Keeping it positive...

Well, we're trying to stay positive out here, in spite of the challenges. Most of the nausea due to the chemo seems to have subsided today, but what I assume to be the radiation treatment is making most of the foods that I try totally unpalatable. The feeling of 'burn' on the back of my tongue that I was warned about seems to be starting. Damned bad timing, really, as my speech almost seems normal.

And those bloody hiccups keep coming back at odd moments. If nothing else, however, the hiccups remind me that I need to keep consuming fluids to flush the toxins out of my kidneys.

And no, I haven't resorted to that new med for the hiccups. I'm hoping that they will pass today... if they don't, then I will try them for Wednesday or Thursday.

I'm also feeling pretty trapped by the cold and the generally bad weather. I've been denied the use of the Jeep, so I'm not particularly mobile, not trusting my shoulder to support the stick-shift in the car. And I really don't know how much fun it would be riding around in a convertible in this weather anyway. The cat is doing his best to blame me for the fact that he can't go outside. I just can't bring myself to let him out into the -30s in case I fall asleep and don't notice that he's back. Daytime television still sucks.

So I read, and nap and try to find all the little drafts that are infiltrating the townhouse. I put on my iTouch and pace around the place as exercise.

Hiccups are bad. Hate 'em.

The continuing fallout from chemo therapy seems to be centering around the hiccups that keep coming back and back and back. This morning, after radiation (by the way, they cut the eyes out of the Iron Maiden for me!) we waited to see Dr. Koski and her intern to see what can/should be done about the hiccups. They have become absolutely disruptive to everything... my sleeping, my eating, my drinking. (Hell, the whole chemo thing is devastating my drinking, not just the hiccups. I can't keep up with my scotch consumption... just kidding!) What happens is that I get sudden bout of gut shaking hiccups that goes on for three or four minutes. Then, after walking about, drinking cool water, and anything else I can think of, they'll subside. If I have taken meds lately, or had anything to eat, then it becomes a waiting game; will my system sudden toss it all?

New drugs are on the way... a little anti-psychotic called 'chlorpromazine-oral'. If they were to ever offer it to you, make sure you read the fine print. Its got some potentially nasty side effects that I personally don't want... and one that I might similar to Viagra. The warnings say 'in the unlikely event that you have a painful, prolonged erection (lasting more than 4 hours), stop using this drug'. Okay... four hours would be good, right? Not so sure about the 'painful' part though.

I'm also doing a bit of research on the nerve that may be causing all of this... I'm not sure that I got it right the last time...

What a disaster! By 7 PM last night I had vomited up absolutely everything in my system and was beginning to work on all of the accumulated fluids in my system... talk about a 'cleanse'! My urinary output was virtually Nil. I had also been hiccuping almost non-stop since noon. The 'almost non-stop' was for about half an hour after vomiting, then the damned hiccups would start again. My guts were sore, I hadn't been able to keep anything down, I was becoming dehydrated. So, after a number of consultations with the Cross (including a mid afternoon call with Nicola, the day's phone triage nurse, that did get a subtle change in the anti-nausea medications) we headed off to Sturgeon Hospital.

At midnight we finally made it home, after being given 3 litres of fluid to stave off dehydration and the potential kidney damage that cisplatin can cause. They also gave me a med to stop the hiccups, which it eventually did, and a big dose of the anti-nausea meds that I hadn't been able to keep down long enough for them to work.

I got home and slept for about 10 hours. I've had my morning pills, with an Ensure (meal replacement), and am sorta waiting for any reaction. Lunch is something that I very looking forward to, not because I'm hungry, but as a way post that says I'm starting to get the cisplatin under control.

First Chemotherapy and First Radiation

Indications of the imminent approach of a tidal wave, as verified on tape and anecdotally during the Boxing Day tidal wave in Thailand several years ago, was (or is) the slow withdrawing of all the water back from the beach, in some areas as much as several kilometers away from the coastline. Once withdrawn, there is a 'pause, two, three, four' and then the water comes screaming back towards and then over the beachlines/coastlines and well inland.

