Now it gets scary... BOO!

So now we know.
So now we know more than enough.
So now we know too much.
So now we know that we don't know enough.

My surgeon actually does seem to be on top of things... and does seem to give a damn about what's going on.

Sunday afternoon, October 28, 2007, while I was hanging about at the local mall, waiting for Gail to finish her purchase of some mysterious Lancome product (mostly so she could get the free gift), Dr. Williams called on my cell phone. Respecting the fact that I was in a public place, he offered to call me back later in the afternoon, or that evening after he'd finished a emergency surgery that was on his agenda. I pushed for one bit of information before I let him go; the location of the tumour.

The primary tumour is in, or actually is my right tonsil, with probable contamination of the surrounding tissue. This changes the diagnosis to Oropharyngeal from Nasopharyngeal. Its not any easier. In fact, on some levels, this is tougher. This is THROAT CANCER. Dammit.

The Doctor called back about 8 pm, after the emergency surgery, to discuss the details. (He started the conversation with a statement about how the violence in our lives is beginning to wear him down; he'd just done a neck reconstruction on some guy who's wife had trashed his neck with a candle stick! And all I could think about was 'Miss Scarlett, in the dining room, with the candlestick'...)

When Doctor Williams called back we talked at some length about the options for treatment. While there are nuances that will be discussed with the Team on Friday morning, there are two basic options:

Option One: Conservative/Traditional Approach.
This is the one that I've begun referring to as the Melonballer Approach. What it involves is Seven Weeks of Radiation Therapy, plus three courses of Chemotherapy, followed up by basic tonsillectomy type surgery to get the tumour (and some of the surrounding tissue) and a neck dissection to get the lymph node. I've been describing the removal of the tumour by suggesting that the surgeon essentially will reach into my throat and scoop out the tonsil and some of the surrounding tissue, not unlike using a melonballer tool. Of course this is a gross simplification. Really gross, actually.

Option Two: Radical Surgery Approach.
This strategy scares me, repulses me, confuses me somewhat, but, also is beginning to make the most sense. There aren't a lot of stats on this approach, mostly anecdotal evidence from the practitioners and proponents, as well as a couple of patients. The gist of the approach is that it is a surgical option with less radiation, little to no chemo (or at least we didn't hear the Doc say chemo...wishful thinking on my part?)
So, as we heard it (which is not necessarily how it was described...trauma filters were fully engaged during our chat) what they would do is start off with a 'mandibular swing', which essentially involves breaking my jaw and 'swinging' it out of the way so that they can see what's really going on in the throat and on the back of the tongue. The image that almost immediately came to mind was the way the lower jaw on the movie/comic character "Predator" works when the beast is mad. In any event, the jaw is moved out of the way, leaving unrestricted access to the area in question. The tonsil would be taken, and, I assume, so would the second tonsil. A bigger portion of the tissue around the tumour would be taken. To make up this sudden deficit in material, a flap of tissue from one of my arms would be used to rebuild. And then, they put it all back together again, with the aid of a dental oncologist, and a plastics/reconstructist guy. The surgery is a 12 to 15 hour marathon, which, as a good friend pointed out, isn't really that important to me 'cause I'd be asleep, followed by 2 to 3 days in ICU and then 2 to 3 weeks in hospital.

The timeline that I posited to the Doctor, which he didn't dissuade me from, was that the surgery would be in the first week of December. That would put me home for the holidays, recuperating into January and early February... so I may able to slip into work for a couple of days a week starting in February, or a couple of hours a day... and, hopefully, still attend the Pink Elephant conference in Vegas the week of February 18th...

Oh well, so much for my boyish good looks. Is it possible that I can get them to give me a classic Kirk Douglas cleft in my chin when they rebuild? Or at least do something about that hint of a double chin?

I also am not entirely sure how I will deal with an extended hospital stay. Dammit, I would want a private room... I don't need the traffic from someone else's family. I don't want to have to be considerate if I'm in pain. I don't want to have to respect someone else's pain. I don't want someone else hearing me beg for meds, or ask for help to evacuate my bladder and bowels. And, if things go badly and I end up having to be fed through a tube into my stomach, I want to learn to do that one without an audience.

