Off balance...

Kinda off balance today. I'm actually feeling really good on a physical level. My jaw is no where near as painful, although it still feels like part of it is packed with cotton batting. My shoulder is 'tight', but no pain. And, yes, there is some discomfort there, but it sure feels much better. I'm hitting the Imodium pretty hard to keep the c. Diff from totally disrupting my day. And of course, the c.Diff and the 'effects' do affect my appetite, so I continue to lose weight... not a good thing this close to starting radiation and chemo therapy.

But Gail isn't doing so well. One of the teeth that her orthodontist feared was cracked actually came apart, affecting the integrity of her temporary plate. We think that that spot of psoriasis we've noticed on her cheek might be another basil cell carcinoma, which, in her current state of mind, she thinks might be squamish (sp?) cell. Of course, this could simply be a bit of psoriasis, but its pretty hard to tell for me. And she knows that she will have a few hard decisions to make when she gets back to work on Wednesday. With all of this, and my cancer, she's being 'nickle and dimed' into a less than perfect mental state... and I don't quite know how to jolly her out of it. There is not a lot I can do for each item on the list, except be supportive.

I'm a little bit anxious for her and therefore feeling a bit unbalanced myself...

Feeling good this morning...

I'm feeling pretty good about things this morning... in spite of the kicking that my guts are taking from the c. Diff. Gail re-did the dressing on my 'forearm flap' and it looks really good, relatively speaking. I'm including a photo here of the site on the day the dressing first got changed. This is NOT the way it looks today. We were still in hospital. You can see the area that they took from the forearm to rebuild the back of my throat where they excavated for the tumour. You will also notice the long line where they removed the radial artery to use it to build a new artery and new vein in the back of my throat and connect to the existing blood pumping plumbing structure. I'll get a photo taken of the site as it looks today and post it as soon as I can.

Clostridium Difficile or c. Diff-- still hanging about

Early this afternoon, Dr. Koski, our chemo oncologist from the Cross, called to let me know that they have the results of the tests on my 'specimen'. And, unfortunately, it looks like I am still suffering with c.Diff. Damn. But, on the other hand, this is good to know what it is.

What it is is known as c.Diff but is really Clostridium Difficile. It is one of the bacteria that can inhabit even a healthy person's bowel, but it is not really very aggressive, unless the conditions are exactly right. The bacteria, especially the 'good' bacteria that you should have in your gut keeps this one under control. However, if you go through a course of antibiotics (see the Mayo Clinic website for a list of potential problem antibiotics), such as one does after a major surgery, it is quite possible that the c.Diff will get the upper hand because it is a bit antibiotic resistant. Hospitals are notorious places to pick it up. When the antibiotics in your systems devastate the 'good' bacteria that should exist in your gut, it gives the 'bad' bacterias a chance to take over, especially one like c.Diff.

It should also be noted that c.Diff throws spores, sorta like mushrooms and fungi do. It is totally possible that once you have gotten rid of c.Diff, it can come back to haunt you because the spores are still hanging about, somewhere... and can survive for up to 5 months. Take precautions! And when you clean, use a chlorine bleach-based cleaner to make sure you get those damn spores. I suspect that my re-infection is because of the spores on something.

There's an interesting website maintained by 'sufferers' that you might want to have a look at: http://www.cdiffsupport.com/ . It will give you a feel for what we're up against, and may help you get a understanding of the frustration of those who suffer from chronic digestive system issues (Crohn', colitis, etc.) . And, as always, take at look at the Mayo Clinic site, http://www.mayoclinic.com/ for a medical evaluation of c. difficile.

So, on one hand, I got my wish; there is a pill. Tomorrow I'll start on flagyll, again. The bad thing is that there will be no alcohol for the duration of the treatment as the reaction between flagyll and alcohol is similar in nature to antibuse. Well, maybe not being able to drink isn't such a bad thing, although I was kinda counting on the extra calories to help me get back on track with my weight. I guess I'll hafta substitute healthy stuff like juices, smoothies, water, iced teas instead. But I should also admit that I use that glass of Scotch before bed as a sleeping aid. Now we'll see if my sleep patterns become disrupted, again.

With Christmas 2007 behind us (and what a lovely Christmas Day it was!) we're back to planning the next step in the campaign against the cancer. This afternoon we spent time in a chemotherapy education session at the Cross Cancer Institute with "Nurse Elizabeth".

One of the things that we noticed was the complete lack of ostentation. There is no money, no privilege on display there.

