Happy New Year!

Happy New Year!
Hope you had a wonderful holiday week! We were very busy here as kids with kids came and, thankfully, went. December was a busy month with no real changes on the health front. My December 28th meeting with the doctors at PMH has been shifted to January 11th so no new news. Weight has plateaued, stuck, at 147 despite good input during the Christmas period.
Had a wonderful package of hand drawn cards from grade 1 students at a school in South Africa that Sandra and I are associated with wishing me a healthy recovery. There was also a complete bound book of drawings of love and concern from the kindergarten students… very thoughtful and very touching to say the least. My friend Peter Oliver is the force behind the construction of the schools through his charity the Leacock Foundation. An exceptional story…Google it if you’re interested.
Hard to believe just 12 months ago we were in the midst of final preparations for the 2010 Olympics. A lot has happen since then but fortunately it too feels like a distant memory. Eating more things but none too exciting as any spice that has any heat to it is bothersome. Had to try the odd sip of wine over the holidays…that beverage is a long way away if ever. Talked to a friend who is 9 years post treatment and spices still an issue. For him beer is more drinkable than wine but neither works for me. Surprisingly I don’t miss or regret that loss… but spicy chicken wings etc. that’s another matter!
Have a terrific 2011! Will update you all on February 1.
Warm Wishes,
Peter

The Best of the Season to all of You!!

Still kicking!
Hello all. Missed you these past 4 weeks but updates on miniscule improvements would have been boring. Over the course of a month however such improvements are more noticeable. Weight was 147 this morning and I am clearly in a lot better shape. Running or biking 30 minutes at least 5 days a week and doing resistance training at least 3 times a week.
Just back from presenting in Arizona, where I also managed to play a reasonable game of golf. It was my first flight in 7 months. We, those of us at PCI, have been very busy following up on all our projects that came out of the retreat. Had a big meeting on Friday and there were 15 reports on initiatives that are under way. Fantastic!!
In terms of my health the saliva is the biggest issue. Winter heating can add to the dryness. I would say, however, that it comes and goes through the day. I don’t know if that means I am producing some saliva at certain times or not. I have a meeting with the medical people at Princess Margret on December 28th so will let you know in my New Year’s blog on January 1.
Wish you and yours a wonderful holiday season.
Warm Regards,
Peter

Thank You

Hello All,
Another week of moving forward with small gains on many fronts but still much room for future improvement, particularly in the food consumption department. I am able to eat more of most things but lots of restrictions. Still can't touch anything with spice, pepper, or strong flavours like ginger, cinnamon, etc. Anything with alcohol is out of the question, instant activity in every sensor in my mouth.. and believe me I have tried! Even something as benign as sparking water will set off the taste sensors in a not pleasant way.
Had a 2 day company retreat on Sunday and Monday. An excellent 2 days of looking to growth and the future with a massive list of 'to dos' as a result. Lots of energy and excitement around what is possible.
Managed to get a golf game in Thursday. It is so wonderful being outside in the fall. Warm sunshine, then dark clouds, wind, the colours, back to sunshine ... it all changes so quickly and such 'freshness' to it all. Sandra and I are at the cottage this weekend to close most things up. We will snowshoe in to the cottage in January/February so I stock it with water and food supplies now to cut down on what we have to carry ... have taken in a few bottles of wine just in case my mouth sensors have evolved by then!
This is my final weekly update. As mentioned earlier I will move back to my twitter account but update here on a monthly basis. Next update will be on December 4th. I want to thank you all for following along. There is something very wonderful in all of that. It really helped keep me on track as I needed to report to you each week. The sense of support was so very, very wonderful. I can't tell you the numerous people who I really didn't 'know' who have sent messages telling me that they were with me, following along, etc. Many acquaintances I had lost contact with, for example a woman that I had taught in high school in 1968/69, who sent wonderful, uplifting notes, emails, cards, etc. I have been very fortunate to have each and every one of you. Thank you, thank you, thank you.
With warmth and love,
Peter

Yo Yo Weight Week

Hello All,
First and foremost... thank you for all the positive feedback on the Ignite newsletter. We have had more 'clicks' through it than any other issue. Lots of very thoughtful comments on the "When Heath and Performance Converge" article.
Now on to the week that was. Got a bit complacent and didn't stay as diligent on the calorie intake and bingo... my weight dropped to 142 for a few days. Back on track and at 144 this morning. As my exercise program increases in both intensity and duration (time) I obviously burn more calories. I started 'really' exercising on September 1 and so it's not surprising that 6-7 weeks in muscle mass has increased and therefore calorie consumption.
A very good week health wise with small improvements that are really hard to articulate. Can take a bit more food with less discomfort. The yard sticks are a bit strange. For example yesterday at 11:30 I happened to be at Just Hockey which is beside a Swiss Chalet so I went in and ordered chicken soup to go... from Swiss Chalet not Just hockey... their soup is terrible. Now a month or so ago I would have gotten two lunches out of that soup whereas yesterday I consumed the whole bowl and then afterwards had the realization that this is just another indication things are getting better. Boy that was a head shaking story wasn't it!
Got in a game of golf on Thursday ... no yard sticks there ... I still suck!
Have been meeting with a digital marketing company to try and learn what might fit best with what we do. Facebook, Twitter, Blogs, Linkedin, ... it can get confusing for a Boomer. Tomorrow we start our 2 day company retreat and am I ever looking forward to it. Want to figure out how to energize the company through growth.
As I mentioned earlier I believe I'll stop the blog once I get to 145 and move to monthly updates. I'll go back to my Twitter account so you'll be able to stay in touch and be forewarned when an update is occurring.
Hope this finds you in great spirits and good health. Until next week...
Keep your head up and your stick on the ice...
Peter

Social Butterfly

Another good week with lots of social events. Dinner out 3 nights and off to a 50th Birthday party right next door in 10 minutes or so. Can't eat everything... no spice... but I manage very well. Also managed a game of golf on Thursday.
Weight is about the same... depending on the day from 143 to 144. Have been working on video scripts for websites and our programs. It is so nice to have the time to do it. I had cleared my October schedule in late August with the uncertainty, health wise, after the set back. Now I have time to create... which I am really enjoying. Next speaking engagement is November 2 and 3 at Queen's.
A good week energy wise. Have increased my runs to 30 minutes... boy coming back is tough. I am sucking air 3 minutes into it. Weights are much easier and the gains are coming nicely. I look like a thin version of Arnold.
Hope you all had a good Thanksgiving. Talk to you next week.
Warm Regards,
Peter

Happy Thanksgiving!