At 2:00 am this morning, I had a mild hiccup which woke me. My immediate thought was that the bought of hiccups that I had while in hospital with the feeding tube in was back. Not to disturb Gail's sleep, I moved to the couch. And then it started. First, my mouth went dry, cold and clammy. Next all the of the muscles in my mouth, even those reconstructed during the surgery from my forearm flap, contracted, pulling down into my throat. Even my tongue got into the act. Ohmigod! These are my personal indicators that I was going to vomit, sorta like tidal wave indicators. I lept off the couch and ran to the ensuite, pausing to close the door adjoining the bedroom so Gail wouldn't be disturbed; tactical error. I starting spewing. I held my mouth closed, but the shear power of the spasm in my guts forced my lips open. Yuck! I caught what I could and dashed for the toilet where I unloaded the rest. Projectile vomiting. Yuck! Yuck! The whole event took about 90 seconds to completion. And then it took me about 10 minutes to clean it all up... and Gail didn't wake up. Yay.

I had another incident after trying to eat scrambled eggs about 11:30 am. No mess this time, just straight to the toilet bowl and whooooosh.

I've also had two serious bouts of hiccups in the last few hours, and one that just started moments ago, for which I'll have to get some help from Gail. What we find is working is she will rub/pinch my earlobs while I hold my breath... this somehow redirects CO2 to a specific nerve grouping which is assumed to be responsible for the hiccups. Its a nerve called the Vagas, I think. Hey, it seems to work...

So all of this is happening within the first 24 hours of my first chemotherapy course with Cisplatin. Thank goodness today in Saturday and I don't have any radiation. Now that would have been a nightmare.

The amount of vomiting has exceeded the baselines that we were given, so we called into the telephone triage centre... there's more medication on the way.

Lining it all up...

I woke this morning with my tongue and jaw in rebellion. Stiff, uncooperative, its been a chore most of the day to speak, to swallow, to clear my mouth, to swipe my teeth. That very distinctive metallic sensation (not quite a taste, remember?) is back and it is affecting what I try to eat. Lunch was meaningless. Two cookies were almost as tasty as sawdust. A glass of milk felt right. The glass of chardonnay that I just tried was putrid. My neck motion feels restricted, though I can see in the mirror that it is not.

Up early this morning to head off to the Cross for my appointments with the chemo team. At 0900 I had blood drawn at the lab. Now that is a depressing place first thing on a Monday morning... busy, very busy with patients in all phases of their therapies. I was actually a bit embarrassed to be taking up a place in line, and a chair while dealing with the questionnaire 'cause I don't feel sick, and definitely not as sick and weak as so many of them obviously did. There wasn't a lot of joy there this morning, though a couple of escorts were trying pretty hard. A brisk walk back to the Area C desk to turn in my clipboard of answered questions, and then off to the Sunshine Cafe for a cup of coffee and a rice crisp square.

Mondays must the day for the local Mennonite ladies to volunteer...

I headed back for my 1000 with Dr. Koski and her nurse, and was surprised that it wasn't Nicola from the first visit. Instead, the nurse is an aggressively positive Jean. To give you an example, we were talking about issues relating to the healing of the skin grafts, and I moaned a bit about the scar on the right side of my neck not looking as neat and tidy as the rest. She pulled herself up to her full 4' 8" and forcefully announced that they were 'life lines', and went off to find the doctor.

Dr. Koski arrived in her usual swirl of energy, plopped down in her chair and dove right into the conversation. We now have an idea of where and when we get to poison the cancer cells. Friday of this week we start. (I made a joke about ruining my weekend and Jean gave me a 'giving up one weekend so the rest of your weekends will be joyful' response when she mentioned it before the doctor came in. Like I said, aggressively positive.) She ran through the litany of the questionnaire and settled on the c. Diff. I told her that my system was functioning very well, in fact slightly better than before the surgery. She was pleased. Several minutes later, on my way out of the Cross, I was not quite so pleased. Whether its stress, or a delayed hang over from the weekend, my digestive tract betrayed me. Its been an odd afternoon since...

By the way, I just poured out that chardonnay and opened a fresh sauvignon blanc. It, too, tastes like crap. This does not bode well.

