Yesterday, Sunday, was a day of mostly rain... but it cleared up in the evening, and although a bit chilly, made for nice sitting on the deck. We had been to friends for dinner, and then come home to just be quiet... me, so I could wrap my head around a process document that I was to present Monday morning, and Gail so she could just be quiet and continue trying to wrap her head around where she is in life. And just as we had settled into the Adirondack chairs with fleeces and drinks, and began talking about getting into the hot tub, friends poked their heads over the fence... so we entertained the two of them and their dogs for about forty minutes. So much for the hot tub. After they continued on their wander, I gave up and went to bed. Gail stayed behind, smoking, pacing, thinking...

Gail's world has gotten so much more complicated than mine. Somewhere along the road we forgot, or didn't know, that the caregivers of the world need down time, refresh time, renew time. Where I bounced back and returned to work at the end of April, Gail needed some extra time for her, for her focus, for her recovery... but society sort of assumes that if the afflicted is ready for a return to work, so should the caregiver. It really doesn't work that way. We're paying for that oversight now... Gail is taking an extra break before our vacation, and may stay away from work until September.

I got up early this morning to prep my stuff, so that I would be sure to be on time for the process discussion. And I did arrive at least half an hour before my usual time... fought with the technology (it won; we went with a different method of presentation), and then took a brief time out for a cup of coffee. Oops! Huge mistake... it completely wiped out my saliva. I spent most of the meeting speaking, trying not to bite my tongue, and near constantly drinking water to keep my mouth moist. This is not going to work for the long term... I desperately need to find a solution to the dry mouth issues.

Its really too bad about Tiger Woods, his knee, and the stress fractures. Our trip to England in a few weeks includes time at the British Open at the Royal Birkdale. We're not sure how the tone of the tournament will change without one of the major draws. It should still be fun, given that the Royal Birkdale is the home course of Gail's sister and brother-in-law. I just hope that I'm up to it...

My beard is coming back quite nicely, albeit a bit slower than the moustache. I do hope to look like my passport photo before we fly... I suppose that I should get Gail to take a photo and publish it here.

Still no weight gain.

After playing around on my motorcycle for several weeks now, normally after work, and weekends, touring around the local industrial park with the odd excursion out to various parts of the city (like my favourite liquor store for scotch that I am beginning to taste again!), and a couple of evening runs to the government building that I am working at for the moment, I rode my motorcycle to work during rush hour, both ways, yesterday. No trauma, no problems... smooth all the way, both ways! This is, what I consider to be, a major milestone. I haven't gained any weight. I am not sure that I have replaced any muscle. But I am able to handle the heavy bike without too much trouble by 'thinking through' what it is I'm trying to do. The 'zen' approach to motorcycle riding? And speed and inertia does help... keep it moving, don't be afraid of the accelerator, and feather that clutch! I am surprised that the configuration of the seat is actually comforting for my back and shoulder; it is comfortable to ride.

I must admit that I do continue to 'drop' the damned thing in the driveway at the townhouse, usually caused by stalling 'cause I'm going too slow while turning in, afraid of crashing into the garage door. I've had to go get Gail twice to help me pick up the 500+ lb. machine. Then I did a quick 'Google' on how to pick up a motorcycle, and lo and behold, there are a number of postings on the Internet that demonstrate how one person can get a heavy motorcycle back up into the proper position. Just knowing how to do it has increased my confidence... I haven't dropped it since reading and watching the videos.

I kinda wish that I was going to be in Ontario for a chunk of this summer... I've managed to reconnect with an old friend from University who has taken on the role of director of a pipe band; I'd like to see what she's managed to accomplish. I was reading somewhere that there were highland games this past weekend in Georgetown and I'm sure that her pipe band was part of it... I would have liked to have been there. And, of course, there are other friends and family that I'd dearly love to spend some time with... Toronto, Waterloo, Waterford and Belleville... with maybe a side trip to Dresden. Next summer?

We, Gail and I, do fly off to Great Britain in July to spend some time with her family, and to attend the British Open at the Royal Birkdale. I'm also going to try to get to Port Merion in Wales, and visit at least one castle... and I'm not talking about the huge house that Andrew and Hayley are building...