Greetings from Black Lake. At the cottage for the holiday weekend. Twins and parents arrive in the morning....calm before the storm so I'll get the blog written now before one of the terrors trashes my iPad.
I will start by apologizing to my Danish cousin and her husband who informed me that they sent the half full glass. He informs me Danes have no nickels and therefore my 'manhole cover joke' didn't apply.
I am now a blimp like 143 and, despite a slight cold and incredible dryness now that the heat is on in the house, doing very well. Had a wonderful dinner with friends last Saturday. Nice to get out and socialize again even if I did insult the host by not being able to eat certain items...like pumpkin pie...which I have always despised but now have a built in excuse to reject. Had a terrific time last night with 3 of our Olympic gold medal hockey players. Went out to a small Italian restaurant I have gone to numerous times. I must admit I do miss my former love of flavorful food. Can't handle anything with any spice, heat, ... Beer and wine are impossible. Instantly feels like a bunch of needles in my mouth. My wife is slowly, I am being political here, diminishing my small wine cellar of my much loved Amarones.
Newsletter, Ignite, will be out on Monday for those of you interested.
Lots of meetings this week. Wonderful meetings that get me back into my work world which I am so glad to get back into. We have a 2 day retreat coming up on October 24&25...really looking forward to that as well as getting back to Queen's and finally teaching full days. Will be investigating humidifiers this week...any tips do let me know. Until next week have a great Thanksgiving weekend. See you then.
Warm regards,
Peter

The Mystery of the Half Full Glass

First a cancer update. According to the 3 medical doctors who we met with Tuesday all is well. The lymph glands have shrunk since last visit and they are very optimistic that means I am ‘good to go’.
Now on to ‘the glass have full’ mystery. I have been meaning to raise this for weeks and it slips my mind every time I do a blog. One of you kind folks sent me a glass that can only be half full as the bottom is separated from the top by a glass bottom. I use it every so often and it’ feels so different as it is top heavy and always top half full! I have a few suspects in mind but would love to know who sent it so I can thank them for such a concrete reminder of how I need to see my world. I suspected family members first but they handle nickels like manhole covers so I know it’s not them.
Had my first continuous run on Tuesday…20 minutes and 43 seconds (runners are precise about these things) and it felt very good. I get a lot of electrical activity in my legs after runs (I’ve been doing short track workouts) so asked my Oncologist about it. He mumbled the name of some condition that disappears in a few months and added, ”I’ve never encounter the problem, I never had a patient who asked about running or ran’.
Did a 90 minutes presentation on Wednesday…really enjoyed it. A bit dry on occasion…my mouth, not the content…but I’ll get better at managing that. Ignite newsletter comes out next week. If you don’t currently get it just go to the website (drpeterjensen.ca) and subscribe…it’s free…you get what you pay for.
Weight is at 141…goodness I may have to put the brakes on soon! All the very best to all of you. Talk to you next Saturday.
Warm regards,
Peter

Boring...and late

Was at the cottage for the weekend without my computer so this update is late. Things continue to progress. Weight has reached 140. My weeks are beginning to seem normal in the sense I am doing 'old' stuff I used to do. This week finished the content for the newsletter and taped the podcast that goes with it. Even got in some golf!
Have a meeting this Tuesday at PMH with my Oncologist. If the reports are favorable then I may cut back blog updates to once a month given there is not a lot of 'new' each week at this point. Have a 90 minute presentation on Wednesday that will be an interesting test.
I will be going back to my Tweeter account so you can stay in touch there with what I am doing professionally. Hope all is well in your neck of the woods. I have really appreciated the support and comments both on the blog and via email theses many months.
Warm regards to you all,
Peter

Boringly OK

This is getting wonderfully boring. Feeling better and doing a bit more on a daily basis. Drove to Queen’s on Tuesday afternoon and taught an hour on Wednesday morning before Peggy bailed me out and took over through to Friday .It felt very good to get back presenting. My voice held up but an hour was enough. I have a 90 minutes session on the 29th so this was an excellent preamble to that.
Was at PMH on Thursday for a CT scan. Went well. We review the results next week on Wednesday. I have met with my new nutritionist and am on a good path but she had numerous adjustments for me to make it even better. Weight has been good. I expect to crack the 140 barrier next week!
Four of our women’s hockey team retired this week so I sent them emails to which they have humorously responded. Just feels good to be back in the loop.
Wrote an article for our company newsletter called “When Health and Performance Converge”. It’s about the inner skills and the cancer battle from a personal perspective. I’ll put the link here to it once the newsletter is ready. I still need to record the podcast for it. You can sign up for ‘Ignite’ at my website, http://www.peterjensen.ca/
Not sure how much longer I need to keep the blog going…probably until about 145 pounds!
The very best to all of you…
Warmly,
Peter

Onward!

In a few words...a good week. Some ups and downs energy wise from day to day but overall much better. My weight continues to move in the right direction as I hit 137 yesterday...I'll be talking diet soon. Still dealing with heartburn/acid reflux daily. Have shares in Zantac.
At the cottage at the moment just back from golfing 9 holes...with a cart. Par on the 1st hole then straight down hill from there. On the work front I am thinking of going to Queen's on Tuesday just to meet with my folks who are presenting the program and touch base with the Queen's team so they know I am still in the game. May do the opening for 30 minutes or so on Wednesday morning if I feel up to it...just to get back in the saddle. We'll see. Hoping to meet with Sport Centre nutritionist this week as well. Have a CT-scan on Thursday to see if the small 1cm swelling where the tumor was has shrunk. Get the results the following week.
Have a great week. Talk to you next Saturday.
With much warmth,
Peter

Onward 1 calories at a time!