With the rest of my day, I went to physio, went to the Westin to sort out that bloody parking ticket, tried to take a nap (can't sleep!) fiddled with my website and worked on this blog. I called Krista, the yoga woman and am waiting for a call back.

Time to build the delivery roster

Tomorrow morning I head back to the Cross to start what I hope is the last round of prep before we seriously get into the therapies. At 0900 I will go to the lab, tell them the real truth about the stuff I've been putting into my body lately, allow them the samples of my precious fluids and wait for them to tell me that I'm healthy enough to get on with things. At 1000 I am scheduled for some sort of 'exam' with the Chemotherapy department; I don't have a lot of detail, but I suspect this one will be with the lovely Dr. Skoski to finalize the treatment schedule.

On Friday morning at 0936 (odd time, isn't it) we go for the first radiation therapy session. This is the one that I've been dreading. Remembering what I've said about the mask and the way the session was explained to me, I'm a bit nervous about the claustrophobia. Gail will be with me and we'll make sure to take the atavan along with us, just in case.

So, part of this week will be building the 'delivery roster' for the next seven weeks; who is going to be responsible for getting me to and from the Cross each day of therapy. I'd like to think that, with the exception of the chemo days, I can handle this myself. I may be able to do it so long as the claustrophobia doesn't get the better of me and force me to use the atavan. I really do want to be somewhat self reliant. Macho bullshit? Independence. I do appreciate what everyone is doing for me, and wants to do for me, but there are some things that I'd like to be able to do for myself. Driving back and forth to radiation therapy is one of the things. If I can do that for myself, then I can make a better case for getting back onto one of the projects at work. Obviously, because of the compromised immune system, any work I do will need to be through the wonders of technology and telecommunication...

The Glove(s) are off... sort of.

Working with information provided by the surgeon's office, as relayed to me by my Home Care nurse, today I am changing the way the forearm flap skin graft area is bandaged. The wound is essentially healed and no longer needs the layer upon layer of protection. So, no more Adaptic. We're doing away with the gauzes. Just the tubi-form, or elastic bandage will be rolled on to prevent damage to the wound site.

Yay!

So now its just a matter of applying moisturizers a couple times a day, and protecting the site from extremes of hot and cold, and not using soap directly on the wound area. And we wait for the bit of staple to work its way to the top of the scar so we can get it out. Oh, maybe I didn't mention that. As I healed and the scabbing came off, we discovered the leg of three staples still left in the arm. Two of them were easily removed, but the third has proven difficult to grab. We're waiting for it to work its way through a few more layers of skin so we can grab it without having to excavate.

Quality of Light and Quality of Life

Snow is falling this morning, in big fluffy flakes that remind me of my childhood in Ontario. Unlike most of the snow that we see here in the greater Edmonton area, the snow this morning has a feel like the softness of falling goose down. And being this far north, with the snow, the quality of light is fascinating... but it is exactly that quality of light, and the colour and texture of the sky which makes it so difficult to get a good photograph of the falling snow...

The quality of light in the kitchen this morning was not so fascinating. It was more on the annoying side as one of the florescent tubes began to flicker. With no one else around, and my generally impatient nature starting to surface again, I took the bulb out and reset it, successfully. But it took forever. The task is not that difficult, really. My shoulder complicates things. The damage to the spinal accessory nerve has not completely repaired itself, so there was a great deal of discomfort associated with the tube work.

I tried a few overhand swings, and windmilling motions with my right arm. I'm almost convinced that the motion is deteriorating, rather than getting better. Something is going wrong...

I have always enjoyed my height. I have always enjoyed not needing a ladder for some things, for being asked to get things from the top shelf at home, for being asked by strangers (or just doing it) to help get something off a store shelf. Not being able to is disquieting.

And the real question is how will this affect my sailing if I can't get the range of motion back?

The same sort of qualify of life (have you noticed that on the medical sites they abbreviate it to QOL?) issues concern me when I think about my mouth, my tongue, and my speech. I had to make a phone call this morning and recite numbers to the person on the other end. I actually got nervous about clarity. My speech still sounds, at least on occasion to me, murky, muddied. When I look at my tongue I can see a marked difference in the left side and the right side. It lists to one side producing a lisp. Maybe only I am aware, being sensitized to what's going on in my head and mouth.

