Emerging

Had my C-Scan on Monday as well as a visit to the dentist at PMH. Dental report was very good as I have been following the fluoride protocol. Salvia test show a little salvia...a level 6 whatever that means. Lindia, the dentist said that it's really very much a individual 'crap shoot' how much each person ends up with. Salvia levels can improve in the first year or so but never reach adequate levels compared to what is needed to function normally when eating.
I was very lethargic on Tuesday I think because all the dye etc. from the scan was leaving my body. Wednesday I awoke with more energy and drive and had a good day to the point where I did some resistance exercises on my TRX system. Trouble sleeping Wednesday night led to a slow Thursday. I think it was partially because I was going off the drug for ' restless led syndrome' I had been taking to help me sleep. Back to good energy and another workout on Friday. Good sleep last night and feeling good this morning.
Busy week ahead. Meet with PMH team on Tuesday to review C-Scan results, which hopefully will be good, then hoping to get the tube out. I say hoping because I am 'hoping' that the surgeon on my team will agree to remove it instead of me having to wait until August 11th for my scheduled appointment. I am hopeful!
I have a meeting at 11 that day with a dietician who I hope, there is that word again, will help me get my body back. I need to get a better handle on what to eat and when given my restrictions in terms of amounts, what will go down, what creates dryness, etc. Unfortunately most all fruit creates instant dry mouth. Oddly enough I can eat some nuts and even the odd potato chip.
My daughter Erika arrives with husband Lanny and two grandchildren Madlyn and Timmy on Thursday. Busy week ahead.
Mornings at the cottage are starting to feel like Fall already. Only 12C at 7 this morning.
Had my first business conference call in months this week. 45 minutes on the phone talking was both demanding and 'drying'. I am scheduled to speak at several large events from mid September on so have to get back into presenting shape. Will work on that in next 6 weeks....enough from me. Hope you are all well and enjoying the later part on the summer.
Warm Regards,
Peter

The emergence of Rip Van Winkle

Sleepy might best describe my week. It was low key with just Sandra and I for the most part at the cottage and I was both tired and I am sure for Sandra tiring! I have been warned by many of the fatigue that comes post radiation and I got a first hand snozzefest of it this week. On 2 days I don't believe I even left the cottage. Sometimes my first nap was before 10 AM.
I am told healing is hard work and eats up energy and the more I burn on other things the longer the healing will take. This week I really took that to heart and rested every time I was tired. As of yesterday I have been 2 weeks not using the tube. I have gained no weight despite putting 2500 to 3000 calories a day in my system but my weight is stable...I am in the fly weight division.
Tomorrow at 9:30 we meet with the dentist at PMH to see how I am progressing there and then I have a C-scan at 10:30 that the Oncologist will review with me on the 3rd of August. It is obviously a check for cancer or the lack there of.
I believe I have finally got the 'this will take a long time' message but it's still a bit of a grind. The western contingent of grandkids and parents arrive in a week and a bit so alone time is very valuable and we will take full advantage of it this week. Hope you are all enjoying the summer. Thanks for being here.
Warmly,
Peter

Eating is eating me up

I realize dear reader you deserve a more optimistic blog given the past few whiners. If I am fair and level headed, which I am not being optimistic and expectant, things are progressing...probably as they should. I have not used the tube in a week and am trying to get 2500+ calories in a day. I have done so for the most part but none of them are enjoyable...I feel like a fois Gras goose...being forcer feed!
Tracy Wilson is now at the cottage with Sandra and so I now have 2 people badgering me, or coaching depending on your outlook. She had arrived with tubs of Isogenics I now drink at various times.
The good/bad news is that without needing to use the tube I have more time to do things, calorie burning things, like cutting down a tree, digging out the root, and building the kids a sandbox where the tree used to be...then there's the matter of a load of sand to wheelbarrow downhill. In short I continue to be a slow learner and my weight is even lower in spite of the calorie intake. Maybe you can' t teach an old dog new tricks. Things are better. I do get a pain in my side near the tube entry point which we are hopeful will leave with the tube. We hope to make arrangements for that very soon.
All and all an improvement. Sleeping medication is working. Starting to reduce that slowly. Looking forward to twins, guests and all others I love dearly leaving today so I get a week of relative solitude. Warm regards to each and every one of you.
Peter