OK, let's get the big news out of the way right up front....I have ballooned up to 135 from the anemic 133 I was stuck at. Just takes 3000+ calories a day. Am going to meet with a nutritionist from the Ontario Sports Centre in the coming week to get further tips on my diet. Was talking with Adam Kreek of the gold medal men's 8 in Beijing Olympics this week. He had to consume 6000 calories a day during the Olympic year. In talking with him found out I'm on many of the important ingredients...whey, MCT oil, Lucine. L-Glutamine, flax seed oil, olive oil, etc.
THe past week has been good. Sandra and I went to the cottage for 2-3 days and ending up staying for 6. Weather was simply fantastic +30 every day and not a cloud. Was very good for me. Got some things done to prepare the properties for the coming winter, had rest when I needed it, got the calories in, and some exercise.
I am currently in Uxbridge. We are babysitting the twins while their parents are at a wedding in Calgary. Back to 'work' on Tuesday. PCI team meeting wednesday. it will be good to see everyone. I have decided not to fly anywhere until January so have had to cancel or transfer any presentations I had scheduled out of diving distance. Mel Davidson, women's Olympic coach, Andy Higgins, ancient decathlon coach, and Karyn Garossino, who works for PCI are all covering for me in Winnipeg in September. I hope to do some small bits at Queen's in September just to get back in the saddle. The big issue is dry mouth...after 5 minutes of talking I'm so dry I'm hard to understand. I am experimenting with various oral gels designed for the issue...but they don't last that long. I'm sure we will solve the issue. I also plan on going back to the speech therapist for assistance, training, and her ideas.
Hope this finds you all well and in good spirits enjoying the long weekend.
Warm regards,
Peter

Steady improvement....and a swim

Hello Friends,
Saturday afternoon found me lying on the dock in 26 C sunshine air drying from a swim in the lake. What a wonderful feeling given where I've been the past little while.
Things have been slowly improving over the past 7 days. Still have stomach/abdomen issues but toned down. Have started to get a acid reflux in the evenings so have taken Zantac a few times but over all am much better. Did light workouts most days this week including a few 200 meter runs at slow speed, glacial speed, on the track near my house. No change in my weight despite my daily calorie intake exceeding 2600 calories. 133 seems to be my number at the moment.
The improvement has brought psychological as well as physical relief. When I was experiencing stomach pain consciously and even subconsciously my mind wondered if there was something else not right, some damage, from the peritonitis and that mental program ran beneath the surface much of the time.
Came to the cottage on Friday and have been 'putting' around getting the place ready for the Fall and coming winter...yes winter. Had the pontoon boat and ski boat taken out for storage yesterday as I don't know when we'll get back up here. Didn't burn a tank of gas in either this year.
Hope you all are enjoying this beautiful end of summer weather.
Warm Regards,
Peter

Baby steps...but steps none the less

Hello all,
Monday kids left and I spent the next few days with very little energy and sleeping a great deal. Met with my GP and she feels it takes close to 6 weeks to recover from the peritonitis. I have been taking probiotics to try and help the abdomen recover. After a few days of little progress and my weight falling to 133 there has been a marked improvement in the last few days.
I am trying to get an appointment to have a GI specialist look at the area on my left side that still can act up and give me some pain.
All and all I feel more hopeful and have a bit more energy. Sandra had a long talk, 2 hours plus, with a friend of mine who is a California based MD and very open to all possibilities. That was very helpful. I have been focused on 3 things: get 2600+ calories in each day, walk around the block 3-4 times a day, rest every time I get tired. Simple but necessary.
Did a very light weight circuit this morning and 10 minutes on my bike trainer at the lowest level. Am I out of shape! Psychologically however it was a big boost just to do what would normally be laughable. I am hopeful that a corner has been turned and although I have much further to come back now I am at least moving in the right direction.
Went out to try and buy some pants that don't wrap around me like a sari as my current ones do....that was fruitless. Not many 30 inch waist 34 inch leg pants out there...none where I was looking. Got some nice shirts so I'll look moderately good from the waist up should I ever leave my cocoon and venture out.
Thanks once more for all the support this passed week. Energy is so vital to will and recovery.
Warm regards,
Peter

Level

A week of no gains or apparent losses. Stomach still uncomfortable and minor pain in my side. Dietician and daughter Dr. have focused on a fluid diet until thing settle down. Off the antibiotics as of today so that should help in the nether regions.
Have been at cottage since Wednesday night with 5 grand children and their parents. Quite a fun zoo. I am hoping to get this stomach setback under control this week so I can get on with the cancer recovery and gain some weight.
Thanks for all the support through this most difficult of periods. Calls, notes, emails, messages, and comments were all so helpful. I truly hope the next blog has more onward and upward in it!
Warm wishes to all,
Peter

Good news....Dark days

My friends this is a very hard blog to write. I will therefore rely on a stream of consciousness to try and convey what happened this week. I am just home from a stay in hospital. Let's start with the good news. I was told that there is a 90% chance my cancer will not return. Dr GG, my Oncology surgeon who heads my case gave Sandra and I the news on Tuesday in our review meeting for the CT scan I took a week prior. Great news! Better still...he agreed to remove my tube and did so in no time, effortlessly, at 10:40 AM Tuesday. We were surprised at the length of the tube and I of all the 'gunk' on it that got on my Armani pants I wore for the occasion.
Sandra and I left the upbeat gathering at 11 and headed for a meeting with a dietician we have hired to bring back my body. On the way out of the building I started to develop stomach/abdominal pain. I asked Sandra to get the car. Things got worse... I'll spare you the details but after a very painful day and 2 very painful car rides I ended up at emergency at TGH which is across the street from PMH. After waits, moving to a room in emerg we ended up seeing both Drs. from the ENT group and General surgery. I had x-rays, a CT scan, etc and stayed overnight in the room in emerg. I was then transfer to a room on 6 West in the ENT section. Dr GG gave up a bed but had general surgery take over the case.
Here is what probably happened. Some gastric fluid/bile/stomach acid slipped into the body cavity when the tube was removed creating a condition called peritonitis. Some gas and fluid showed up on the CT scan by my liver. it greatly irritates the body and leaves scar tissue. They were talking stomach surgery and a clean up Tuesday night but on Wednesday decided to see if I improved with no food or water in case the leak was from a hole in my stomach. I was 4 days without food and water. I have dropped a weight division from fly weight...bantamweight I believe it is called. All and all a painful major setback.
I did improve slowly and today after clear fluids caused no increase in pain came home with Sandra and my grand daughter who were visiting when the doctors came in. They also did a barium x-ray test on Thursday to ensure there was no hole.
I have given so much blood my right arm resembles a pin cushion and had many tests, Intravenous, etc. I am on 2 antibiotics to ensure this doesn't lead to any issues.
I am home. I am weak but I am home. I still have some pain and control it with 2 extra strength Tylenol every 4 hours. They gave me morphine intravenously until I 'found out' and said...not that stuff...I've done that battle...find something else.
Enough, enough, dear reader...I need to collect myself these next few days, find some inner resources, and move forward. my brain/mind feels like my body...beaten up and tired but I know in a very short time I'll find a path and move back on the recover curve. I am sorry to burden you with all of this but I can't tell you how good it is to get it out. I feel lighter, psychologically already. Thank You.
With warmth and kindness,
Peter

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

Week 100…perhaps not

Week 100…perhaps not

What to say about this past week? Blah sums it up. It wasn’t terribly bad and certainly not outstanding. If I was fair about it, which I’m not of a mind to be at the current moment…I stuck to my ‘only 3 feed tube feedings a day’ plan and got 1500 calories by mouth, etc. I guess I am tired of it all and want to move on to a life beyond the daily focus on food, feeding, when to take this when to take that, etc….end of rant.