I am generally very comfortable with my progress. But at rare times like this morning, I am reminded that I am not there yet.

Interestingly enough, I have stopped obsessing over the carcinoma, and have shifted most of my attention to the effects of the surgery.

Cross Cancer Institute follow ups

This entry is just to give kudos to the Cross Cancer Institute for their ongoing support.

Last night a volunteer from the Cross called to check in with me... to ask if there was anything that I needed to know, wanted to know, or generally needed.

Very comforting.

Forearm Flap Healing Well

Here are another couple of shots of my forearm skin graft over the area the surgeons took the flap of skin to rebuild the back of my throat (and part of my tongue?). As you can see, it is healing extremely well. In fact, if it weren't for the need to protect the newly healed area from being damaged by clothing and general, everyday activity, it probably doesn't need the bandages anymore. As it is in an area that is subjected to incidental contact with way too many things, we are continuing to cover it. Tight to the skin is a single layer of Adaptic, which is then covered by a doubled layer of gauze, held in place by a wrapping gauze I can't remember the name of right now, and then the tubular elastic bandage.

Building the companion website

Okay, so I've sorta hammered out a format, started to upload some basics for my oropharyngeal carcinoma website. Its a bit rough at this point, but you might want to take a quick look and let me know what changes we should be considering here...

http://members.shaw.ca/rbspecht

Ya, I know... I gotta get a cool domain name to go with it, but for right now, just take a look at the site, okay?

Status of the Mandibular Swing

I continue to exercise my jaw, mostly by talking, (and most of that is to myself when Gail is at work) to try to get back the range of motion that I had prior to the surgery in November. The term "mandibular swing" still makes me think of the cinematic 'Predator' and the way in which his jaw operates. Ugly... just plain ugly.

I can't quite get three fingers, stacked vertically, in my mouth, but its really close. The hinges of my jaw are functioning brilliantly, clicking only occasionally. In fact, sitting here right now, I can't make them click. When I open and close my mouth I can feel the pull in my neck immediately under the jaw line. There is a region along the jaw line that remains numb, or has a reduced sensation that varies in width from about 1" wide to 3" wide. It actually feels like I'm wearing a scarf cinched too tight all the time. The numbness extends in an arc up to the scalp and encircling the right ear. And no, the right ear doesn't have all the feeling, but I can hear perfectly.

The other things that I feel when I open and close my mouth are associated with the split lip and the sacrificed tooth. There is a definite 'pull' slightly right of centre. And it feels as if the jaw is still trying to do something about that missing tooth. I'm pretty sure, however, that it is more about the musculature and the floor of my mouth trying to train each other in their new duties. The less than acceptable autonomic function of the tongue isn't helping.

My 'keloid' style of healing (big, lumpy scars) is really making itself an annoyance on the inside of my lip. The cut line, or the scar tends to find its way into the gap created by the missing tooth. While I'm waiting for the radiation therapy to begin, I've let my beard grow back. I am very pleased to say that it will, eventually, totally cover the scar on my chin. But I am not particularly fond of those unkempt beards that cover the neck/throat, so I'm, once again, thinking that I need to resume the use of the vitamin E goop to help with the scars from the neck dissection.

My lips are feeling much better. True, the lower lip tends to be dry, and is really sensitive to the cold winds of winter. I do not have much, if any, control over the lower right lip. The lower left looks slumped.

This morning I find the tongue to be even better. The range of motion is improved. I can 'swipe' all of my teeth, front and back, inside and outside, with only minor discomfort in a couple of locations. There is still quite a bit of numbness on the right side of the tongue, but for the most part, I do have significantly improved control. It sounds/feels like I'm still talking with unnecessary sibilance, but I wouldn't be surprised if it was less so than a week ago. I do have to be aware of which telephone I use, here at home. One of the handsets seems to amplify the speech defects making it a little tough on the person on the other end of the phone. The more I talk, the tougher it is to maintain a consistent level of elocution.