And besides, I might cry. I want to do my crying in private, dammit.

I spoke with friends last night, basically telling them that I don't want anyone to see me while the jaw is in the first stages of healing; it'll be swollen, ugly, and as my healing technique is keyloid (gotta check the spelling on that one!) there will be prominent scars until my beard grows back. They were quite surprised, and distressed... so I offered them a compromise. If someone can make me up a veil/bandit 'kerchief/face mask that says "Under Construction" to cover the lower half of my face, I will welcome visitors. And they agreed! Heh, heh, heh... this could be fun, actually. If I can plan my recuperation to incorporate a few little fun things like the "under construction" mask, I and those close to me may find it a bit less traumatic, and we can all approach it with less stress.

Am I good to go? Nah, not quite. Friday AM we have the meeting with the Team... that will decide things for me. So far, Mom and Dad know the rough outline, the older brother and sister-in-law have a really good understanding, the little sister is aware, though without all the gruesome details, and Gord and JoAnn have the details. I still need to connect to with the local Aunt and Uncle, the Vancouver connection, and a couple of other local friends.

And, this morning the Speech Therapist/Pathologist called to set up an appointment so she can baseline my voice, speech patterns and swallowing.

So now we know.
So now we know more than enough.
So now we know too much.
So now we know that we don't know enough.

A Week of Silence is Disconcerting...

It was one week ago today that they did the Quadroscopy. And we still don't have any results. I've called the Doctor's office a couple of times now, but nothing has come back from the Pathologist. The not knowing is becoming even more stressful for my lady, and its not doing me any good either. All kinds of scary thoughts keep running through my mind, fueled by the research which I keep doing... things like maybe its esophageal, maybe its stomach, maybe it is lung and they missed it on the CTs.

As I was typing this, the nice lady at the Doctor's office called me back, and I did manage to get the date for my introduction to the Cross Cancer Institute; Friday, November 2, 2007 @ 08:30 AM.

Nothing Yet

As the title of the post suggests, we still don't know anything new, yet. I was under the impression that the good Doctor was trying to get me set up at the Cross right away. Perhaps they are waiting on the final diagnosis as well. Hopefully we will hear something this afternoon...

Monday, again...

The thing that I most noticed this morning when I woke was the huge bruise on the back of my hand where the anaethesiologist put the intravenous for last Friday's procedure. Its easily a two inch by two inch square, and oddly enough, seems to correspond with the clear plastic piece that they overlay the intravenous sites with occasionally. Now, I'm not entirely sure whether what I am looking at is a bruise, or an allergic reaction to the patch, or a sunburn (we've been using a sunbed lately to ramp up the vitamin D) on sensitized skin. In any event, it looks a bit odd...

The other thing that I noticed this morning was that my muscles seemed to have recovered. Well, until I coughed. It still hurt like hell.

Quadroscopy; the day after the day after

Friday was the day of the Quadroscopy, that particularily invasive procedure when they knock you out, send scopes and tubes up your nose, down your throat, into your lungs and into your stomach, sampling and biopsying along the way. As far as I can tell, they also pin back your lips to make access easier; mine felt like I had been french kissing an aggressively amourous woman wearing braces. The insides of my lips were bruised, cut and generally abused. My throat was, and still is sore, especially in the upper right quadrant. Did Dr. Williams take a particularily large block of tissue from this area? He did warn me that there would be some soreness behind my tongue when he was done.

My chest and stomach muscles ache like crazy. Its difficult to bend over. I hurt a lot when I cough, and it is difficult to clear my throat. I feel a bit lazy. Well, okay, its a bit of exhaustion 'cause I'm not sleeping well.

But in spite of that, Friday was a good day. I made the nurses laugh. While waiting in the 'staging area', I talked to a guy who was having his elbow rebuilt after a shooting accident; he is a larynx cancer survivor as well. My lovely wife spent the day with me. My daughters also managed to get away from work to spend the day with us. And I got two teddy bears. In spite of the Quadroscopy, it was a good day.

