They're everywhere, they're everywhere!

As Gail works her magic as my official spokesperson, I do find it a bit humbling... the responses, the number of people who speak fondly, kindly, charitably...

And I'm astounding by where all these friends are... Michael in Germany; Lee and Stancil in Cairo (of all places!); Dick in Thailand; the English crowd... I am astounded and humbled.

Last kick at training for a while...

Today was day two of the three day ITIL V3 course that I'm presenting... a nonstop, all day training event where I get to do most of the talking... pitching brilliant concepts in a questionably designed syllabus using an 'okay' curriculum in a time frame that is half a day too short.

Last night my throat was very tender. I grabbed some lozenges and some non-alcoholic antiseptic spray and self medicated most of the evening. One of the lozenges I used was Thayer's Slippery Elm... not bad, actually, but pretty mild and didn't have an immediate effect. I followed up with the Hall's, which seemed to offer almost immediate relief. Obviously the methodology isn't very scientific, but throughout the day today, I continued with the Hall's and my throat is no where near as raw as it was last evening when I finished.

One more half day to go, and then I'm done for the next three months at a minimum... at least that's what Doctor Williams is writing me off for... I'm truly hoping that its enough!

The Price of Admission

Years ago, when Gail had some of her first surgeries, when Gord had his little trauma, and when the girls got sick, the big thing that I tried to do was to ensure that they (and some other interesting people along the way) got teddy bears. And not just the cheapo kind! They got, as often as possible, Gunds, or some other personality bear. At one point, Gord got a Humphrey Beargart... you know the type of thing.

Well, I told Jennifer and her buddies Leisha and Lane tonight, that they weren't allowed at the hospital without a teddy bear. But not just any teddy bear. I told them that I want them to go to the Build-a-Bear Workshop and put together something that is about them and their personality; a bear that will remind me of who they are. This 'Build-a-Bear' thing is kinda cute, really. As I understand it, you chose the exterior of your bear from a selection of styles and types, and then chose the 'heart', a store helper fills the bear with stuffing, and, depending on the money you want to invest, you dress the bear. Flowers are nice, but I'm thinking that personalized teddy bears from a few close friends will mean a great deal if this damned thing gets worse...

I'm thinking of taking a quick trip to West Edmonton Mall to see the store, decide if its really appropriate, and then see how many of our friends, family and supporters I can convince to build personal, personality bears...

Next steps...

As we lead up to the surgery on the 26th of November, there are still a number of things that need to be done.

Thursday morning at 0900 I spend time with the audiologist, at which time they will take yet another baseline reading of one of my critical senses. I'm kinda looking forward to that one 'cause I've come to suspect that the sensitivity of my right ear has dropped a bit, and I'd like to know for sure.

Immediately after the audiologist (1000), I get to spend some time with Peggy Nesbitt, speech pathologist extraordinaire. She is the supervisor of the team that did the assessment last week, and apparently she likes to meet and spend some time with all of the C.O.M.P.R.U. patients. Now it is totally possible that I've keyed in the wrong name here; I can't get a Google hit on her, which is a bit confusing.

Friday morning at 10:00 AM I report to the UAH for my PAC; Pre-Admissions Clinic. I've been warned to expect 2, 3 and even 4 hours of blood work, x-rays, briefings and a meeting with the anaesthesiologist. I will walk away from there with a list of dos and don'ts, instructions for the surgery prep, and a clearer understanding of what to expect, I hope.

I will then go to the firm's offices downtown, visit with the managers who are being so good to me, and try to touch base with the members of the team that are aware of what's going on. My final acts of the working day will be to set my availability calendar to "Do not wake until Spring", turn on the 'out of office' function on Outlook and put a suitably obtuse message on my phone messaging system.

Friday night at 11:30 PM my parents are flying in from Ontario, but my older brother has decided to pick them up and keep them suitably entertained for the duration. I have no idea what I will be doing Friday night, although laying out the things that I will want at the hospital later in the week seems like a fairly obvious activity.

And no, we are not going to Jasper... I'm just a trifle concerned about the trip. I know that I'm starting to get antsy about everything, so its probably better to try another tack...

We will, all four of us, Kimberley, Jennifer and my darling Gail, check into the Met on Whyte Avenue (http://www.metterra.com/) on Saturday about noon. I'm imagining lunch at Julio's Barrio or further down at Dadio's, followed by a wander to the Dead Sea Salts store (can't remember its real name: Aveda? Not likely!), fumble through Chapters to pick up some reading materials and a crossword puzzle book and dictionary, and then on to a stop at the Paint Spot to pick up a travelling watercolour box and a smallish water colour paper sketchbook. Then naps at the hotel? Or should I make them go on to the paint-it-yourself pottery shop and get each of them to make a goofy mug?

