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Tuesday, June 28, 2011

June 28/11

Well not the best news after 85 days of chemotherapy. The larger of the two tumours continues to grow so the chemo has not worked on it. The smaller tumour has shrunk a bit from the chemo. The explanation I was given was that the chemo was able to attack the smaller tumour because it is closer to the surface of the brain. The larger tumour is quite deep in the brain, away from the original site, thus the chemo not being able to infiltrate deep enough to do any work on it.

My left arm and facial numbness issue is actually a seizure in disguise. These are presenting due to the fact that the tumour is growing and obviously displacing the brain territory.

Sooooooooo, with all that being said, I am going on another 28 day all expense paid chemo trip again. I have been given an additional anti-seizure med to work with my current med and will head back to the Cancer Clinic in a month for another appt. Looks like it will be 2 months before my next MRI unless any complications arise before that.

I may sound a bit nonchalant about all of this lately, but I think I am just growing numb to the events that happen over the course of this journey. As I have in the past, I will keep the boxing gloves on for "one more round" and re-charge my batteries whenever I can.

Creeping Charlie has not won yet ;)

Thank you for all your positive thoughts and wishes....they truly do mean the world to me.I read each and every post, e-mail, text etc before I hit the clinic and it gives me the focus and strength to carry on the fight. (ok, mabe a little white lie there.....my little girl is my #1 inspiration) but you all are a very close second ;)

Saturday, June 18, 2011

June 18/2011

Well its been a few weeks since my last update so I guess its time.......

First and foremost, my heart goes out to my Aunt Carol and family (mom's sister) on the tragic loss of her son recently. So very sad, he was only 41 with a partner and 2 kids. Just another slap in the face kind of reminder, that we can all go at any time. Live your life to the fullest and live with no regrets.

Well we have finally secured a place for Angela to call "home". She will be moving into an apartment complex in August. It is a ground floor unit and she will be receiving in-home care via Cheshire House. This is a HUGE weight lifted from my shoulders. Still a ton of work to be done from clearing out her old apartment, to storing her belongings temporarily and purchasing all the mobility aids that she will require for around and outside the home. Supposedly there is financial assistance out there to help with this transition for her....but its like getting blood from a stone to get any gov't organization to commit. Angela continues to undergo dialysis treatment 3 times a week and is slowly regaining some strength physically.

If any of my old Cami friends from the St.Thomas area are able to get any wire harness boxes in the next while, myself or someone from my family would gladly pick them up from you. (hint hint) :) We'll need to start packing up her life soon I'd imagine.

Ok, on to me........I'm currently on DAY 74 of chemo. No break in between, no trip to never-neverland, they just keep feeding it to me daily. I will be done the third round on June 27th. Over the past few weeks, my energy level has dropped significantly. I have a hard time making it through the day at times but just kick myself in the butt and trudge onward. I'm at the point of where I'll have my own little conversation with my chemo pill asking it "are you even working?? Have I been taking you and your toxic effects for the last 70 plus days for nothing??" Some days I'll even look at the pill and get within inches of putting it back in the pill bottle and saying screw it. But, to date, I've complied with what conventional medicine says I should do. If I get poor MRI results this time....it might be a different story.

Next MRI is Monday June 20th at 3:45pm, then wait another 8 days for my results appt on the 28th at 2pm.

I'd be lying if I told you everything is rosy right now. As I said, my energy level has significantly decreased, I'm having bladder issues lately, and my vision seems to blur at times. I find I am stumbling for words during conversations and feel like I'm living in a haze some days. Whether the root cause of all this is due to the amount of chemo that has been ingested into my body over the last 3 months or the tumours are taking over.....I don't know. I guess by the end of the month, the ugly answers shall rear their heads.

I appreciate everyone's kindness toward me during all this. All your tokens of thoughtfulness are truly appreciated and remembered. One thing I really have to bite my tongue on (as I'm sure many people fighting cancer or any other terminal disease do) is when people approach me and say "hey, you look good". lol I honestly know that people say it with the best of intentions and all that but there are just some days that I'd like to come back with a good retort. I don't though...and never will, because I know these people are just kind, caring people who do are genuine with their intentions. As an old fellow supervisor at Cami would say( Lester)...its still Ed, the metrosexual. lol I still do my best to look as good as I can with what I've got. For me, looking good, makes me feel somewhat better, almost as if my life was normal. Dare ya to step INSIDE of me though....its a nasty place :(

Happy Father's Day to my Dad...and to all the other Dads out there who do actually take interest in their child's life. I know in my heart, I'm doing the best I can with Faith....no matter what shit-slinging others may toss at me :)

Thanks for listening :)

Next update will undoubtedly be after the 28th appointment.

Peace


PS: Before you raise an eyebrow about the metrosexual comment....Google it heh heh

Tuesday, June 7, 2011

June 7 2011

I ran across this on Facebook the other day.....definitely words to live by for all, not just the dying!!

REGRETS OF THE DYING



For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.

People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.



When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:



1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.



This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.



It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.





2. I wish I didn't work so hard.



This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.



By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.





3. I wish I'd had the courage to express my feelings.



Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.



We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.





4. I wish I had stayed in touch with my friends.



Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.



It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.





5. I wish that I had let myself be happier.



This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.



When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.





Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.



PS: Happy Birthday to my sister Karen and Happy "25"th Wedding Anniversary to my sister Shirley and her hubby Morris. Now thats true love!!

Wednesday, June 1, 2011

June 1/2011

Had another visit to the Cancer Clinic and it went as I expected unfortunately. They have thrown another 28 days of chemotherapy at me and its still just the "wait and see" game until June 20th when I finally get an MRI to see if the 84 days in a row of chemo has done any good or not. My "results" appt is on June 28th....whats another 8 days of waiting !!!

I feel the cumulative toll of the chemo starting to wear on me. I feel weaker and easily tire lately. I have gained about 10 pounds due to the effects of the steroids and overall, feel like I am in a haze. The end of this chemo session cannot come soon enough....its beating me up.


In the world of Angela, we are still looking for suitable housing for her with very little success. The hospital is ready to release her but there has not been any viable options for housing. Angela should be able to live independently as long as she has Home Care come in 2-3 times a day to assist with meals, medications and supervised bathing etc. Ang will require modified housing to accommodate a wheelchair and walker, along with all the usual assist bars in the bathroom etc. We have attempted to even locate a respite facility for up to 90 days, just to give everyone involved more time to find a place for her also, but with no luck so far. This is becoming more frustrating as the days go on. Angela had a vision appt the other day to be fitted for some new eye glasses. The Doctor informed her that she has suffered a fair bit of nerve damage in her eyes and her vision will be impaired undoubtedly forever, even with corrective lenses. With glasses, she should be able to function fairly decent though. Between that, the kidney failure, and all the other numerous physical impairments that she now has to deal with, Angela will certainly lead a very different life now.

Anyone who may have ANY ideas, thoughts or options on suitable housing........feel free to e-mail me. We are at wits end. Keeping in mind that Angela has a very limited income and has no disability insurance etc. My mail is ed_mcdade@hotmail.com

Not giving up.....

Ed