They still can't find it? Bloody Hell!

Well, I really am starting to feel irresponsible; I've mislaid a very significant primary tumour.

Just kiddin', sorta.

Gail had a call tonight from our GP, Randy Naiker who has taken the time to review the MRI that was done last week. He can't (and by inference, neither can the radiologist) find the primary tumour. The sub-mandibular lymph node that is/was collecting the cancerous cells shows up quite well, but the scan doesn't show anything else.

By the way, Naiker is a fabulous GP. If you can get him to take you on, do it!

Anyway, this is getting a wee bit silly. What the hell is going on with the primary?

On Friday I will be going through the unparalleled experience of a Quadroscopy... and hopefully Dr. Williams will find something. And, we don't yet have the results of the PET scan, although he may.

In my best moments, I'd like to believe that my body has actually dealt with the damned thing, and expelled it, but forgot the take out the garbage in the lymph node.

Realistically I know that I am still in danger, and quite possibly more at risk 'cause we don't know where the site of the primary is. The location of the contaminated lymph node screams out 'neck or throat cancer', but... <>. Self diagnosis will be counter-productive at this point. I suspect that my lovely Gail is doing enough of this for both of us, which would account for her somewhat erratic behaviour. It wouldn't surprise me to find that her research list has gone beyond the neck and throat sites into the brain...

PET scan and MRI; what to expect.

I've just had an MRI and a PET scan on successive days in the ongoing diagnostics for the cancer. The two scans are strangely familiar, yet there are a couple of differences that you should be aware of. Let me just step you through my experience.

MRI: Grey Nuns Hospital, Edmonton. I was asked to strip to my knickers and socks, and was provided with the obligatory hospital pajama bottoms and wrap-around-but-tie-at-the-back smock. All my jewellery was removed. I was queried about dental work, tattoos, stents, shunts, piercings and anything metal that may have been introduced into my body. I was very surprised when I was told that there would be a contrast dye introduced intravenously during the scan. I was even more surprised when the intravenous was placed (or poked!) by an inept MRI technician, which isn't to say that he was inept as a technician but he sure left a lot to be desired as an IV tech.

I lay on the moving bed of the MRI, head towards the machine. They attached a collar to hold my neck, put headphones on me to minimize the noise of the machine, which actually slotted into the bed thereby positioning my head. They then added a head piece that had adjustable screws which further restricted the motion of my head. I had them back off the tension at one point. I was given the option of radio through the headsets, but they couldn't get the volume right, so, after some frustration from the young woman who was trying to get it to work, we went without it.

Oh, by the way, the MRI had a prism in the headpiece that allowed me to see the techs in the control room, and I was given an emergency call button to hold, and use as necessary. I did use it at one point to tell them to turn down the damned radio.

The scan itself is not one continuous scan... it is a series of two and three minute bursts. The tech that was controlling my scans kept forgetting to warn me when one was starting, and therefore I got caught needing to swallow part way through a scan, and they had to re shoot a couple. Don't MOVE when they are scanning. Ensure that they give you time to get comfortable at the very beginning. Be forceful about it. You are not going to be given an opportunity to adjust once they get started.
The machine bangs, and whirs, and thumps and hums. This thing is NOISY! You'd think that for the cost of one of these things they could develop a bloody muffler for it. Geez! Each position that they took the shots from had a slightly different sound. If I'd have realized that, I could have made a bit of a game out of trying to identify the number of different sounds it used.

The contract dye that was injected really poses no significant problems; it was just a bit of a surprise that they needed it.


PET Scan: University Hospital, Edmonton, AB. This experience started with a biggee sized glass of water with a very small amount of contrast something-or-other to coat my intestines; first confirmation that this was going to be a full body scan. The water was tepid, and had no real 'taste', but a kind of aftertaste. Not unpleasant.

After having read seven pages of disclaimer about the contrast material, which is a radioactive glucose, I was then invited to strip down to my knickers and socks. Hospital pajama bottoms, hospital smock and (bonus!) a hospital dressing gown. The only jewellery that had to go was my silver necklace and medallion.

