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

Ed

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.

Sincerely,

Ed McDade

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.

Sincerely

Ed 

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

Ed

DECEMBER 12, 2012 THE HEADACHE SAGA

 Now that I've absorbed about as much of the information that I've received over the past couple of days I feel I can share with you all now. On Sunday November 9th, I spent about 6 hours in the emergency department of our local hospital due to my headaches getting intolerable. I have a quite high tolerance of pain but this was getting to be too much. Long story short, after blood samples, culture swabs and a cat scan, it was determined that I undoubtedly have an infection in the open holes on my head. These are the two dime sized holes that have never healed because of the constant influx of chemotherapy and surgeries I've been through over the past few years.  Because of my compromised immune system, I am always at high risk of infection and sickness. So was this the cause of my headaches????? 

Well, at this point they don't know because unfortunately when they did the cat scan on Sunday and sent it to London for analysis, it was returned shortly thereafter saying that my deepest tumor has grown since the last MRI on September 28, 2012. The previous dimensions were 4.6 x 1.9 cm and as of Sunday the dimensions were 5.7 x 2.4cm. There was also increased edema/swelling around the Tumour mass.  This would explain the increased weakness and lack of mobility in my left arm and leg lately. So in a nutshell, what does all this mean.....................................?

I talked with my oncologist this morning (via his primary nurse of course) and the only advice I was given was to double my dosage of DEXAMETHASONE to help decrease the swelling around the brain. DEXAMETHASONE is the steroid that I have been taking for quite a period of time now. As you know from previous posts, the side effects for me are sleeplessness and increased appetite. And now they want me to double my dosage from 4 mg to 8 mg daily. There are also the number of long term nasty side effects that accompany this drug. I can't seem to win lately!!! At the end of it all I guess I just have to weigh the pros and cons of it and go from there. 

Unfortunately we never had a baseline MRI at the beginning of my Avastin treatments for reference. That would have helped because we would have known the size of the Tumour at the time of the first infusion and would also be able to track the progress of the Tumour and drug going forward. The question in my mind is has the Tumour grown larger than its current dimensions and is the Avastin working on stabilizing it or with any luck, shrinking it???????? I guess I won't know those results until after my scheduled MRI on December 21 with results day being Christmas Eve.

While this news really sucks, I am still hopeful the Avastin monkeys are doing their job inside my brain.  lol 

I go for my third Avastin treatment tomorrow morning. This infusion should only take 30 minutes since I have tolerated the first two with no immediate side effects while being infused. See.....  There is a bit of sunshine in every dark cloud  ;)  If if there is anything newsworthy after much treatment tomorrow, I will update this website. Not much else to say this point except.....CANCER SUX

Ed

December 8 2012

A quick update from yesterday's visit to the London regional cancer clinic....  My oncologist feels that the constant headaches I've been experiencing over the past few weeks are probably being caused by the fact that I have been off of my antibiotics to control infection in the open wounds on the top of my head.  I know it sounds trivial when I talk about this but remember these open wounds (currently 2 of them with a third on its way) are about the size of a dime and go right to my skull. You can actually see some of the hardware as well as my skull when my bandage is removed.

Needless to say with a compromised immune system already, I am at high risk for infection in any open wound as well as risking sickness, especially this time of year when there are so many viruses going around. Next Wednesday I will return to see the plastic surgeon at University Hospital in London and we will see if he thinks that it is infection also. The other two possibilities are that there is tumor growth or that this is yet another side effect of the Avastin drug that I'm currently taking.  To rule these out, I have a scheduled MRI on December 21 and I will ask the question at my next Avastin appointment this coming Tuesday December 11. My oncologist asked if I wanted the results of my MRI before or after Christmas.....  I told them the sooner the better. Historically, the usual one week waiting period between the actual MRI and getting the results is a very high stress time for me. So when given the option of getting the results earlier I jumped on it. I will get the results on Christmas Eve day now.