There was an immaculately dressed woman at the centre of an adult family of five others, and quite honestly, until she pulled out one of the letters/agendas, I was guessing that it was one of the family members who was ill; she seems to be the most centred, the calmest of the bunch.

There was a couple in their early thirties who are still devastated by the diagnosis of her cancer. They got the news just before Christmas and are having a lot of trouble dealing with it. I didn't find out what type of cancer she has. She is withdrawn, he is sullen and bitter. They've got a tough fight ahead... just to hold on to each other.

And the most scary individual there was a man in his late 50's, early 60's with all the same scars as I have, including the forearm graft but they are old scars; he is totally healed up. What makes him scary is that he has a new tracheotomy (still wearing the tube in his throat) and a new graft spot on his upper arm. Now, I may be reaching, but the fact that he and his wife were attending the chemo education session says to me that this is his first contact with chemo. And, if you follow the thought through to its logical conclusion, the reason this would be his first contact with chemo is because he either refused it, or wasn't offered it during his first go 'round.

Yep, I gotta pay attention, follow through. I don't want to be going through any of this again!

Just as a side note, my digestive system is wreaking havoc, again. This is not as pervasive as the bout with c.Diff, but something is definitely askew. I'm losing too much weight, and I'm spending way too much time in the bathroom. I sure don't need any stool softeners! This morning I collected a specimen for the lab hoping that they will say "oh hey, just take this little pill and it will all be better". I'm afraid, however, that I'm starting to suffer from IBS (irritable bowel syndrome) as a manifestation of the panic I'm holding at bay.

Trying to understand the nature of despair...

I received another three teddy bears by mail late yesterday. First was a bear from our dear friend Elaine in Ontario wearing the colours and t-shirt of the college that she works for. Second was from my mother-in-law and one of the sisters-in-law; its a British Open 2008 bear, complete with a tiny sweater with the logos knit right into it! What a fabulous bear! We intend to go to the Open this July, and the bear is just one more reminder. Bear number three comes to us from Scott and Cheryl in Vancouver, and it is a darling! Around its neck is a group of photos with a cover page titled "Bruce's Dragonsmoke Bear". The photos are of 'Dragonsmoke', a 51' sailboat lying in Nanaimo that I've been coveting. It was berthed at Granville Island, and the last time we were there we couldn't find anyone at the brokers who would let us on/in her to have a closer look. But the ever resourceful Scott and Cheryl tracked down the owner (after they couldn't find it in Granville) and got him to take some additional photos for them to include with the bear. And apparently the price has dropped again...

Which brings me to the 'despair' part of this post.

I realize that we must make some pretty significant decisions in the months to come. For instance, do we go after the boat or do we take advantage of the sub-prime mortgage crisis in the States and buy real estate in Phoenix ( boat valued at 150,000 vs. a three bedroom bungalow valued at 150,000). Does it make more sense to have the boat on our coast and aim to move there, or plan to stay here and do the snowbird thing back and forth to the desert? And do we have the money for either option? Who will lend the money to us? Does my cancer impact our credit rating? Will we be able to sustain benefits packages now that I've got cancer? What happens when we go to renew the current mortgage, which comes up for renewal in July of 2008?

It strikes me that at 52, I am not in the best position to get the most desirable outcomes to all of these questions without some substantive effort... if I'm willing to work at it. Gail and I need some 'resolution' to our retirement questions. So, its time for some real research and a new plan.

But it occurs to me that all of this could be overwhelming for some people, if they were in our position. The sheer weight of the decisions that are now predicated on that miserable word, 'cancer', and how that could affect everything that they have put together for their futures, just like us. Despair touched me briefly this morning. I may not ever get a boat. We may never be able to arrange for the hot spot retirement location. My benefits may get cancelled in the future and I may never be able to insure a loan again. Ya, well, too fucking bad. I'm still gonna try for it all and I have every confidence that we will get something close to what we dream about... and yes, it will probably require a lot of hard work, and innovative thinking to pull a lot of it off, but goddammit, I intend to try!

My momentary brush with despair this morning does put what other folks go through in perspective. And I suddenly understand why some people simply lie down to die after the diagnosis is presented at a certain age. I'm looking at another 40 years to go, minimum. The plan for the next 40 years is not properly laid down yet; it was supposed to be finalized in the next year, according to our 'life plan'. Each step in the next 40 could be coloured with uncertainty by that fucking word, 'cancer'. It is, potentially, going to be a hard, uphill fight. How much easier it would be to not engage, to not start the fight, to simply go through the motions of the cancer treatments, to let the cancer make the decisions, to start sleepwalking through what remains of the life that the cancer has attacked.