Also for this test was the IV, handled much better by this team than the one at the Grey Nuns. The tech, Greg, then injected the radioactive material. He used a special device that shielded him from the radioactivity, regardless of how small, 'cause he is exposed to this stuff all the time; his rads exposure would be off the charts and he would be working as an orderly somewhere without this funny little, but very heavy, device.

And then I was told to relax for one hour, had the recliner I was seated in tipped back, was covered by a warm blanket, curtain pulled, lights dimmed AND THEY TOOK AWAY THE BOOK THAT I WAS READING! That one surprised me. Greg told me that the reason they don't want you reading is that the optic muscles, when they work to read, can suck up more of the radioactive glucose and therefore give a false scan.

I must admit that I fell asleep, briefly.

I must also admit that the contrast material in the drink works as a 'trigger' on my digestive system. Within 40 minutes of finishing the water, I absolutely had to use the toilet. Very liquid stool; one time only and then my system was purged of the effects.

I was walked to the PET machine. Now, I mention that because I was told that some individuals will be tranq'ed to make it easier for them to lie motionless. Ativan seems to be the drug of choice. I suspect that this team avoids the use... there was no mention of it, and none of the other patients that were in the pipeline seemed to be getting any additional consideration.

Now, where the MRI seems to be done in burst of two and three minutes, with a brief break to inject the contrast media, PET appears to be a couple of extended scans.

The first block involved lying on my back, arms above my head. Make sure you are comfortable! Its surprising how the shoulders can cramp in this position. The second block (focusing on neck and head, I assume) allowed for me to cross my arms on my stomach.

Watch your legs; some folks can't keep them still and straight, which affects the back and abdomen. I asked specifically if I could cross mine at the ankles, 'cause I know that I can relax in that position for long periods of time. It was 'approved' and I had absolutely no problem. In fact I was complimented on how still I managed to stay for the entire process...

Its all in the breathing. Focus on your breath... count 'em. One in, two out, three in, four out and so on until ten, and then start at one again. It seems to keep me relaxed, calm and, with the exception of the rising/falling chest, immobile.

The machine is virtually silent, with the exception of the brief sound of a jet engine warming up. I think that I only heard this sound twice in the entire time I was in the room, and never while I was inside the machine. For more information try http://www.radiologyinfo.org/en/info.cfm?pg=PET&bhcp=1

No emergency call button provided, but then again, the team was actively monitoring me as a person, speaking to me, checking to see if I was alright. Much better, reassuring environment than the MRI.

Now, one thing that the techs for both scans will ask you to do when they first line up the machine is to close your eyes. This is only necessary for a few moments as they pass your face under a laser alignment system. For both of my scans, I was able to keep my eyes open. I didn't, but, hey, I could have.

Questions? Leave me a comment and I'll see what I can come up...

Health Care Reaction Time: Brilliant!

Got the phone call yesterday afternoon from Maureen with the PET scan program at U of A Hospitals... unfortunately I didn't pick up the message until after 11 PM. She did connect with both Gail and I this morning (persistence; I like that in a health care professional!).

We have a PET scan scheduled for October 10, 2007. I am ecstatic! Gail is noticeably relieved.

I had another chat with one of my key supervisors today. He has spoken with the partner for Consulting in Edmonton, and reiterated that whatever I need, whenever I need it, they are there for me. He took the time to reinforce that it meant ANY TIME. He told me about an incident with his father (died from cancer) who fell in the snow and had to wait for nearly half an hour for a passer-by to help him up 'cause he didn't know who to call for help. If that ever happens to me, or if I get left at the hospital, or Gail is overwhelmed and can't drive, or anything, I am to call the office and they will deal with it. Pretty cool, eh?

It was also suggested that I warn the HR team so that it doesn't come as a complete surprise if I need serious time off sooner than later. I spoke with Erin...

I also took the time to let Mira know; I'd hate for her to hear it by rumour. I considered who else I should tell at the office. Weighing 'the burden of knowing' against other factors challenging members of the team, I have chosen to keep it to myself for just a little while longer.