My head has healed up quite nicely since my fall a couple of weeks back. I no longer look like Rocky but I probably still sound like him with the hoarse voice side effect going on from the Avastin.  lol   Touch wood, the only side effects I still seem to be experiencing are increased fatigue and tiredness as well as the hoarse voice. Other than that, physically, my left side continues to weaken it seems. I'm at the point where I may as well cut my left arm off since it is absolutely useless to me now. It's a difficult adjustment trying to do everything with my right hand now when I've gone through life being left handed. Simple everyday tasks are not so easy anymore but I will adjust and overcome.  Still getting edema (swelling) in my left hand and foot, undoubtedly due to lack of use now. My sleep pattern still is not great because I'm still on the steroid for brain swelling and my oncologist does not want to change that at the moment. So I sleep for 3 to 4 hours a night but am now able to nap through the day it seems a little more. I'm thinking that is due to the Avastin.

My walking is getting a little more difficult as well. I find at the moment I'm walking on the side of my left foot a lot more because the botox injections that I normally receive every three months in my leg have wore off. Since there is no brain/muscle communication going on, my left foot is very stiff and in an awkward position. The botox injections relax the muscle groups in that area for a period of time and allow my left foot to begin a somewhat normal position to assist in walking etc. At the end of the day, I could truly use botox injections right now, but my scheduled appointment is not until January 25. They have put me on a cancellation list so I hope that I can get in to Parkwood Hospital prior to that date.

On to some more upbeat news................

Yesterday we booked a trip to Mexico in January. Faith, myself, mom and dad, my nephew Darren as well as two of my sisters are going. I'm more than ready for a week of not having to think about anything other than how much sun tan lotion should I apply today! Faith is truly excited about going and I think having her cousin there will be beneficial for her as well as me. I cross my fingers every morning when I wake up praying that my health stays stable for this trip because honestly, things could change at the drop of a hat and everyone needs to be aware of that fact.

With the help of my best friend Al Vigar and his son Mat, we were able to put together a You Tube video of my personal story over the past five years of living with cancer. If you search YOU TUBE, search under Ed McDade cancer sux  and that should take you to the video. The video is approximately 50+ minutes long so bring your popcorn and soda!  Please share it with your family and friends because the more views it gets, the more the word will be out there in regards to our provincial gov't not funding the Avastin drug at the current time for brain Tumour patients.  We are still advocating this issue with the government via emails and online petitions that can be accessed on Facebook. Search for the group Dianne Bell-re: Avastin and you should be able to access all the information from there.

The continued support I've received has been absolutely amazing. Never in my wildest dreams did I think I had so many people who truly cared. My Cami family, has gone over the top with their continued generosity on a daily basis. A big thank you goes out to all of my volunteer team who made the Celebration of Ed fund raising event such a huge success and put it all together within a three week time frame. Absolutely amazing! There are probably a million other people that I should be thanking so forgive me in advance if I have not (or a member of my volunteer team) contacted you yet. So I guess as kind of a blanket statement, I would just like to thank each and every one of you who has supported me in any and all ways. I am ever so grateful for everything you have done. I would also like to thank my family for being there for me, especially lately now that I seem to require more assistance in everyday living. You help me more than you know and I truly appreciate everything you do. Everything from helping with some of the household tasks I can't accomplish anymore to stringing my outside Christmas lights so that faith and I may enjoy them, as well as numerous other things.

OK so what else is going on in Ed's life..............  Unfortunately I still get daily nurse visits to attend to my head wounds etc. As much as I know this is a good thing, it is also a pain in the butt. Don't get me wrong, they are a good team and truly help me out, especially now that some days I even have to have them help me dress if I have to go for an appt after their visit. Yet another task that has become more difficult for me to accomplish lately and I guess I just have to suck it up and accept the help and put my pride and Scottish stubbornness aside.