Dinner Saturday night will be at Cul-ina's on 89th at 99th.

Sunday will start (after checkout) with brunch at my brother's with my parents. An early dinner will be hosted by John and Nancy and will include my family.

Gee, this is starting to read like a wedding weekend and not a pre-surgery set-up!

Just stuff...

Last night we took advantage of the firm's skybox at Rexall Place to watch the Oilers get soundly trounced by the Minnesota Wild. Not the best hockey I've ever watched, and the first time in ten years that I've been to a live game. I was quite surprised by the level of 'commercialization' at the game: the car and boat that were driven onto the ice between periods; the almost non-stop games and competitions (random draw to move two fans to a position immediately behind the home team bench, trivia, on-ice dash not unlike musical chairs, roulette wheel); the video shots of the crowd; shameless promotion of the souvenir stand. And what I missed most was the organ. They used music clips instead. For me, part of the magic seems to have gone away from the game...

The private box, on the other hand, was a real treat! There was food, booze, and a place where you could close the patio door so that you could carry on a decent conversation. And the conversation was brilliant. Imagine being in the middle of two ex-patriate Serbs arguing about how Canada should maintain the 'Canadianism of Canada' through immigration policy development and application. Both gentlemen are Canadian citizens. Both left Yugoslavia as it was beginning to tear itself apart. One of them actually served in the Yugoslav army and (reputedly) was part of one of the last units to withdraw from Sarajevo as the Croats (did I get that right? I still don't understand Serbs, Croats, Balkans) were rolling in. And they love Canada and what it stands for, and are desperately afraid of that the 'Balkanization' of the country is already underway.

In a nutshell... One gentleman believes that policy development and enforcement is the key. The other gentleman strongly believes that there is something inherent in the mindset of the people who are here, and who come here that provides its own limitations to the fragmentation of Canadian society.

Both gentlemen are concerned about the plan in Toronto (where? None of us are sure!) to create an all Black school... the further ghettoizing of a population. What are those fools in Toronto thinking?!?!? That's a 'John Tory' kind of move... Sure let's set up religious schools, and racially exclusive schools. How else can we foment ethnic civil war without them? For crying out fucking loud, aren't the Middle East and the Balkans example enough of what happens? And isn't it true that most of the immigrants to Canada are trying to get away from that crap?!

For all its worth!

I am finding that there is a certain amount of guilt associated with having cancer. But its not my guilt; its the guilt of those around me! It seems that people feel guilty 'cause they can't see a truly constructive way to do something to help, to make the cancer go away, to make me well. And because there are really no outward symptoms that they can grab onto and offer comfort for, they flounder. I've mentioned in a previous post or two that Gail feels particularly helpless at this point because of this very thing; how do you help when there's nothing to do but be supportive. How do you be supportive when the 'patient' is strong, mentally and physically? Its starting to seem like so many of the other folks in my world feel the same way. This feeling of impotence then morphs into a number of different states, but the one that fascinates me most is the guilt reaction.

My mother and father have determined that they will be in the city during the surgery. There isn't much that they can do other than to be here, spend time with Gail, the girls, my siblings. My marathon surgery will begin at 7 am, won't be over until 9 pm, then allowing for the recovery team and the ICU team time to get me settled, no one will be seeing me until 11 pm. And I will probably be out cold, and really scary looking. The parents then need to fly home on the Tuesday (or maybe the Wednesday?) for some tests my Dad is having. So why are they coming for the surgery, instead of waiting until I'm out of ICU, and maybe even when I get home? Is it the 'guilt thing'? They really can't help me at that point. A good friend did point out that this 'gathering' around me is more for the friends and family who do feel helpless, than it is for me... sorta like funerals. Funerals really are for those left behind, and not for the deceased... a way to focus grief, to deal with loss, to establish new and reinforce old camaraderie to help to fill the gap left by the dear departed.

I've decided to help friends and family cope with this helplessness by doing the stuff that they think I want to do. Sunday evening dinner, for instance, was almost as big as Thanksgiving, with 12 people... the previous Sunday evening dinner had 10. Gail assures me that she really wants to do these big dinners and that its good for me to see these folk and 'feel the love'. Okay...

So, I've let good friends take us to see Billy Joel. I truly enjoyed that. I don't think that I would have purchased tickets on my own.