Scott and Cheryl are in town today, on unrelated business. Gail has made arrangements to see them tomorrow afternoon. That decision keeps this evening free for us to pick up the necessities for Thanksgiving dinner.

And on we go...

Late this afternoon we got the call from the Doctor's office with the date for the IUA or EUA or whatever that Quadroscopy is called. October 19, 2007. Friday. That will give me a weekend to get my throat back into shape before I have to deal with anyone other than family. Good.

This also gives me the opportunity to go ahead with the ITIL V3 stuff in Calgary on the 15th, 16th and 17th. Well, that is unless they get the PET scan setup for one of those dates...

And the real bonus for the ITIL V3 session is that Farah is the lead on it... I haven't seen her since Vegas at the Pink Elephant conference. It'll be good fun. But the question is, do I tell her if she hasn't already heard? Will it throw her off her stride to know?

Gail won't be travelling with me, as she has reminded me that she must be at home on the 15th because of the election, but she might join me on the next evening. And I'll need to let Kathleen know that I'll be in Calgary. I'm sure that she'd be seriously pissed if I snuck in and out on her this time.

Dad called tonight to let us know that his PSA came up clear. Yay!!! One more for the home team.

Oops! We can't find it!

Yesterday (October 2, 2007), we met with our surgeon/oncologist for the first time. During the meeting a number of things came up, or went up, as the case may be. What went up was an endoscope up my nose so that he could have a quick look around for the tumour, which isn't showing up on the CT scan. And he couldn't see it. Basically what it means is that they can't seem to find the primary tumour easily.
The next step will to do an 'IUA', or investigation under anaesthesia (how DO you spell it?) so that they can probe deeper into the sinuses and throat, something that can't be done easily while I'm awake.
They are also trying to arrange a PET scan, something that I need to research.
We now know what we don't know: we don't know where the primary tumour is, and therefore don't know if the original diagnosis is accurate, and as a consequence don't know what the treatment protocols will be.
So the current schedule is for an IUA as soon as possible (read 2 weeks), an MRI on October 11th, and a PET scan as soon as possible.
Damn! It could be December before we get into treatment at this rate. Although, to be fair, the system is moving fairly quickly. I shouldn't complain, but its hard not to when one's life is at risk.

The Symptoms -- NasoPharyngeal Carcinoma

I think that it was my uncle who asked me if, now that I know what I know, if I can identify the symptoms that might have helped the doctors find this thing earlier. I don't really know for sure, but here are the signs that I now recognize:

• the lump in my neck (pretty damned obvious, eh? But not necessarily limited to this particular cancer.)
• my sinuses have felt 'full' for most of this spring and summer. On occasion, when I blew my nose really hard, I got a bit of bloody yuck... though this isn't necessarily an indicator. I live in a very dry climate which can account for the crap that I sometimes find in my tissues. It sometimes feels like an effort to breathe normally.
• there have been more low grade sore throats in the top of my throat. I had put this down to speaking too much with out appropriate lubrication (I am a trainer on occasion).
• my right ear has felt like it was a) full of ear wax and b) on the verge of an infection for months.
• my right ear has been secreting a oily, waxy film on occasion.
• my eyesight has gotten 'weird' and much worse... kinda fuzzy at times, with a tendency to blur/double when I go into a daydreaming stare. My reading glasses are now a necessity, and I'm seriously considering getting distance lenses as well.
• I have also been having a bit of an issue with 'gag reflex', which I'm not sure is linked, but I do intend to ask the specialist.

None of these items, with the exception of the lump on my neck, would be enough to send me running to the doctor. I have suffered from nasal allergies for most of my life... it felt a little odd in retrospect, not like I needed serious antihistamines, but just needed a pipe cleaner to scour the sinuses. Same thing with the ear; I just wanted to have it flushed, scraped or something to remove the irritation. The eyes did drive me to an optometrist who gave me reading glasses but didn't notice the other blurries, so I do put that symptom down to the cancer. The sight issues started showing up at about the same time as the lump.