I am constantly aware of the various sensations, or lack thereof, in and around my mouth. A lightly metallic sensation coats my mouth. Its not quite a taste. What I actually do taste appears to be slightly skewed, or lacking in intensity, but even that sense is starting to rebound.

Medical News and Health News Blog » Newer Radiation Treatment Easier For Some Throat Cancer Patients

Medical News and Health News Blog » Newer Radiation Treatment Easier For Some Throat Cancer Patients

This link will take you to an article that deals with a newer form of radiation therapy (IMRT vs CRT, Intensity Modulated Radiation Therapy vs. Conventional Radiation Therapy) that is easier on the patient. I'm going to get in touch with Dr. Jha at the Cross Cancer Institute and find out if this is what they're planning for me... some of the things that the techs have said during the prep work sorta makes me think we're headed in this direction. Remember that the one woman who did the orientation with us (was it Susan?) mentioned that it looked like I was slotted to use the newer tomography machine, rather than the usual machine that she operated. Every little bit will help, eh?

But how do you REALLY feel?

Its an interesting question, and one that I seem to be getting more and more from our close friends and family (Nancy, the big brother, my father). I seem to be able to deflect most questions about how I'm doing by pointing out that I've survived the first phase 'ahead of the curve' and am now waiting for the real challenge of radiation and chemo therapy to begin. Most people nod, understanding or appreciatively, and let it go at that. Sometimes there is a brief discussion about the implications of the treatments, but then they let it go and we get on with talking about the real business of living in this world.

But how do I really feel?

• Guilty


• Ugly, weak and damaged


• Useless


• Frustrated


• Annoyed


• Naive

Okay, so let's address these in order.

Guilty;
I wake with my gorgeous girl in the early morning, and while she struggles out of bed, showers, does her hair and makeup, I lie in bed, slipping in and out of sleep. She has a tough day ahead of her at work. Yes, she went back to work shortly after New Year's day. She is already back into the 12 hour to 14 hour day routine. I, on the other hand, get to decide if I need to get up with her. After all, what is on my agenda for the day? A shower? Wow, tough job, that one, especially with the new mucking gloves to protect the skin graft site. Get dressed? I need to figure out who I'm seeing today and what the appropriate dress code should be. Breakfast? Toast a gluten free waffle, drink a can of Ensure with Fibre, take my meds and supplements, drink a glass of juice, skim the paper. What's next? A doctor's appointment? A physio appointment? A nap? What is there to read? Should I watch television?

If I actually do get up with Gail, I half listen to that fool, Ron Wilson, on CBC Radio One in Edmonton. Most of the programming is good, except when it actually involves him; I find his manner, his condescension, his gotta-have-something-to-say, know-it-all attitude annoying. Weather and traffic? I don't have to deal with them most days. But I feel for the folks who have to hustle off to work, people like the team I work (or worked?) with. Can I, should I be making a contribution? If I can read, watch television, and enter things into this blog, isn't there more that I can be doing to contribute to our home life, or to the team in my work life?

But no, I'm supposed to be 'healing'. When does it transition from 'healing' to 'goofing off'?

And damn, what an inconvenience for all the people I interact with! Getting sick now is just so badly timed for Gail, for my workmates, for my family and friends. Plans are postponed, arrangements gone awry, commitments compromised.

Ugly, Weak and Damaged;
As I prepare for my day, I do the normal things. I shave, I brush my teeth, I shower. And as I do these simple things I am reminded throughout the process of the depth of the damage to my body. When I shave, I pass an electric razor over my still swollen neck, over areas that I still can't feel, pushing deep into the scars to get the errant hairs. I need to run my fingers over the areas to touch, to sense, to assess how well the razor has done. The swelling is uneven, lumpy and makes me look so much older and out of shape that I truly am, or was. My beard has grown over the scar on my chin, but that bit of camouflage is temporary. I will need to shave once the radiation therapy starts.

When I brush my teeth, I am reminded of the tooth they needed to take out of my smile. My tongue still does not cooperate. When I spit, the material is thick, and stringy, and my lack of control over my tongue and part of my lower lip makes it messy clearing my mouth.