The really irritating part is that I eat very little, or have a feeding and feel ‘Christmas Dinner’ full… which, of course, doesn’t allow for more food and moving forward. Then there’s the impact of the morphine on the elimination system…slowing it to a halt, the need to take Colace and other stuff to get things moving….OK I guess the rant hasn’t ended.

Here is what I have decided. As I write this at 11AM on Saturday I haven’t had morphine since 11 PM last night. I had gotten down to 4 ml from 10 so it’s not exactly cold turkey. I am going to get off the morphine. I am not taking it any more.

The 2^nd major change I am going to make is to get the tube taken out within the next 2 weeks… if they can do it, have an opening. Olga, my energy worker and former doctor said to me during my visit yesterday that the tube suddenly felt ‘foreign’ and I agree. It didn’t feel like that 2 weeks ago she added. A tube running through my stomach and the opening into the intestine has to interfere with food consumption in my opinion. It certainly must slow down how quickly the stomach passes on the food.

I have had more fatigue this week so I am resting more. My plan is to hold the course and slowly start to introduce a bit of resistance training into my program. I have been walking about 20 minutes daily and jogging between alternate street lights when I get to my crescent…it’s all of 5 intervals but it’s a start.

Did have a wonderful visit with Mel our women’s hockey coach on Wednesday. The gold medal teams will be gathering in Edmonton on Monday for the ring ceremony…each team member gets a beautiful Olympic ring to commemorate their gold medal victory. I won’t be able to go but I can tell you they are beautiful because she brought me mine… which I can’t show about until all the others get theirs on Monday.

I appreciate having you to get this all off my chest to. You’ve been a great listener!

Thanks,

With Warmth,

Peter

Progress!

Good week. I feel progress has been made on several fronts. Met with my Oncologist on Tuesday. He’ s pleased with the progress and looked down my throat. The mucus membranes are very sensitive and therefore my throat is still very fragile. That, according to my Naturopath is normal and he suggested a few things I can take to assist the healing and also help the stomach with digestion, etc.

The biggest area of improvement has been in eating. On Wednesday I decided to try and cut back on my reliance on the feeding tube. It’s an interesting discussion in that …do you wait until your eating is at a level that allows you to cut back or do you cut back and move your eating to the necessary level? I often ask athletes when they want to make a change if they should focus on thinking differently in order to change what they are working on or act differently. The answer, I believe, is do both. As an aside…this is especially true for developing confidence.

I now have reduced the number of feedings from 5 to 3 per day. Now I realize that this is not going to be as linear from here on in. You can push yourself to eat 800-1000 calories to replace 2 feedings but moving to 2500 calories a day by mouth requires a health throat, an appetite, salvia, taste buds, etc.

Another improvement is my energy management is getting a whole lot better. This isn’t rocket science. I needed more rest/sleep then I was getting. Like many of you I was so used to functioning at low levels of energy, fatigue, that I didn’t realize I needed much more rest. Everyone in the cancer world from my medical crew to all the books we have read talked about the need for more rest, more sleep…and that this will go on for a long time given the impact of the radiation on the body. I think I may have finally ‘realized’ it…that is it has become real for me. I started sleeping an hour in the afternoon and it makes a huge difference in how I feel and function later in the day. Evenings have gone from being rough at times to fine. Had a meeting at 7 PM this week, added a second nap from 6 to 6:45 and was able to be fully present and energized for the 2.5 hours we met.

Have started walking after breakfast as well. Boy, am I out of shape! I get winded going up a small 1% grade and Sandra is forever slowing down for me…don’t go there…I can hear your snide remarks about how that’s also true mentally, etc. Weight remains the same… I don’t have any… so walking in the wind requires that Sandra tether me to her with a leash. Still, I’m starting to get at it. Doctor doesn’t believe at my age I’ll gain back all of the weight… I need a new wardrobe as shorts, for example, that fit perfectly last summer now look like billowing bloomers. You younger folk will have to look that one (bloomers) up. Enough foolishness…we’ll see you next week. Thanks for being here and the comments you have sent me are wonderful.

Warm Wishes,

Peter

Finally...

Greetings and sorry for the delay in posting this blog, I had every intention of doing so upon my return from the cottage Sunday evening but my computer had other ideas. After much gnashing of teeth and assistance from my son Dane is very clear that my hard drive has crashed. Another item to add to today's to-do list.

The cottage was great in that we were there with my son and his wife who are heading to England for two years in a few weeks. There was much to be done on the property and they, as well as three of my neighbours were a tremendous assistance. There were two docks to put in, a tree in the water that had to be removed that the beavers had cut down and much weed eating and cleaning up to be done. As much as I enjoyed the weekend is very clear to me that the cottage is not the place for me to be at the current moment. Not only did we have to take up a ton of stuff to support me but our general water supply comes from a lake and I need to sterilize everything. There is also the question of my being able to control my urge to do more because, at the cottage, there is always more that can be done.

The week, as every week seems to, had its ups and downs. The downs are all around food consumption. I express and have a desire to take food by mouth and yet when even a small amount is put in front of me I often fail to finish it. There are a lot of reasons for this including lack of saliva, discomfort, things not tasting normal, and the fact it takes forever to consume even a small amount of food. I'm hoping to get some answers or at least direction on this issue this coming week. I have a meeting with a friend of mine who has been through this to pick his brain as to his experience and, on Tuesday of this week, I meet with my medical team at Princess Margaret Hospital for the four-week follow-up. Among other things they will be putting a camera down my throat so I’ll get some idea as to its condition.

Had some visitors this week and they all say pretty much the same thing... I looked great and am further along than they expected and my voice appears to be pretty much back to normal. This is wonderful feedback and very welcomed. I met on Monday with a speech therapist. She has given me a series of exercises for my throat and tongue to help break down scar tissue and move back to more normal functioning. The only disappointment is that I have to actually do exercises on a regular basis. I have to start incorporating them into my plan this week. Here's one you can try at home. Stick your tongue out as far as you can, bite down on it, now swallow five times. There's a workout!

