fight right alongside her daddy.

Thanks for listening and enjoy your weekend