Wow, I was just looking at how many people have viewed my blog since I began this journey.....  31,294 times.  The you tube video has had over 400 hits already as well. While on the topic of the video, I would also like to mention that part of the reason for it coming to life is because I was approached by two wonderful high school girls, Myranda and Brittany from Central Elgin Collegiate Institute, here in St Thomas by e-mail one day asking if they could support me in any way as part of their leadership course they were enrolled in at school. They have helped with fund raising, the video idea as well as providing information to the schools and community regarding my situation. Thank you girls!

Before I forget, I would also like to thank the media for their coverage of all that has transpired over the past while. This includes the St. Thomas Times Journal, the Weekly News, St Thomas Rogers, London Rogers ( there is a video online on their website called  Newsmakers, which we did a discussion panel type of interview with that was a aired last week), the St. Thomas Blog, the Brantford Expositor, the London Free Press, CTV News London, 94.1 MyFM radio as well as others who have unfortunately escaped my chemotherapy riddled mind at this time. Just please know that you all have my gratitude. 

Must take a break now and get ready for my nurse visit. I shall return with more drivel to bore you with.

OK nurse visit is over. In closing I would just like to share a story that was forwarded to me by a fellow cancer survivor. Story revolves around the lupus disease but could be replaced with any life threatening illness or disease people are facing such as myself. I hope you can walk away from it with a better understanding of how we live day to day with only a limited amount of spoons. You'll understand the spoon comment after you read the story.

The Spoon Theory

 

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

My thoughts, prayers and well wishes go out to all those fighting this cancer demon at the moment and especially those close to home such as Barry, Chuck and young Kendra.

Yikes, this was a pretty long winded post but thank you for reading it.

Take care and enjoy your weekend

 

Sincerely,

Ed

November 27 2012 Avastin Infusion #2

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.

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

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

Oct 24 2012

So there it went.....21 days of a 28 day cycle on Etoposide. This is the one of the older chemos that my NO (neuro-oncologist) thought I should give a whirl, just for a crap-shoot I assume, since its success rate falls in the 10-20% range. After one cycle of it and even increasing my anti-seizure meds, I'm still experiencing focal seizures. To me, that says the stuff is not working. I could be wrong and there are other possible root causes but after fighting this for almost 5 years now, I have gotten to know the signs and symptoms pretty good. That being said, I have a week to decide whether or not to start round two of this stuff, or wait until Nov 2nd and review the options with my NO and possibly start the Avastin from there (as long as my blood counts have not deteriorated too much from the Etoposide) As of today, I am leaning toward starting the Avastin sooner than later.

Along with the focal seizures, my left side is becoming much weaker. Its at the point where I can only use my right hand for typing....cannot sign my own name or print, and many other tasks I'd normally use my dominant left hand for. So yes, it is taking me forever to hammer out this blog using only one hand and correcting all my errors along the way! I may have to switch to video blogging soon. Anyone got any other ideas??

The response to the Facebook pages has been tremendous. Keep sending those letters and e-mails in to our gov't officials! They have to wake up one day....whether its during my time, or the next person who stands up to fight for some extra time with thier loved ones in Ontario. Guess our Provincial Gov't is just not as compassionate as British Columbia, Manitoba or Newfoundland!!

                                ~~insert coffee break for hand to rest~~   lol

I will never be truly able to extend how grateful I am to all of my team and supporters of putting together this fundraiser to enable me to start the Avastin program. I am truly blessed to be surrounded by such a caring group of people. This includes family, military, Cami, school and even complete strangers who have contributed in one way or another to hopefully grant me some more quality time with those who are important to me. I sit here in complete awe of each and every one of you. Thank you for your tireless efforts.

On another positive note....I am possibly qualified for up to a 20% discount (if you can call it that) on the cost of the Avastin from the manufacturer itself. I just have to submit some previous years tax forms etc and they will determine if I qualify. This would equate to possibly reducing the monthly cost of the drug from $8740 to $6992. Still a crazy amount but every dollar helps. I will keep you posted on the outcome of that....hopefully there are no hidden clauses hiding in the background!