When I slip out of my robe to prepare for the shower, I am still startled by the full impact of the neck dissection. There are additional scars that run from my lower right jaw down into the front of my right shoulder. I can see suture marks and some discolourations. And my shoulder, itself pivots forward. I try to haul it back into line with the left shoulder, but its tough, and doesn't want to settle into place. I can see the deterioration or slumping in the trapezoids. And it aches. (Even now, as I type this, my shoulder constantly reminds me to keep it moving, that I shouldn't be sitting still, putting this much time in on one position, one activity.)

I pull on the mucking glove to protect the skin graft on my left arm, and fumble with a roll of tape to seal the glove, invariably glancing down at the place on my left thigh that they took the skin from to rebuild the left arm. And I feel the muscles wasting in my bicep, knowing that they are losing their tone, as is so much of my musculature, even as I wash my hair, my body, and fight with the towel, drying.

The annoying tugs in my shoulder as I dress, the softening of my belly that my jeans point out, all this contributes to the sense of unease I have with my body and how I present to the world.

Useless;
I'm not supposed to lift anything. I'm not even supposed to shovel the sidewalk. We go grocery shopping, or any shopping, and Gail insists, vehemently, that she will carry everything. I had to get John to replace some burned out fluorescent tubes 'cause I can't keep my arm above my shoulder long enough to do the job. There are maintenance things that need doing that will either have to wait, or that I will have to hire someone to do for me. I have to let people rummage through my tools, putting things back where they don't belong. I didn't even get asked to help with the Christmas tree. I'm just supposed to sit and relax, or nap. I hate having to be done for, rather than doing it myself.

Frustrated;
Most of my frustration stems from the speed with which I am healing. Ya, I know that the doctors say I am ahead of the curve on this type of surgery, but I still want my taste back now, and the full functionality of my tongue now, and this damn shoulder to stop plaguing me now! I want my lower lip to stop being an irritant. I want to be in radiation and chemo therapy now, and I don't want the therapies to stop me from going to the Pink Elephant ITIL conference in Vegas during February. I want to be able to sit for hours at my computer without discomfort. I don't want to constantly need to lie down, take a nap or just get the weight off my shoulder. My various discomforts feed my own, natural procrastination. I should be reading, writing, drawing, painting, anything but feeling this overwhelming need to veg out in front of the television. And I hate that there's nothing good on daytime television!

Annoyed;
I'm sick. I hate that. I have every intention of getting better. I just hate that I'm sick to begin with. And it compounds into silly things like the fact that I've got this time away from work but I get tired too easily to do anything really constructive with it.

I don't enjoy having to eat all the time, or being prodded to eat, to fatten up, to gain weight before the chemo and radiation therapy slam my body into the mat. I can't really taste everything properly yet (although its getting so much better!) so my desire to eat isn't there either.

I'm annoyed with myself that I can't get beat the inertia and get out to exercise.

Naive;
I was very surprised by the hoopla over the 'clear margins'. I never expected anything less than that. And why wouldn't I be talking two days after surgery, with a tracheotomy tube in? I will not be that sick with the chemo, and the radiation will not cause me to have trouble swallowing. We will get this damned thing out of my system with the first pass, and it will not come back. Period. End of statement.

Getting through your fifties appears to be the challenge!

Word from the family in England is that the eldest sister-in-law has landed in hospital with some sort of abdominal complaint. I'm still waiting for details...

But a conversation we had a few days ago with friends had a theme that pointed out that if something is going to go wrong, its probably gonna happen in your fifties, otherwise you'll sail through to old age with few problems. Well, Gail's got her traumas, I've got my cancer and now my dear sister-in-law is down. I'd be very curious to see if there are any real stats on this observation.

Visiting with Irene at COMPRU

This afternoon I spent a couple of hours with Irene of the COMPRU team, essentially going through the same process/procedures that we did last November. (And I got up the nerve to ask her if those brilliant blue eyes were really hers. She does wear blue lenses over her own grey-blue eyes. Its a fabulous effect!)