Damn! I get it. I understand why some people die from cancer. But that is definitely NOT me... I am not finished yet.

Now what!?

Yesterday we spent the day either with G.'s dentist looking into how to solve her ongoing 'bridge' problem, or at the Cross Cancer Institute getting ready for the radiation treatments. As this blog is supposed to be about me, I'll leave the dental woes for G. to communicate in her own way.

Thursday at the Cross was about getting ready for the radiation treatments, with three activities planned; 1. make the mould for the head mask, 2. get a CT Scan done to help with the final stages of the treatment planning, and 3. have a one-on-one with a radiation therapist to discuss any issues. And yes, because of the mould making, I had to shave my beard and mustache off again. There are moments when I find the loss of my beard, a constant companion since I was 16, to be the most difficult part of all the things that I am going through. I'm beginning to understand the trauma that some women feel when they lose their hair to chemo... And I must admit that my own vanity extends to the still-swollen neck... I feel like a bullfrog on occasion.

1. Making the Head Piece: The mould making process was not what we had been led to believe. Where we had been told (via an educational video) that they would do a plaster cast of the head, face and shoulders, from which they would pull a vacuum formed 'life mask', what actually happened is that they cut directly to making the mask. There has been a change in the technology used, but the orientation videos haven't been updated yet.

I was taken into a room by three staff members. One of the staffers talked me through the process, with some visual aids. The final mask is a plastic mesh (1/4 inch diamond shaped holes throughout and the material is about an 1/8 or even 1/16 of an inch thick) that is first soaked in hot water to make it very pliable. The patient lays down on a table with a head support that holds your head, neck and shoulders in position. If you've seen that lovely movie about geisha, there is at least one scene where the woman goes to sleep with a shaped wooded brace under her head and neck to protect her hairdo... the support is similar in concept. They do have a small selection of supports, so don't hesitate to ask to try one that might make you more comfortable. (One of the things that they will not allow you to do is to cross your legs at the ankles, even though this often makes people more comfortable, more relaxed with what is going on. Apparently crossing your legs puts a subtle twist into your pelvis that can be reflected in the position of the neck and shoulders.) Once the patient is positioned, the now warm, damp and pliable mesh is draped carefully over your head, face, neck and shoulders, and, using special little channels already affixed to the mesh, the material is locked into the table. Yours eyes must be closed. Two of the team then work quickly smoothing the mask to fit as tightly as possible. Don't move! Don't open your mouth, shift position or do anything else that will force them to start again. They will run their fingers over your eyes, into your ears, and generally everywhere that the mesh material contacts the body. And then you wait... for 6 minutes, while the material sets up. The staff will try to keep you as calm as possible by chatting to you, trying to include you in their conversation. But remember, you are not supposed to move.

I must admit that their chatter prevented me from getting 'into the groove' of relaxing using the yoga breathing techniques I've been practicing, so I was, by the end of it, feeling a bit anxious.

2. The CT Scan for planning use: Winston and Christine took me through this step in the preparation. These two are very good, supportive, lovely technicians. Essentially what we did was to put me on the CT table, and then fit the mask just made onto my head, and lock it into the table. They made measurements and added reference points to the mask for the future treatments and then followed it up with an actual CT Scan to be used by the targeting computers in the radiation treatment machinery. They, Winston and Christine, tried to keep me occupied, but I did start to feel claustrophobic. My eyes are closed. I am fastened to a table and can not move, and have no idea how to release myself if I need to. Being on the CT table, I am also moved in and out of the machine, in and out of light. So, yes, I did indeed start to get anxious. And I just couldn't get the breathing rhythms going, again.

After we'd finished, Christine sat on the table with me to discuss the experience. I was lone in the machine for about 5 minutes. The actual radiation session will be about 20 minutes. I'm not going to enjoy this. I am not confident that I can do this easily. I asked her if we could cut out the eyes on the mask, and she told me that would be up to the therapists running the machines. She did make jokes about taking the mask home after all the treatments were complete and cutting it into little, tiny pieces and disposing of it in any sadistic manner I might choose...

They also suggested that, if I do encounter claustrophobic problems, my doctor should be able to prescribe something to help relax me. I noted that I already have a prescription for Atavan... they suggested that I bring it to the first session, and if necessary, stop the process, take a pill and then proceed.

Winston provided us with a phone number to call if our appointments haven't been set up by the 2nd of January.