Well my right hand is telling me it is quitting time but before I sign off, I just want each and everyone of you to know that although every day is an emotional and physical battle for me (yes, I know I'm good at putting on the tough guy face) my strength comes from all of you. Having you guys in my corner is what keeps me lacing up the gloves every day, getting out of bed.....and fighting for my life.

Love to you all

Ed

Oct 12 2012

So what a week or so it has been. A ton of good things happening but it is also taking a small toll on me I think. 2 focal seizures in the past 2 days....all just stress-related I'm hoping. I can't thank Dianne enough for all the tireless work she has put into this effort thus far. I think I need to be holed up in a hotel somewhere for a couple of days to get my affairs in order and re-group somewhat.

I don't think we will get much, if any response from Deb Matthews however, as I was informed yesterday by her assistant that this matter will go through the C.E.D. (Committee to Evaluate Drugs) under the direction of a Diane MacArthur sp?  Matthews position is prohibited from getting involved in any specific cases to apparently keep politics and emotionalism out of the results. Makes sense I guess. The bottleneck right now is my Oncologist, with his preparation of a report that he promised me a week ago today! And yes, I've called daily to everyone but God at the London Regional Cancer Clinic inquiring! I'm sure he is a busy man but hey, I'm a dying man dammit.

We are planning a sort of Celebration party in November hopefully so that I may see old and new friends alike. Will pass along details as they become available. Its too much for me to have daily visitors at the moment with all that is going on, so this way I can make a terrific evening of it and invite you all to come celebrate my life with me. It may sound morbid to some but this is what I want to have happen.....people to see and visit with me before things turn south.

I'm on Day 10 of 21 of the Etoposide Chemo right now. No noticeable side effects other than some hand and lip numbness, which was listed as possible side effects anyway. No sense telling the Cancer clinic though....can't even get a damned form filled out there. Sorry, but slowly losing faith in that facility. I will remain on Etoposide for 2 rounds, perform an MRI to see what, if any effects its had on the growing tumour, and then 99.9% chance of switching to the Avastin after that. Fingers crossed after that, being as it is my last possible hope with Western Medicine.

Sleep and I are still enemies it seems...partially my own fault. I did get a new sleeping pill to try but am almost scared to take it because it already seems there are not enough hours in the day to accomplish what I need to and the wee hours of the morning seem to be when I get Ed time, to work on what is important to me....such as writing this blog to keep everyone up to date without having to repeat it over and over. It sucks when your conversations with people only revolve around the Big C. Count your blessings every day people!! God never promised you tomorrow.

EJM68

Oct. 10/12

Happy Thanksgiving to all !

Firstly, if anyone who reads this Blog did not get my latest update via e-mail or Facebook message, please send me an e-mail at  ed_mcdade@hotmail.com and I will forward the information to you.

So I have started on a new chemo as of Oct. 3/12. ETOPOSIDE is another oral chemo that I will take each day for 21 days then get one week reprieve from and then start the process again. We are hoping to be able to at least use this for 2 rounds and then do another MRI to see what effect it has had on the tumour. If there are no positive results showing on the MRI, I will then (99.9% sure) proceed to the final conventional treatment available....AVASTIN.

In discussion with the drug company that manufactures Avastin, Roche, it looks like it will cost me approx. $8700.00 per month minus any possible assistance they may provide ( up to 20%) if I qualify. I am still waiting to hear back on what "qualifies"you for assistance.

With the assistance of some friends, we have been lobbying to the Provincial levels of gov't to try to get this drug covered for Brain Tumour patients. It just does not seem fair that they make this drug so far out of reach for us common folk. If not even for my case, I hope the stirring of the pot helps others in the future faced with the same issue.

I truly apologize if I have not been able to return your phone calls, e-mails etc as of yet. I am working on it though. All your messages mean the world to me :) I have read each and every one of them and saved them.

Please truly be THANKFUL this weekend for all that you have been blessed with in your lives. God never promised us tomorrow.