Time for me to close up here and get this posted before it runs into next week's blog. Thanks once again for all the support and encouragement.

Still alive but computer crashed

Blog update June 5

A week of improvement with but a few minor setbacks always caused by me and the ‘get things done’ driver part of my personality. I have not yet reached any truly accurate self-view of what I can do physically and how far that is from the norm. On Wednesday, for example, I felt very good at 1 PM, after morning vitamin IV, so I decided to go and hit a few golf balls at the Donalda club, 10 minutes from my house. I thought I was reasonable in hitting for about 30 minutes but an hour later I was completely bagged and set myself back for the rest of the day. Last week I got in a battle with a section of my garden, drove through the work as I would have BC (Before cancer) and really wacked myself out. It will take a shovel across the forehead, about 5 times, for me to get this lesson…by the way…hit the balls surprising well!

On the food front…no big Macs but ¼ cup of cereal with milk and 10, yes 10, raisins…it’s coming. Had a scrambled egg with some cooked carrots on Thursday. My friend Peter Oliver, a restaurateur here in Toronto, heard I could handle creamy soups and needed to gain weight. He arrived at the door with large containers of soup made with potatoes, leeks, and numerous healthy items including 35% cream. I have enough to feed the Russian army. He also brought crème brule, a health nut’s favourite!

Another friend, Paul Comper at the Toronto Rehab centre has found me a speech therapist who has sent me a series of assessments and questionnaires. I see her this coming week.

Have the twins coming this Sunday, they were also here yesterday, as we will celebrate their 2^nd birthday. Grandpa is off to Canadian Tire later this morning to get 2 tricycles complete with bells.

Sandra and I have started meeting daily around the company and getting our heads back into what is happening in the enterprise. Our entire team has really run with the ball these past 4 months leaving us free to deal with the matter at hand. It’s time for us to reengage slowly and at least get familiar with what’s happening at PCI.

Lots of emails and calls this week from so many of you… support is a wonderful thing. Some one said years ago that you have to do it yourself but you don’t have to do it alone. I really get that now. Thank you.

Peter

Recovery week 2

Recovery Update

Had a good week with things slowly creeping forward. Taking fluids, shakes, some juice nectar, water, milk, by mouth but very limited chewing…virtually none. It’s quite interesting to try and understand the all of it. People will say to Sandra, “What stops him from eating? Is it painful, mechanical, etc.” Answer is all of the above and probably more. I haven’t chewed in 7 weeks at least so it is very awkward to do so…especially without the salvia we are all used to.

I hadn’t realized how highly involved the tongue is in the eating process and mine was radiated at the base and has a very limited range due to atrophy and scar tissue. I started a few exercises, simple things, like open your mouth as wide as you can…about half what it used to be…try and touch your tongue on the outside of you teeth from back to front both sides…hurts, eyes water…like any rehab dealing with scar tissue.

I also realized I just need to do some chewing and swallowing…get at it. It is actually quite easy to simply turn on the machine and sit back and be fed. I am on it as I write this blog. I have sped up the machine so it takes less time now…about 75 minutes compared to almost 2 hours. It’s pain free and I don’t have to think about whether I can eat something or not. It is very hard to come up with any comprehensive list of foods that are smooth, in sauce, gravy, etc that I like and don’t have the spices that will irritate a tender throat. Porridges, for example, would work but I really dislike them. Yoghurt works, some soups, etc.

Sandra and I went to the cottage for the day yesterday to plant out pots on the deck and the dock. Amazingly beautiful day and it was spectacular to be there. Had another good learning as I did too much…that pusher in me…and exhausted myself…got away with it after a 2 hour ‘nap’ but can’t go there again. So many people told me 6 to 8 weeks but being an optimist I figure…not me. Well if I don’t rein myself in at times and also intentionally start an eating program…I might be mid September…2011!

However… truth is things are going very well. The above is my attempt to give you some insight into the internal ‘dimension’ of what’s happening to and with me. Continue to get weekly vitamin infusions and to do a session with Olga my ‘energy doctor’. She is a very interesting person. Being a former Russian doctor she has a very big picture of where I am at on all fronts.

It was extremely hot all week so, of course, we had the roof on our house replaced. What better time to send two 70+ year old men up ladders carrying bundles of shingles, in the sweltering sun all day... man were they impressive. I really though, given the weather, we might lose someone…but it’s done, on time, dumpster is gone. Good tradesmen are worth their weight in gold. Unlike your scribe who has had the bathroom taps (On my side, not Sandra’s) apart with no apparent solution in sight for over 2 weeks.

We now have “we love you Da-“ on the picture front. The D was Brandon, one of the twins, holding up a giant red D. The ‘A’ my daughter in law Louisa with a horse at paddock A on their family farm in Morden, Manitoba…boy they have gone to great lengths to get these great photos. Just my daughter Carlye and little Timmy left…I’m saying she’s a D and he an ‘exclamation’ point…we’ll see.

Have a great week. I’ll hopefully be back in a week with stories of Big Macs eaten.

Warm Wishes to all,

Peter

Update…Things are Improving!

Update…Things are Improving!

The heading says it all. It has been a very good week with lots of small, but important gains. On Tuesday I woke up with some energy so after my feed I got in the SUV in my morphine loaded state, and headed to Home Depot and bought 8-10 flats of flowers for the pots and the garden. Doesn’t sound like much but I hadn’t driven in 7 weeks! Have since been back for more.

Wednesday and Friday had vitamin infusion at Naturopathic College. Everyone has commented on how the skin on my neck has improved dramatically and how different I look…I hope so… I have looked like one of the Munsters for the last few weeks. On Thursday came a biggy. My stomach/abdomen area has been sore/upset for weeks…always aware of it. Sometimes seemed to be nausea and others just unsettled. I woke up at 5 AM Thursday and had the realization that it might also be hunger. The tube that feeds me doesn’t end in the stomach. It actually put the feed in the upper intestine, which is why it has to go in so slowly.

I got up drank a small 3-ounce shake of rice milk and Pro Gain (protein powder and vitamins) that normal put in with the syringe and felt almost instant relief. I’m not saying it goes down easy but I had 3 more that day and have carried on since. I have cut back to 4 tube feedings a day. On Friday I even had about 1 ounce of cooked carrot…can a burger be far off?