The family in Britain has done the research on diet, both from the celiac perspective and from the meal-supplement-gain-some-weight view. I don't except any dietary horrors at all... in fact, all I'm worried about is that they will kill me with all of the attention!

On the health front, I do still feel very good. My beard is coming back and should have filled in by the time any customs/immigration officials try comparing my face to my passport photo.

My sleep patterns are getting much more stable.

I think that I am having a 'positive' hearing issue. My left ear, the one that I reported was crapping out completely, has decided that it will work again... and, the high pitched whine of the tinnitus in the same ear was replaced yesterday by the faintest of glockenspiels, little tiny bells being gently tinkled, distant wind chimes...

I am having trouble swallowing first thing in the mornings; the dry mouth problem is responsible, I think. That and my usual summer allergies. I'm not sure what to do about it, yet. My appetite is getting better each day, but I do catch myself avoiding eating when I think its just going to be too much trouble. Food and really thick drinks seem to be leaving a bit of debris behind on the top of the windpipe flap (gee, I just can not remember the proper name of that thing!). I had a nasty coughing fit Sunday morning during brunch at Kimberley's when a tiny piece of a gluten-free pancake got stuck and just would not be dislodged...

I will also have to admit that I'm being a bit lazy when it comes to the exercises for my shoulder, and my tongue. I've got to get on with both sets of exercises before the current limitations become permanent.

Generally, I don't have a lot to complain about, except what I am not doing. And complaining about yourself seems a bit counterproductive, doesn't it?

Take a deep breath... the hearing in my left ear has corrected itself, no thanks to any of the doctors! We still have the incessant white noise background, although the periodic high pitched, metallic whine of tinnitus is occurring with less and less regularity, with no hint of seeing the audiologist any time soon.

In fact, I'm a bit disappointed in the 'after care'. My call to Dr. Williams' office got the response that I should talk to my radiation doctor, after my radiation doctor (Dr. Jha) specifically told me to use Dr. Williams for all my concerns going forward. I am not impressed with the lack of communication and/or the hot potato approach to after care.

Even the folks at COMPRU seem a bit edgy about what to do going forward. I met with Irene and the team yesterday for a speech and swallow assessment, and will do so again in November of 2008.

They did the usual photos: exterior head shots from five different angles, and photos of what's happening in my mouth/throat. Their assessment, from a we-see-hundreds-of-these-mouths-in-a-month point of view is that my teeth are in good shape. We did the speech stuff; speaking with tubes up both nostrils and one in my cheek to assess the efficiency of my soft palate (normal!), the plate and microphone under my nose to further check how my mouth/throat is handling sounds around/through the soft palate (more normal!), and then recording spoken words, topped off with a three question 'interview' about QOL issues. Oh, ya, and then two double sided pages of questions on the same quality of life issues. (Does it take you longer to eat? Are you being socially ostracized because of the way you eat? How's your sex life?)

I brought up the fact that I am suddenly (within the last couple of weeks) having trouble swallowing... well, its more about clearing crap from the back of my throat. So off we went to do the barium swallows again. Irene was very non-committal, but I could see that 'stuff' gets hung up on the shelf behind the flap that covers the windpipe when I swallow. After a bit of prodding, Irene did suggest that it is probably a by-product of the 'dry mouth'... fluids sailed right on by, but the barium pudding and barium smeared cookie hung up, until fluids were added. I'm trying to get them to release the mpeg that they make of the fluoroscope so that I can post it here and on my website.

I should note that I've gone back to using the Akabutu's Mouthwash just in case the swallowing issues are related to oral health, like fungus or some other horrible condition.

As I write this I am eating a coconut bar (with mango juice flavouring added). Its very tasty...very nice. But the tiny bits of coconut are going to be with me all bloody day; my tongue is still not cleaning properly, and water isn't washing it down effectively. But it tastes lovely and its good for 260 calories (490 kcal).

On a more pedestrian note, I am just about ready to start using my motorcycle to commute. All that's really holding me up is the need for a way to safely carry my laptop. Well, fear has a lot to do with the delay as well... heh, heh, heh.