Until my next post........take care and know that you are all in my thoughts.

Tomorrow I shall wake to fight again!

PS: I love you Faith!  :)

Sept 25 2012

Well after a lengthy 3-way call with General Motors and our Health Care insurance provider this morning, they flat out told me NO, they do not cover the Avastin drug for use in brain cancer. I feel as if the doors are all beginning to close around me now. Seems to be no escape from the enevitable it seems.

.......................................... . . .

Sept 24 2012

So as my body was already telling me, my Oncologist confirmed today that newest chemotherapy they put me on is not working. My latest MRI taken last Tuesday showed growth in the tumour. With that being said, he has taken me off the chemo and I start planning my next course of action.

Exactly.....what is my next plan!!??  Well there is a drug out there that MAY work for a period of around 6 months to a year called Avastin. Downside to it is the fact that is only covered in British Columbia for use on Brain Cancer folks and not the rest of Canada. For those of us in good ole Ontario, that means it will cost between $8000 and $15000 per month out of pocket if your private insurance company does not cover it either. My Oncologist forewarned me that the majority will NOT cover it because testing shows that the lack of longevity it provides does not make financial sense.
More downsides are that since this type of chemo attacks the blood vessels of the tumour, my Oncologist has witnessed patients dying from complications such as developing a bleed on the brain due to burst blood vessels. Not to mention heart failure as well as a number of other serious side effects.

So over the next few days I obviously have some serious thinking to do as well as investigating the pros and cons of this drug. Oh, and then there is the issue of whether or not my private insurance will even cover it. ( I seriously have my doubts ) For the insurance company, it will all be about making a business decision based on that whole "longevity "issue. After all, they have our gov't standing behind them on this one.

Anyways, things don't seem too rosy right now so I will close this off and maybe continue it another day when I have thought things through a bit more and hopefully have some answers.

Funny thing is...........For the past couple of years, I've told myself I will probably only see the 5 year mark. Hmmmm...this coming January IS 5 years.

Til next time

Ed

Sept 19 2012

Good EARLY morning:

Just a quick blog to let you know that I go for my first MRI today since being diagnosed with this latest tumour. Being as this new chemotherapy is kicking the heck out of me, I can only hope that it is doing the same to the tumour. I will not get the MRI results until a week from now so stay tuned I guess.

Sleep is still not my friend. I have tried almost every concoction out there with no luck as of yet. I guess the old saying is true.....you can sleep when you're dead. My blood counts are plummetting this week....platelet levels and white cell levels being the most affected.

I will update more next week after my Cancer Clinic appt in regards to results.

Take care

Ed

Ding Ding Ding....Round Two Chemo Aug. 13/12

Yesterday I was finally cleared to start another round of Chemo. My blood levels etc are not optimal but are good enough according the professionals.......so away we go!! I obviously have mixed emotions about starting this new chemo again since it knocked me on my butt last time and landed me in hospital for 3 days.

Whats the alternative though I guess right? If it keeps me on the right side of the dirt, then I just have to suck it up like the rest of the Cancer World and trudge onward. I apologize if I am repeating myself in advance, but one small light in this tunnel is that they also doubled my dosage of Dexamethasone to decrease the seizures and it seems to be working!! The other edge of that sword is that it doubles the amount of sleep I am deprived of as well as increases my appetite tenfold I think.
Along with that, I feel my tolerance level of normal everyday things has me on edge lately. The joys of drugs.  UGH

Busy week ahead of me with appointments, kids soccer 3 times and organizing for this weekend's fundraiser. Thankfully once Sunday is over, so is soccer until Fall and the fundraiser will be a successful memory! At that point, it will be high time to concentrate on ME again and work on keeping as healthy and sane as possible.  lol 

As much as I sound like a broken record..........thank you to all for the outpouring of support you give me at each and every hurtle. Its that stuff that energizes me and keeps me pushing the envelope even further to keep the Cancer demon away from my doorstep.