However, especially because I am much more active now my weight continues to fall. Am now down to 144 from 170 but apparently it will do so a few more weeks… that is according to the medical people we saw Thursday at PMH. They checked out the Parotid grand and declared it healthy… and me looking surprisingly good.

Weather matters. It has been so beautiful and getting out for short stints in my garden, which looks amazing I must say, has been extremely therapeutic. Long weekend is here. We actually debated going to the cottage for a day but saner heads prevailed as we saw all the logistics, tubes etc. and didn’t want to jeopardize the progress being made.

Now I have the twins coming over on Sunday to help with the garden. That will be stress free…especially them learning the weed/flower distinction. I’m sure they’ll get it… they are very bright… by the time they are in high school! They are boys after all.

Hope you all have a great May long weekend. Love to all…

Peter (a work in progress) Jensen

May 15 Update

Hello All,

Well I am in so called ‘recovery week’ in that treatment finished on Tuesday. I have be warned by almost everyone I encounter who has gone through this that this is the toughest period because you haven’t hit the turn around point on the run yet and once you do the route back is much longer in time then the 7/8 weeks it took to get here. I got a glimpse of that at 1AM in the morning when I woke up with a sharp pain in my jaw joint…back to PMH on my first day ‘off’ from such activity. Met the radiation nurse and Dr…infected parotid gland…antibiotics for a week 3 times a day added to the schedule. Oh well.

Thursday brought cramps and diarrhea…side effect of medication. We have been in a 7 week quest to balance out the laxatives because morphine can lead to constipation. Literally got it right for 2 days then this. Friday saw family doctor who suggested just lay off laxatives meds. We are now letting antibiotic and morphine dual out for bowel supremacy.

Also had my first infusion of vitamin cocktail at Naturopathic College on Friday as well. Will do that twice a week for next little while. One of the nastier issues is mycosis, a very thick, ‘unspitable’ mucus that build in your mouth and collects at the back of your throat…tough to deal with. I have taken an aggressive, hack like hell, approach until yesterday when my upchuck reflex kicked in and I lost 4 hours of feeding in about 30 seconds.

Home care nurse came yesterday. She was a wound care specialist so I now have a very impressive bandage on the worst area of burns to my neck from radiation. Mine don’t look to bad compared to some I have seen on the internet.

I can’t shake my optimistic view that I will recover fast and more completely than what I read. I have no evidence for this and indeed the scale now tells me I am down 23 pounds. Trying to swallow once an hour and plan on starting to walk more. I also think we can start to create a few healthier things to put into me.

On the picture front things are, well, SNAFU, situation normal all ‘frigged’ up! I now have WE LOVE U…the U being Lanny, my son in law, in his fireman’s outfit with the hose shaped like a U. I gather from side conversations that there should be a y and an o before that U. I’ll keep you posted. I am going to attempt to add the pictures to the blog. That may take a while... and help so check back in a day or so.

Thank goodness for wonderful diversions like the play offs and my beloved Jays and all the new people I hear from each week. Thanks for listening to this…it’s nice to get it off my chest…what’s left of it.

Warm Regards,

Peter

Well here we are…33 treatments done and but 2 to go. Being the one getting the 33 I would not say it has flown by but I would say I am very thankful to be near the end.

My voice has all but left me. I can hear the ‘chirps’ from some of you on that one. I am very interested to see the recovery curve. I get very mixed messages as to time and function. The good news is that I can do more. By that I mean my hands, and the hands of some of those who support me from an alternative perspective have been very limited by the treatment protocol…no antioxidants, etc. As of Wednesday we can do what is necessary to bring my ‘20 pound lighter’ body back to a healthy state. Every time I hear that Dr Bernstein ad that guarantees you’ll lose 20 pounds I think, “I got another program that will do that as well!”

It was a rough week until Thursday and then things turned a bit. My Oncologist made an interesting point at our weekly meeting. He said the body knows how to deal with most stuff like broken bones, the flu, etc but it doesn’t know what to do with radiation. He said he sees an improvement in the last week sometimes because the body has started to figure out how to heal from radiation and then, of course, the treatments also stop and so things can accelerate.

You will all want to know how ‘the gardener did’…great and enjoyed it. He and Dane are off to the cottage this morning to cut the properties. It’s very cool, rainy and there is a small chance of snow! The boys will be in a bug fest up there…bug shirts are a must. They’ll get the docks in, cut/weed eat the lots and generally work like heck under lousy conditions for no pay! What’s more amazing is our neighbours went up yesterday to get everything set up, weed ‘whackers’, lawn mowers, loppers, etc. Theses people need to get a life. You know, of course, how very appreciated this all is. People have been simply amazing.

On the ‘picture’ front here is what has happened…nothing. From overhearing a few conversations I believe there has been a big glitch in the works at the photo shops end. So even assuming Lo__ __ will actually be love may be an error. It might be a message for my 70^th birthday given the current pace of the photos.

Thank you all for sticking with me through all of this. I have very much felt you presence and support.

With warmth,

Peter

Hello All,

Well week 5 is almost over and the end is, if not in sight, then around that next corner out there. There is no question this is getting tougher and things compound and the side effects pile up on each other. I thought I’d give you a look at a day in the treatment program by way of the daily schedule Sandra publishes each day to keep me/us on track. I am not sure how one goes through this without a ‘Sandra”. I quite simply couldn’t do it without her. Here is Thursday’s schedule. I know those of you who play on national and Olympic teams complain at times about scheduling and last minute changes. This is in another league.

Sandra’s Schedule for Week 5 Thursday

6:00 or when he gets up: Rinse mouth with baking soda. Flush tube. Then flush through Bromalain and pro biotic.

6:30 or earlier. First feed.

7:00 Interrupt feeding for Morphine.

8:30ish Finish feeding. Flush twice. Once with tincture.

Rinse mouth with L Glutamine

.Prepare pain meds to take to PMH.

8:45 Leave for PMH and treatment.

9:30 Tammy (nutritionist)

10:00 treatment

10:30 Clinic (weekly mtg. with doctor and change dressing on tube)

11:00 Pain meds.

11:45 Home

LGlutamine rinse.

12:00 Second feed. Flouride treatment. Tincture.

3:00 Take pain meds. L Glutamine.

3:00 Third feed - Partial feed ‘til 4:00

4:10 Leave for Treatment

4:55 Treatment.

6:30 Fourth Feed. Tincture. Pro biotic, bromalaine, and Nap? Baking soda at end of feed.

7:00 Pain meds

L Glutamine.

8:30 Fifth Feed

Rinse with baking soda.