Damned hearing!

This morning brought a bit of a panic... I've lost most of the hearing in my left ear! And this, at first blush, seems to have been an overnight occurrence, but when I think about it, I was having trouble hearing Rhys when he was whispering, from my left, during the conference yesterday.

Hopefully its something simple like a waxy occlusion and not the beginning of a permanent problem. I have called Dr. Williams' office and asked Dianne to get me in to see the audiologist so I can get evaluated. In the short term, I'll dig out my ear syringe and see what I can with it, tonight.

The thought of going deaf, even in just one ear, very much bothers me.

On another note; I also asked Dianne to look into the implications of getting my teeth cleaned. When we started down this path, I was definitely told that no dentist other than the team dentist was to touch my teeth without a fairly comprehensive briefing... I'm sure David Scott and Cheryl will be just fine, but I don't want to 'void the warranty'!

Birthdays and Bears

For those of you who monitor such things, last week was my birthday... and a nice day it was, too. I didn't do my usual its-my-birthday-and-therefore-a-day-off, but went to work. It was a bit quiet with almost everyone on the team in meetings most of the day... and no one knew it was my birthday. There was an invitation to lunch with the engagement partner and a visitor from the USA, but it came after the original invite had been sent out with an 'oops, we missed you' attached. Another member of the team was pretty insistent that it was a mistake. It just didn't feel right, and with my problems with eating, I opted not to go.

We had dinner at Cafe de Ville, with Jenn, Amber, Kim and Duane. Pairs of shorts and a Moores' gift card were gratefully received!

The waiter remembered us from previous outings... he was great. I ordered the bouillabaisse and a lovely looking grilled salmon with tapenade. And then I couldn't eat the salmon... took the entire thing home in a doggie bag. For some reason the fish soup upset my stomach and completely killed my appetite. Embarrassing to be asking the waiter to wrap up an untouched entree... and then 'cheating' and eating a creme caramel (for the calories!).

On the Sunday, I spent the Moores' gift card as part of the purchase of a suit that fits, another pair of shorts, and two sport jackets that fit. Maybe the natty clothes will help me with my vanity issues...

Gail and I spent the Saturday at the Cross Cancer Institute at a retreat for Head and Neck Cancer Patients sponsored by the Art in Medicine team. And we carved soap stone bears. Yes, really. We made bears that actually look like bears! Kinda neat; I insisted on teddy bears during the surgical option, and then we were given the opportunity to carve soap stone bears. Coincidence? Gee, I guess bears might be my totem...

The day was quite interesting... we met others who have been through what I have. Margaret Plain's daughter-in-law, Janet, dropped in for a little while and made a concerted effort to sift through the attendees to find me and introduce herself. Wow. I want to be just like her in a year! There are others who attended who are at the year mark, and beyond, that I expect to do better than. There was a definite undercurrent of depression in the room... some frustration from the caregiver/companions... some disbelief. On one hand, I am so glad I didn't meet most of those there while I was still in treatment... they would have completely destroyed that carefully constructed mythology I had built for myself.

One lovely, courageous oriental woman who attended has been diagnosed with thyroid cancer; she and her husband were being very proactive about gathering information. Her biggest challenge will be the isolation. She will have a radioactive iodine isotope implanted, and she will have to go into quarantine, away from her family while its still in her body. We didn't dwell too much on it as she was searching for other information from me... I felt it best to be as forthcoming as possible, even though I'm really curious about her treatment program.

There was a nice, youngish couple... she, the caregiver, is an EMT. They seemed to be joyful. I wouldn't have minded meeting them earlier in the process.

There was an older, lesbian couple, three years beyond for them, and working really hard at staying positive and focused on the future... although I could see a few cracks in the veneer... but I would have enjoyed the caregiver during the treatment process.

Gail was, as usual, brilliant with everyone. If it wasn't for her, my shyness would get the better of me, and I wouldn't initiate conversation with anyone. We had to all write the 'story' of our bears; Gail took the bull by the horns and read hers out first, then goaded me into reading mine next. Ice broken, the rest of the attendees seemed so much more relaxed... she is so good at that sort of thing!

It was a good day... a very good day.