I need to find a reasonably priced R.M.T. soon....my left leg's muscles are deteriorating from the numbness issues etc. I feel the atrophy setting in and am losing any flexibility. Any suggestions? Local only please.

Love to you all XX

Ed

August 9/12

Oh boy.....where to begin this one?!

Since my last post on July 24/12, things certainly took a turn for the worse regarding the effect the new chemo (Lomustine) has had on my body. I ended up being admitted for 3 LONG days and nights in our local hospital on the advice of the Cancer Clinic in London. My platelet and white blood cell levels continued to plummet, a temperature of 38.5 degrees and the ever-present infection lurking in my head, I guess medical intervention was the only way to fix it this time. Couldn't get out of this one with only my stubborn attitude ....dammit!

So after 3 days of being hooked to I.V. bags for all of the above issues, I was released again to wreak havoc on society. Needless to say, I almost directly headed to my only place of solice these days.....my trailer. When I am there, I find peace within myself and find that I can regain some strength both physically and emotionally to face the realities of life that are scratching at my door, begging to be let in out of the cold on a blustery winter's night.

Realities such as I am fighting this fight in essence, alone now. My rock had reached her limit in dealing with the "Life with Cancer "I guess and needed to work on her own life. The timing unfortunately could not have been worse. I felt I was abandoned during my darkest moment of my 4+ year fight with Cancer. Nevertheless, we all have to do what is right for us and look out for number one, so I wish her the best of luck going forward with her own life.

At the time of writing, the Doctor still does not feel I am ready for another round of chemo. I was supposed to begin this past Tuesday but he wants to wait another week to see if all my levels improve enough to begin the body-beating again. The fatigue level I experience with this chemotherapy is unlike anything I have ever experienced in my life. I consider myself a fairly tough cookie but this drug knocked me down in every way imaginable. People have commented on how good I still look, which normally would be a nice compliment to hear, but without holding anything back, I have to tell you that those words are the last words I want to hear right now. Why you ask? I guess its because I do not feel good at this point, inside or out! I sit here and watch my body physically deteriorate week by week, knowing there is not a damn thing I can do about it. And for someone who has been in control of his own destiny the majority of his adult life, this is a very difficult and sometimes bitter pill to swallow.

Don't take that wrong though, I truly do enjoy hearing from everyone. This path would have ended a long time ago were it not for all the well wishes, encouraging words and kind deeds that you have all given me throughout the fight. Right now, I just need visits and phone calls etc to be brief. My body is screaming for attention and I think its time I paid attention to it rather than worrying about the rest of the world.

My family, both immediate and extended have been a blessing lately. They have jumped in feet first to help me where there is now a void. Dealing with me, along with my younger sister's issues, is more than any parent, especially in their retirement years, should have to worry about. I hope, Mom and Dad, that if you are reading this, that you will both take the time for yourselves too, I need you here healthy and happy, along side of me ok ! 

Have I been irritable and grumpy lately.....hell yes. Sadly I even see it in myself as I'm sure those who are close to me have noticed also. I believe that this too shall pass, just a bump in the road due to the events that have gone on the past couple of months in my life. I apologize in advance, none of my unhappiness is caused by any of you  :)  Being so independent all these years, its just hard to come to the realization that I DO need help once in a while from others.....again, sometimes a hard and bitter pill to swallow for me.

The focal seizures continue to plague my left side, but the severity and frequency seem to have lessened since they increased the dosage of Dexamethasone about a week ago (Dex. is used to reduce swelling on the brain). Of course the downside to that is the primary side effect....NO SLEEP!!  I am lucky to get 3-5 hours of sleep a night, and that is with the aid of a sleeping pill. Oh well, like I've always said......we can sleep when we're dead!