Hope on the horizon

What a week. Difficult times with sleep finally resolved with a drug from my GP on Wednesday. Starting to catch up on rest and with that has come some energy. Last few days have been much better. Was at cottage on weekend and a 10 year old girl asked me why I used a feeding tube and didn't just drink the Neutren. Out of the mouths of babes. Got up the next morning, tasted it...not horrible...haven't used the tube since!
Am now trying to get much more nutritious ...it's a work in progress but coming along each day. Had some wonderful visitors who brought energy and kind words as well so it all helps. Actually played 18 holes in a charity event which was a major goal I had set months ago. Worn out the next day but worth it. Even hit a few decent shots.
Number 1goal is to eat a healthier diet and gain some weight. As I get more active I burn more calories so I'm stuck at a paltry 140... certainly no 'gun' shows in the near future. Went to Swiss Chalet tonight and actually got down most of a baked potato and half a chicken thigh. First meal out.

I do feel I am on the up finally. I have, however, a much more realistic perspective. I know it,s a long road and there will be times/days where things aren't progressing as I would want them...dealing with theses is also part of the recovery process.
Thanks to the great many of you who send me thoughts, ideas, and wishes....food is not the only fuel.
Warmth to you all,
Peter

Happy Canada Day Weekend !

What a week. It begins with a ‘set back’ but ends on a ‘getting better’ note. With great bravo in my last blog I laid out my intention to stop taking morphine and get the tube out ASAP. On Friday night at 11 Pm I had my last dose of morphine…4ml. I had been taking the drug every 4 hours. I had stepped it down from 10 to 8 to 6 to 4 over the last 4 weeks. On Saturday talked to the pharmacist to make sure I wasn’t doing something ‘crazy’. She said it sounded like a good progression. Even at 4ml I sometimes would be an hour plus over my time when I remembered it… clearly I didn’t need it for pain.

Went to bed Saturday night and awoke an hour later with ‘anxiety’ in my chest…what my father in law used to call the ‘fidgets’. I had been sleeping well for months…not any longer. I am up for hours during the night. The withdrawal symptoms came soon after…bit shaky (which I am naturally as you all know!) and constant diarrhea. My weight dropped to 139 by Monday as nothing stayed in me long enough to be of any nutritional benefit. On top of it all I felt really lousy and energy less. Finally went to Princess Margaret Hospital on the Monday and got 2 drugs one to stem the flow and one for nausea.

Turned a corner on Wednesday night… in the middle of the night…found myself doing laundry and ironing to keep busy and knew my energy was back. Still no end yet to the sleep issue…I’m typing this at 6 AM.

The doctor was surprised at my reaction to being on morphine for 10 weeks or so. I had some concerns about it all along which is why I cut it back gradually on my own. They had told me that I would have to “get off that soon” but there was no info on how and that I might have an addiction reaction. Only Sandra’s research on the web told us I was in withdrawal.

So here we are on Friday the 2^nd of July and I have had to do a reappraisal of my path to recovery. Turns out it will all move at it’s pace and I need to accept that and work with where I am at in terms of recovery. I have readjusted, as best I can, my fall schedule, as it is clear this is truly a 4 to 6 month process until you are ‘OK’ and longer until you are ‘Fine’.

As far as the tube is concerned the very clear message I got from the doctor was until I got to a stable weight and maintained it for 2 weeks without using the tube, the tube, was here to stay.

I meet with Olga at 8:30 this morning then Sandra and I head to the cottage where we will meet up with Carlye, Steven, and the twins. I am only up for a day or 2…we’ll see how it goes…but I will be putting my son in law to work!

Thank you for being here. Every week new people find out and join the support team.

Warmly,

Peter

P.S. If you want to see the photos the kids sent on a weekly basis that formed the message We love you Dad!....here is the site… http://gallery.me.com/jamesajensen/100085