I issued a challenge to other friends to go with me to a strip club. This past Saturday night John and Nancy, Gail and my sister Kathleen joined me at Diamonds Gentlemen's Club. I am so glad we went, for a number of reasons, not the least of which was to watch the crowd (as well as the ladies). The room was tastefully done and well laid out. The audience as a truly interesting mix of couples, single men, and single women traveling in groups, old and young. And they 'carded' everyone at the door, irregardless of how old they looked. Gail and Nancy found it quite flattering. The other observation that I'd like to make is that most of the lovely ladies that we spoke to had a slightly disconnected air to them; this was just a job. Very interesting, really.

The gist of this post, then, is that while you are still 'pre-treatment', let your friends and family do things for you... play it for all its worth! Your treatments could make you really sick later. The friends and family who can handle your pain and discomfort will step up when you need them. Some of your circle will be emotionally incapable of coping with that phase of your fight. Let them do good things for you now...

Friday was an interesting day...

I will be editing this post 'on the fly'... so check it again later; it may have changed.

To begin with, I ran into Mike N. Friday afternoon, and let him know that I expect to be able to at least 'consult' on his black tie event. He then told me that just that morning his contact at the Boyle Street Centre had called to let him know that the author of the book the event was to showcase was found dead of an apparent overdose of prescription drugs. Mike was still showing signs of disbelief. All I could think of was the waste of talent, and about how many artists are so conflicted within their lives that they have to get out of them, somehow.

The conversation with Mike was not the first thing of note in my day.

We met with Dr. Williams to discuss 'stuff' and to sign off on the surgery. At that time I asked him three questions and a point of information: do we have a date?, what about laetrile? what happens to the tooth that they will remove? and talk to us more about tanning beds.

Do we have a date? Yes. November 26, 2007, 7 am. This is weeks earlier than we expected, and while its a major bonus that we are getting the tumours dealt with sooner than later, it is going to mean some serious rejigging at the office. The Doctor then went on to discuss what to expect, and suggested quite strongly that Gail find something to do during the 15 hours I would potentially be in surgery and recovery. He suggested she go home... he will phone her when the surgery is complete. She remains adamant that she will be right there the whole time. Its also starting to look like my mother and father will be flying in as well...

What about laetrile? He has nothing against it, but would prefer that we wait until after the surgery to introduce it into my diet. He is concerned primarily about the anti-coagulation properties and the surgery.

What happens to the tooth that they will remove? Unfortunately, its a throw-away. The team has tried saving the tooth, but it has not been successful. In my case, because of the crowding of the lower incisors, the roots of two teeth would be compromised if they tried to saw between teeth. By popping one tooth out, they can get a clean, safe cut. And, once the jaw is back together, the gap may allow the other teeth a little bit of breathing room. Doctor Williams also pointed out that when I smile, people don't really see my lower teeth. The gap will not be hugely noticeable. And Gail suggested that we can always see Doctor Scott about getting a false tooth if it becomes an issue for me. Ahhhh... vanity.

Talk to us about tanning beds. Doctor Williams is not a fan of the tanning beds because of the sharp rise in melanomas that appear to be linked to indiscriminate use of the technology by the vain and the uninformed. Now while I may be vain, I certainly do not consider myself uninformed. After a few minutes of back and forth with this, the message that we took away from the discussion was about moderation and sensible use; don't do any more than one would get from an hour and a half of exposure to natural sunlight.

I am still so incredibly impressed by how fast this is all moving! My experiences with the 'system' so far are wonderful. How much of this is because of my attitude? 'Don't know for sure, but I really have so little to complain about...

I will add to this post throughout the day. Actually, no I won't... its now Monday.

Speech Pathology

Yesterday I had an appointment with the C.O.M.P.R.U. Team at the Misericordia (have ya noticed how I'm not getting anything posted on the day?). My particular therapist is Irene... a very nice young woman, fabulously blue eyes. I was expecting that I would be taught several exercises to strengthen my tongue and throat, but all they really did was get another of those mysterious 'baselines'. Now, to be fair, I know that they will use the baseline if I require therapy after the fact...

We did a number of things:

A barium swallow. This was kinda cool. They had me drink the barium, eat it in a pudding, and then chew it on a rice cracker, all the while recording the fluoroscope images. They converted the images to a mpg and played it back for me to watch. Its very interesting how your mouth/tongue does things that you are not aware of.

Photographs. It started off feeling a wee bit too much like mug shots; face on, profile quarter left, profile quarter right, profile left, profile right. It eventually moved on to shots of the oral cavity, where they pulled my lips back out of the way and took photos of my mouth and throat. At one point they even inserted a contoured mirror to make the shot. The ladies involved where relatively young, and were quite curious about the location of the tumour, spending some time trying to locate it, identify it, and understand it.