So going forward, we shall hopefully attempt chemo again next week. My next MRI is still planned for September and by that time, we should know if the chemo is having any effect on reducing the size of this latest tumour. FINGERS CROSSED

On a final note, my angel of a daughter Faith, has been a trooper through all of my ups and downs. She has taken my illness by the horns and helps me immensely....probably unbeknownst to her all the while. I love that kid of mine  :)

Wishing you all the very best in life...........

Regards,

Ed

Rest in Peace Paul Davies who very recently lost his battle to Brain Cancer. You are gone now but the memories beginning way back in childhood in the old neighbourhood will forever be etched in my mind and heart.

July 24/12

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

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                            

June 2/2012

Its been a while since my last post so I will try to update you all with as much as I remember from the past few months.

After 341 consecutive days of oral chemotherapy, I was able to stop taking it on March 14th because the Temodal had been doing its job and had reduced the size of all 3 tumours enough to allow me to gain some strength back with my immune system and prepare for my up-coming surgery. While this is of course good news, being off the chemo also means there is nothing fighting the tumours if they've decided to grow back. I've been dealing with constant headaches and fatigue lately put I guess I can't put the cart before the horse and assume that these symptoms are tumour related. I have a scheduled MRI this Monday, June 4th and will hopefully know the results prior to my surgery on June 11.

The June surgery is to remove infected bone and flesh from the open wound I have had on my head since my last craniotomy almost 4 years ago. Over the years, the hole has gradually became bigger (about the size of a quarter now) and there are previous surgery pins and dead skull bone showing. Even though I receive Home Care to clean the area, as well as clean it myself and keep it covered 24/7, I have been on antibiotics for months to at least control the open site from infections etc.

The surgery will be a 2 step procedure....first my neurosurgeon will go in and remove all of the dead/infected area (which we do not know the extent of until he opens me up). After that, the Plastic Surgeon will be taking a skin graft from my inner thigh to use for wound closure since the existing skin on my head is not suitable since I have had so much radiation and disturbances in that area. From what I was told, he will make an incision on the back of my head where my once upon a time hairline was, push that skin forward to cover the hole, and then use the grafted skin to make up the difference where he made the incision.

I was told this should only be an over night hospital stay so barring any complications, I should be home the next day. The Plastics guy has forewarned me that this may be unsuccessful if the graft isn't accepted by my body and if so, I will have to have another, more complicated surgery where they would take a deeper graft from my leg, along with its own blood supply (vein) and slap that on my head. Just because of the location of the graft and incision, I feel some sleepless nights ahead after surgery.

After continually beating my expected prognosis, and having to watch friends and family members of friends lose he fight to cancer, it is a small amount of discomfort that I will take in stride. My thoughts and prayers go out to all of my friends fighting the fight, as well as to those who have recently lost loved ones.

PS:  Cancer Sux!

Ed

March 12 2012

Had my MRI results this morning..........GREAT news! The newest and smallest tumour of the 3 that were present is no longer visible on the scan. The other two have also shrunk quite a bit too. That being said, my Oncologist has deemed it ok to take me off chemotherapy for the time being...at least until my next MRI in three months. So after 340 days of being on chemo every day, my body finally gets to take a rest!!

Along with that, we will now arrange a surgery with the Plastic Surgeon as well as the Neuro Surgeon to finally, after 3 years, hopefully close up the 10cm hole in my head. The process will involve removing dead and/or infected bone, replacing with undoubtedly a synthetic material and then the Plastic Surgeon will either attempt to close the hole using the existing skin or possibly a skin graph. Not sure of when this will happen but the sooner the better since I am prone to infection all the time with this hole.

A great weight lifted off my shoulders this morning. Hopefully I can regain some energy with the chemo out of my body for a while.

Realistically, I will never be cured of this type of cancer due to its nature but I have bought myself more time with the chemo treatments to be able to spend quality time with those whom are close to me.

Thanks to you all for the amazing support you have given me over the past few years. It has made this bumpy road much more tolerable. And when the cancer does decide to grow again, I will be there with 2 fists up, ready to take it on!!

Sincerely,

Ed

Jan. 31 2012

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