Bedtime Laxatives?

11:00 Pain meds.

Once we meet with the doctors and nurses at 10:30 it all needed to be adjusted to include to ‘saline’ treatments for my neck as they are worried about the skin breaking open due to the repeated radiations. We have now added those to the routine. My biggest issue over the past few days has been nausea so we have been trying to figure that one out. We have a few new things we’ll try today as we monitor it.

Wonderful things are also happening. My kids and spouses and grandchildren are up to something. I get 2 photos in the mail every 3 days or so that are going to spell out a message eventually. They are wonderful photos with each having a ‘letter’ in it. First one was Kaili with a slew of hair elastics in the form of a large ‘W’, The second Hilary with all her shoes in front of her forming a very large ‘E”. So far I have ‘We Lo----------‘ with others to follow… I presume. I had hoped after the first 2 letters that it was going to say ‘We’d like to send you lots of money’ but the Lo screwed that up. I suspect it’s going to be ‘Love’ and if I was sarcastic I’d say that has foul many things up! I jest of course because it’s all wonderful. My son James arrives tonight to spend the next week with us. He's about to become a gardner... but doesn't know that yet!

Well that’s enough to give you all nausea so I’ll stop here and once more express my heartfelt gratitude for all your support.

With Love,

Peter

Well it's the end of week 4 and I have done 21 treatments with 14 to go. It was a tough week early on with break through pain etc but on Tuesday Carlye came with me to PMH and we got my medications straightened out. I am now on morphine every 4 hours and things are under control as much as is possible. I have a bit extra that I am willing to sell to help defray parking costs.

It takes about 10+ hours to get the 5 feeds through the tube each day. On days when I have treatments that literally leaves 20-30 minutes twice a day for a 'break'. Given the beautiful weather and the fact my garden, which is mainly perennials, is jumping out of the ground I have been out there every break and any other spare minutes I can find. Evening feed coincides with hockey and or baseball games. How about those Jays!

My youngest grandchild arrived for a visit yesterday, young Timmy from Canmore. Being a very thoughtful child he brought his mother Erika. They are in town until Tuesday.

Been every bit as hard as I expected but the support team at PMH is fantastic and always trying to help me get what I need at the individual level. What works for 1 person doesn't always for another. This week on Wednesday, for example, they kept me after 5 PM because they wanted to check out why my white blood cell count was lower than expected. Did blood work and then put me in with the emergency team to have a feeding while my blood results were being done. The stories that came into that room in an hour made me glad I had my problem and not theirs! I so empathize with all these normal people going through such an abnormal experience with courage, grace and dignity.

Thank you, one more time for all the catch ups, notes, emails, posts, etc. Each one is energizing.

With much warmth,

Peter

Well a long update as much has happened this week. Monday and Tuesday were 'normal' and I felt pretty good. Wednesday I was scheduled for an X-ray to check the tube as it was working very slowly. I'll spare you the OR details. The tube had a loop in it so they pulled it out, which was a bit uncomfortable, but the 'installation' of the new, slightly larger tube was... very uncomfortable. It all happened in a matter of minutes with no anesthetic, freezing, etc. I was out of commission for the rest of the day.

Thursday brought improvement and a big change in protocol. Carlye, my daughter who is an MD, Sandra, my wife, and I had a 5 PM conference call with Dr Sui my chemotherapy oncologist. It was a follow up to our meeting last week with the radiation doctor in which we asked very pointed questions about the chemo and what we gained, and lost, because of it. Dr Sui was amazing. No defensiveness, no agenda, she just listened, answered the questions. In the end she said that I lost very little, if anything by dropping the chemo from the program. Furthermore she made it very clear this would not really effect the outcome. She and John, the radiation oncologist have suggested a slightly different radiation protocol. I will now get radiation treatments twice every Thursday. I still get a total of 35 treatments (15 are done) so my treatment will now finish on May the 11th. This is very good news as the chemo kicked the crap out of me.

Generally things are getting harder each day. Mouth and throat sores make eating a chore and I see why anorexia is such a fear. You just don't want to eat. I weigh 153 at the moment, down from 170. I have started using the cans of Nurtren with the feeding tube. I now have a pump to regulate the speed of the feed through the tube. That is very helpful. Thank goodness for my Blue jays and the Stanley Cup playoffs as each feeding, for 375 calories, takes 2 hours. Our basic focus is on treatments and trying to get 2100 calories into me each day.

Well that's a bit long but now you are up to date. Spring has been amazing in Toronto. Spring flowers are up, the leaves are bursting out... hope is in the air everywhere.

The very best to you all. It's so nice to have you all on board.

With Warmth,

Peter

Hello All,

Well week 2 is done and some welcomed recovery over the weekend. Nausea persisted until about Wednesday which led to much too much weight loss...15 pounds. Managed to level things out since then. Got the feeding tube installed Thursday. Ended up with Dr Ho who invented the procedure years ago and did a very neat job. The nurse in the radiation nurse's station told me I was the 1st she had go through it not needing any pain medication. Had nothing to do with me, the man did a very neat job. Only one draw back. At 5:30 when we tested it with a syringe of water it appeared to be blocked. The surgery folks were long gone and no one wanted to pound on the syringe to see what would happen so we took the cautious approach and waited until 9 am Friday morning to solve the mystery. After radiation at 9 the nurses loaded up a syringe and bingo... it worked fine... so who knows?

Lips were a mess from Thursday on but have cleared up a bit on the weekend. Have used the feeding tube twice to get extra calories in my system. Have very little appetite for anything so eating is a chore and that will only get worse. Glad to have the tube as it takes some of the pressure off. Start week 3 tomorrow with a late radiation at 5:30. Have 4 ticket to the first place Blue Jay home opener tomorrow night but have decided not to attend. Will wait for World Series games. Sandra had knee surgery on Friday, is doing very well, but we need to lay low.

Couldn't have gotten through the week without all the volunteers. Drivers, meal providers, company keepers, errand runners, etc. On Friday what with Sandra going north for surgery and me heading south with the feeding tube issues we needed all the help we so wonderfully received. So many kindness by so many people. Thank you.. all of you.

With warmth to all,

Peter

You should feel very fortunate that I do the updates on the weekend. Had I done it yesterday or any day since Tuesday's chemo the 'Whine' factor would have been much higher! Nausea, even when the medication prevents 'upheavals' is very very unpleasant. The meds also introduce some other 'fog' between me and the world...more than normal that is.