Air Pressure. Tube up each nostril and a small tube inside my cheek to determine how well my soft palate is functioning.

Speech Pathology, my term and not necessarily theirs. I was asked to read a number of passages. The first passage was done wearing a funny contraption that had a microphone positioned directly under my nose, a piece of plastic for isolation pressed tight to the upper lip, and then a microphone directly above my mouth. This was used to analyse the 'nasal' quality of my voice; do I speak through my nose. And no, I do not.
This was followed up by more reading, this time into a tape recorder. These recordings will be used to compare my current state with my future state and determine whether, or what, therapy is needed.

I will see these folks four times. This was the first time. The second time will be at one to three months, then six months, then one year from the date of surgery.

Apricot Pits

A good friend gave me a bag of apricot pits the other day. His uncle, who is battling lymphoma, is using them. Apparently they are a natural source of laetrile (did I spell that correctly?). Some practitioners, including the American FDA, classify them as some sort of poison 'cause they produce cyanide. Notice how I said that; they produce cyanide. The chemistry stuff that I've managed to winkle out of the Internet indicates that one of the compounds in the pits, when it comes into contact with one of the sugars in the cancer, combine together to make cyanide, which affects the tumour first. Some say it kills the tumour. Some say that it only 'controls' the tumour. As with all good things, if you ingest too much, the production of cyanide will be more than that needed to control the growth of the tumour, and you will poison yourself. BE CAREFUL... read, research and pay attention to what your body is telling you.

By the way, the pits taste initially like raw almonds, but they have a very bitter aftertaste... yuck. I've followed up a handful of pits with a teaspoonful of white honey; a lovely solution.

The day after the big meeting

Yesterday we met the Team... and for the first time in this process I had a few moments of despair. This overwhelming sense of gloom settled in later in the evening, after things had had time to percolate a bit. I took myself off for a walk down to Big Lake and back to think. And what I realized was creating this new and unexpected cloud was the sudden realization that, in spite of the Team, the love of my family and friends, and all of the support workers, I am really alone at the centre of this challenge.

What drove the point home was when Gail asked the Team about the prognosis. And the only answer that they would commit to was to say, in many different ways, that the Team is simply represents the technology; the final outcome, the healing, the remediation and recuperation rests with the individual.

Gail continues to be frustrated and depressed because there isn't a lot she can do at this time... she's not very good at standing on the sidelines and just being there. She elicited a promise from me to let her 'nurse' me when the treatments get rolling. That, she says, will give her a sense of purpose and let her feel that she is doing something. And as we all know, I am resistant to that sort of thing... but I will try, for her.

Jennifer and Kimberley both joined us for the meeting, and they both feel so much better about where we're going. After the meeting, we had a lovely lunch together at Cafe De Ville, and discussed a lot of the options. They seem to have this misguided impression that I will look good in one of those Peruvian beanies, and have resolved to get me one or two. Gawd, but I hate those things and think they look absolutely ridiculous out of the context of the milieu in which they were created.

We have also decided that the four of us will head to Jasper for a weekend later this month before the surgeries and treatments begin. So that's my next little project, to find a suitable place for the four of us. I'm leaning towards the Jasper Park Lodge... but if I can find a 'cabin' for four, I might do that instead.

Interesting reactions...

As I discuss and describe my two options with friends, family and acquaintances (not so much!), I'm getting a pretty consistent reaction; most folks are in favour of the radical approach.

My parents have a lot on their plates with my father's woes, so I'm not sure how focused they are, not to mention that I didn't really push it out to them in the same terms that I'm using with most other folks.

But I gotta admit that I was very surprised by the reaction from the closest Aunt, who once did nursing and now is a project manager on research projects associated with nursing. She has been the most negative, almost horrified by the thought. In some ways, she reflected my initial reactions... She is supposed to be emailing me her list of questions for me to challenge the Team with tomorrow morning.

Today I had to tell two more people.

One was the representative of a client, and I was quite taken aback by her reaction. She was really quite shaken...

The other was Mike N. from the office. He's got this great idea to help the Boyle Street Co-op raise money and also raise the firm's visibility in the community... and when we got down to the short strokes, I had to tell him that I expect to be incapacitated for all of December, January and a big chunk of February, and therefore would be unable to shephard the project to presentation. I'm very disappointed... it'll be a gas for the right folks! But the point here was to discuss his reaction. After a bit of hesitation, and taking a cue from my approach, he finally just said "It is what it is." Kinda nice sentiment. No fawning, no overt horror, no crocodile tears. I appreciate the matter-of-factness about it all.