We started off with the head shots: full frontal, three quarter frontal, both sides and half frontal, both sides. Then we went into another examination room where they took closeup shots of my mouth. It takes three of 'em to do it; one to hold the lip spreaders, one to photograph and one to manipulate the mirror that they use to get the top and floor of the mouth. They understood my concern about the irritation in my lower lip and used a smaller set of spreaders. Very cool, ladies!

Irene and I then went into the test area where we did the speech vs. soft palate tests and then recorded my voice for comparison. My soft palate is working brilliantly, in fact, one of the tests had the identical results to the pre-surgical assessment. As I read the lines she needed recorded, I noticed that my sibilances are still pretty weird and that I am having trouble with "p's". I'm pretty comfortable with just about everything else.

And off to do the video fluoroscope! I'm not sure how indicative the results really are. Instead of the pudding laced with barium paste, we just did the paste. The paste is exceeding easy to swallow. She and the radiologist seemed okay with it though. They also gave me a gluten-free muffin; dry, and it stuck to my teeth. She reminded me to keep working on the tongue and to try chewing on both sides of my mouth. As it is, I only chew on the left because I'm afraid of biting my tongue on the numb right side. I do need to exercise it.

I also managed to identify the plate that they put in my jaw to tie it back together after they split it for the 'mandibular swing' part of the surgery. It doesn't look like I imagined it would. We also identified a very fine wire with a tiny loop at each end that runs from the original location of the transplanted saliva glands to the new location in the front of the jaw. Apparently this wire is used by the radiologist when lining up the guns for the radiation therapy so they know what areas to avoid.

I wonder if they'll give me a copy of the video florescope to show here or on my mythical website?

Updated ForeArm Photos and other updates.

As promised, here are a couple of shots of the forearm skin graft area. Remember that this is the area from which they pulled tissue to repair the back of the throat and the back of the tongue after removing the tumour and excising extra for 'margins'. Please also note the long, thin scar running up the arm; this is where they removed the radial artery used in reconstructing/reconnecting the arteries and veins damaged during the surgery. Hmmm... I really need to use a bit more vitamin e cream on that.

By the way, the Lee Valley Tools mucking gloves work quite well. I would caution those of you with really big hands to try them on first, however. I find them a bit tight in the hand portion. Of course, you could just cut off the hand and use the sleeve section only.

Yesterday I went to the Cross Cancer Institute before physio to try to meet with Dr. Jha to discuss the radiation therapy. He was not available, but the nice young woman at the Head and Neck Clinic reception area printed out the tentative therapy schedule for me. Again, we start on January 25, 2008 and go for 31 sessions, basically Monday through Friday with holidays off, with a projected end date of March 10, 2008. Oh well, so much for being back to work on March 1, 2008. I'm going to see if there's anyway I can handle some part time stuff during that period. If not, I will simply concentrate on my L2L program, the ITIL stuff, this blog, a companion website and generally documenting my current experiences. Gail is pretty insistent that I do some painting as well, but I worry about my shoulder...

Some background reading...

In one of the Canadian Editions of Reader's Digest, in the 'Medical Breakthroughs' there is an article about portions of the surgery that I underwent. It specifically references two of the surgeons and radiation specialists on my team: Jha and Seikaly. These two were instrumental in the development of the use of forearm tissue to replace damaged tissue in the back of the throat and the tongue, and for the saliva gland transplant. I'm having trouble find a copy of the article on the Internet, but I will post the link here if I can find it. It mentions that their accomplishments were presented in August, 2006, in Chicago at a meeting of the American Head and Neck Society.

Just a hint...

There are certain day-to-day frustrations that accompany this bloody condition, some of which are directly tied to the nature of the surgery performed. But I think that maybe, just maybe I've found a solution to one of them; contact with water. It makes bathing annoying, showering very frustrating and so far, use of the hot tub, which would help with the shoulder issues, completely out of the question.