The 'lump' on the side of my neck has shrunken considerably which led to much inner speculation on my part as to the need for such radical, long term treatment. Psychologically I am trying, of course, to find an escape hatch out of this ordeal. A Thursday meeting with John, radiologist/oncologist makes it clear that we stay the course.

There have been many adjustments to my radiation mask in an attempt to get me into the exact position needed for treatment. In the end it all comes down to shims, wedges, and the odd piece of padding stuck here or there. Robin, our hockey trainer, would have been ideally suited to help them out in that regard.

Exciting week ahead. Daily radiation with a big 'feeding tube' meeting on Tuesday and the installation of said tube on Thursday. It goes in through the stomach wall and into the small intestine. Not stitched in but rather taped on the outside. Sandra is pushing for a larger tube so we can actually put nutrition into me as opposed to their version of 'ensure'. That many be a bit of a battle. We'll see.

Hope you all have a wonderful Easter weekend. Have the 20 month old twins coming over Sunday to liven things up. Will update you all next weekend. Once again...thanks for all the support!

Hello All,

Another week has gone quickly by. Let's hope the next 7 go as quickly! Meeting tomorrow with an Naturopath to get some advice on dealing with side effects, etc. then start treatment with radiation at 2:45, then meet with dentist at hospital. It's a very busy week. On Tuesday I have a 'mental' test at 9:15 to measure if I get any Chemo 'fog' over the next 5 years. It's a research study I agreed to join. Then radiation, admittance to the hospital and Chemo via IV. I overnight in PMH, have radiation at 12:40 Wednesady then, if all is moderately well, head home only to return Thursday AM and PM for 2 radiation treatments as Friday is a holiday! We also meet with the medical team late Thursday afternoon. That meeting will happen every week.

How am I doing? In truth I feel great. I feel healthy and fit. I know this will change soon enough but am enjoying food and flavours. I was told to gain some weight and have tried my darndest! They tell me I'll loss about 10% of body weight over the course of the next 2 months and don't want me dipping below that level.

It's an interesting psychological battle in that in almost all instances over time things get better whereas in this instance things will get worse. I have recovered from sprains, injuries etc. and as time passes you know you'll be feeling a bit better each day. In this treatment better doesn't even rear it's head, begin slightly, until about June 1 if all goes well. Each day is progressively worse than the previous one until that point. That's what I have been told by those who have gone through it. I figured martinis or Amarone down the feeding tube but that has been nixed by the medical grinches.

Once again thank you for all your love and support...it means a lot more than words can say. Warm Wishes to all.

Peter

Hello All,

Well it's been a busy week of parking, poking and prodding at Princess Margaret. The end result is that all biopsies came back negative. No primary has been found. This means they will radiate the obvious tumor on my neck and all other suspected sites including the other side of the neck. Met with Dr Sui, the Chemo Queen yesterday. She is a delight. I'll get Chemo on week 1, 4 and 7. Week 7 she says will be a challenge but she assures me that 'we' will do it. Another of the very positive competent world class practitioners at PMH.

I should have bought shares in the parking garage. Yesterday's appointments at 9Am and 4:40 PM ensured another $ 40 day. I rather be paying for green fees! I now have an official start date on March 29th. No overly happy with that given all the pre work we did in Vancouver to speed this up but the system moves at a pace I can't effect... that many be a big part of my learning. Get radiation on the 29th and for the next 34 week days after that until May 14 (that might be extended to make up for holidays or down days for equipment) and get my Chemo on the 30th. I stay overnight on any Chemo days so they can watch me and ply me with anti nausea drugs. I am sure there have been members of audiences at some of my speeches that wish they could have had those drugs!

Have talked with more folks who have gone though what I am facing. Constantly learning new things to help both physically and mentally. Thanks to you all for the amazing positive support. I'll update this as things progress and/or change.

March 16 update

Just a bit of news. Had 3 meetings yesterday, an anesthetist, then a hearing test( to set a base line for my current hearing level as treatment may effect it), and with the dentist at PMH. Radiation wipes out some of the saliva function and increases acid in your mouth and therefore cavities. they liked what they saw, you all know I have beautiful teeth... and made two 'mouth guards for me, top and bottom. I will use these to apply a fluoride treatment to my teeth and mouth for 5 minutes every day. This will reduce the acid and therefore cavities. I will be doing this for many months/years. Because radiation increases the brittleness of the jaw it is inadvisable to pull teeth for 3/4 years and therefore they want to ensure I have 'good' teeth.

Today I was put under for an panendoscope. Dr Gilbert went in search of the primary tumor. We'll know the results in a few days. I am at home in beautiful sunshine and about to sit on the porch...might even have a glass of the red!

March 13th Update

Hello all you wonderful people.

I can't get over all the support I have received. Yesterday 2 dear friends laid out a full schedule of volunteers for driving, help, support, etc while I am being treated and beyond. I feel so grateful.

On Friday I met with Dr Zoltan Rona who is a biologically oriented Doctor. He will help me create a healthy and quicker than predicted recovery. I went to the lab today and gave 22 vials of blood that they will be analyzing for him. I am also recording all food intake for a week. The more we understand about where I am at internally and where I need to get to the better able he will be at helping me.

I also talked to someone who face a similar throat cancer 5 years ago and got some amazing tips from him and his pharmaceutical wife.

On Monday I will talk to people at a Swiss clinic, have an appointment with a hearing specialist, (establishing a base line in case my hearing is effected by treatment) and go to the hospital dentist. Can't have dental work for a few years after radiation due to bone brittleness in the jaw so things must be check out now.

On Tuesday I will undergo a panendoscopy. They put me under and then try and find the primary tumor, the original site of the cancer which they believe is at the base of my tongue or where my tonsils used to be. They would like to find the primary so they can limit the amount of radiation they give me to the primary and the second site on the side of my neck. This is not surgery. They are simple looking in my throat and taking a biopsy of the suspected sites to see if any are cancerous.

On Friday I meet with the chemo specialist. I have already meet with the radiologist and have had a mask made that will hold me in a set position for radiation. It is much bigger and whiter than any of our goalie masks!

Finally...I hope to start the 7 weeks, 35 sessions, of treatment sometime on the week of the 22nd. Everyone is trying to speed things up and move this along but there are many steps. I have been so impressed with everyone I meet at Princess Margaret. They are all kind and considerate...patients and staff alike.

This will be my longest 'update' as I had to catch you all up on what has transpired. You should know I am in good spirits and ready to face what is coming...naive...but ready! The very best to all of you.