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