The frustration with showering and bathing is that the forearm skin graft that must be protected from shampoos and soaps, and kept reasonable dry while showering. It can be done with or without the dressing in place, however, from a practical keep-it-safe-from-infection point of view, leaving the dressing in place does make more sense. So, to keep the dressing from becoming a mushy mess I have been reduced to taking a kitchen garbage bag, putting my hand in it, and then sealing the top with one of the surgical tapes available. I tried masking tape, but when it got wet, it leaked. I tried various food wraps, but the flexing of fingers, wrist and forearm muscles loosened them sufficiently to make it a non-starter. And, both options, initially, required Gail's help to get them in place.

We even tried looking for long rubber gloves that had some tactile sense (Have you ever tried on a pair of neoprene chemical gloves? And whatever happened to professional dishwasher gloves?), with no great success until I had a brainstorm; what about Lee Valley Tools? And sure enough, they stock, online at least, something called an 'elbow-length mucking glove' for $7.95 a pair. Tomorrow morning I'm going to run out to the Edmonton Lee Valley Tools and see what they've got in stock. You should have a look at Lee Valley Tools, regardless... they carry quite a range of 'stuff' that could be useful.

With a view to trying to keep things in balance, we continued to deal with the reality of living this morning by leaping out of bed early and heading downtown to The Boardroom for a haircut. The young woman who normally does my hair decided to take a weekend to go skiing (good for her!) and left me to a slightly trashy looking woman that is, reputedly, one of the studio instructors at the local hairdressing school. I was not impressed by her, and definitely not impressed with my haircut and her ability to listen to and interpret instructions. Its really short! Much shorter than I like and too short in the places where I asked her to keep it long, to just remove some of the bulk. Definitely not a scissors-and-razor-blade kind of girl, she started in immediately with electric clippers reminiscent of the ones that my mother used on me when I was a child! And she didn't seem to be able to work with the colour variations nearly as well as the two previous hairdressers have done, although she commented that she just loves salt and pepper hair. Oh, well. We'll have to wait and see how it grows out.

Then, after flitting in and out of woman's clothing consignment stores, we ended up at Sears to buy a new refrigerator. {Insert Heavy Sigh here} On Friday we'll take deliver of a 24 cu. ft. stainless steel clad 'trio' or french door style Kenmore branded-though-built-on-a-Whirlpool-chassis unit. I suppose that I should just consider it step one in the kitchen renovations, eh?

Therapy Schedule Vague

We finally got a call from the Cross Cancer Institute on Thursday letting me know that the first day for radiation treatment will be Friday, January 25, 2008 @ 09:30. Unfortunately the call was from the lady who does the bookings (Lorne) and not from Doctor Jha, so I wasn't able to ask a lot of questions. I did ask if she couldn't get me started sooner, and she replied something to the effect that I'm lucky to have been given the January 25, 2008 date. And no, she wasn't being mean or nasty in anyway. It felt like a fairly matter-of-fact statement.

I will assume that the delay has something to do with the presence of c. Diff in my system. By the way, my body is reacting well to the new meds for the infection. I've stopped using the Immodium, although I am downing a can of Ensure with Fibre every morning, with a couple of acidophilous capsules. Everything is working quite well, and not only am I maintaining weight, but I seem to have gained a pound in the last two days. Yay! But I must admit that I was quite bad earlier this week; Swiss Chalet chicken for dinner and Wendy's chili and french fries for lunch the following day.

I haven't heard from the chemo team. I'm not sure what their response will be, whether we can expect the first chemo on the same day, or the next day, or the day before, or when... I will try to connect with the good doctor on Monday. I'm also seriously considering running down to the Cross on Monday morning to have a chat with Dr. Jha during his open clinic.

In this coming week I have 3 physio sessions scheduled and a few hours with the speech/swallow folks at COMPRU. They are the team that made that video fluoroscope of my swallowing patterns. Now this one should be interesting! I may actually be able to see how much of the base of my tongue the surgeons removed. I also may get a few more hints (or at least some reactions) for the rehabilitation of my tongue before radiation and chemo.

I was reading a couple of articles on the eMedicine website about oropharyngeal rehabilitation which has raised some concerns... and I'm developing an appreciation for the concern of the team at the U of A. The radiation treatments could make swallowing ugly, really ugly... damn. The ladies have been trying to tell me, but I'm afraid that I've been a little dense.