3. The Education Component: Susan was the next person we saw. Susan is one of the radiation therapists who is on rotation this week to do education. It sounds like they all have to do this rotation to maintain some level of contact with the patients. Susan gave us some brochures, talked us through part of the process and let us know that we would be using the newer tomography machine for treatment. She seemed a little surprised that no schedule has been set yet; no duration, no dosage. She was even a bit surprised that we hadn't been told that we would have the newer tomography machine.

As much as possible, they will try to give us the appointments during the time of day that makes the most sense to us. We chose mornings, but we'll have to wait and see. It was also rather interesting that she left me with the impression that I might be able to drive myself there and back again and not necessarily depend on others for the transport. Of course that won't be happening if I need to rely on the Atavan to make it through the sessions.

When It Rains...

In a previous post, I mentioned some of the Demons that come, unbidden, to torment as you try to work through the implications of the cancer and its treatment. Well, in my case the number of things that are stacking up, waiting in the wings for their moment to irritate us seems to be getting downright silly.

On Monday, Gail was off to the oral surgeon to start work on her implants to rebuild/replace her deteriorating teeth. While removing a broken tooth, the surgeon discovered a second broken tooth that had to be removed. They then built a temporary plate so she could make it through Christmas. And then he quietly announced that her jaw isn't thick enough to take the posts necessary for the completion of the full procedure, so he will be sending her off to a specialist for bone grafts.

Gail seems to have had enough. I suspect that she is going to settle for a plate and forget about the Cadillac version. Too many surgeries in her lifetime; she doesn't want anymore.

So, Monday night, there we were, both struggling with our dinners, and we began to laugh... a preview of us at 80!

We have also had to have two visits from the appliance repair guy that we use. First, the refrigerator is on its last legs and needs replacing very soon. And then this morning the wiring on the bake element in the wall oven had to be repaired. The oven is still serviceable, but it is getting on in age and will need replacing in the next couple of years. Of course the worst thing about the experience is that I couldn't help the guy move the appliances; poor Gail ended up having to dig down deep to find her inner 'butch' and help manipulate the gear.

So, what's next?

Presenting my experiences to the world....

I'm wrestling with the best way to present my experience with oropharyngeal carcinoma to those who may get some benefit from it. What would be the best vehicle? This blog? I'm not so sure any more. A properly configured website? Maybe. A book? Well, yes, but later when its all done. But as an active record, I suspect that building and maintaining a website in concert with this blog would be better than the simple random ramblings from the blog. For instance, with a website, I can go back and tell the story of the surgery in a presentational manner that will be easier to follow than jumping around in this blog.

Opinions?

I caught myself doing something odd tonight; pushing people who care for me away to arm's length. I'm not entirely sure where this is coming from, although I do know that I am pulling more and more into myself as I ready, intellectually, for the next phase of my treatments. Is this why I'm having a bit of difficultly relating to folks? Or am I just tired of talking about the surgery? the surgery is only one visible aspect of what needs to be done here. Sure, its a great catastrophic view of nature of the cancer, but it is only one part of the war, a major battle won, but only one part of the overall strategy. The people we dined with tonight were family, and well informed. In spite of all their ohhhhs and ahhhs over how well I'm healing from the surgery, I know that they understand what is yet to come. I suspect that they understand it better than I do and that may be why they dwell on the current success; the next phase isn't going to be so easy, so clear cut, progress so visible. I dread the radiation and the chemo. I will end up being even more dependant on the charity of others to get me to and from the treatments, to make sure I eat, to help me when I'm sick. This I find to be a disheartening prospect.

Okay, sure, I'm tired right now, and that may account for the maudlin attitude. Dealing with the pain and related frustration from my shoulder and my jaw is a bit draining. Allowing myself to be done for, instead of handling the doing myself is beginning to weigh on me. Today, Gail and I went to try to do a bit of Christmas shopping... and I spoiled it by wearing the wrong coat (too heavy!) and not paying attention to my body until it was too late. And, stupidly, I left the house without any pain meds! With the pain and discomfort, I retreat. I'm not 'in the moment' with her, and I know that it causes her major concerns. And it is starting to seriously concern me as well. She is the last person that I should be pulling away from, withholding from... but I can see myself doing it. I'm being hyper critical, much tougher on her than anyone deserves, especially her. I need to stop this. And yes, it hurts to hug her, but its what she needs and wants from me... so why can't I give her that? Pain? Hurt? Embarrassment that I've gotten myself, us, into this situation? The meds?

Damn, but I gotta get myself back on track here! I've got to get past the shoulder and onto the next phase. I've also gotta get the cuddly part of me back in line... and make sure that Gail understands how much I love her.

There will be Demons...

There will be Demons that will need to be confronted... I hope that you will have the upper hand with them, deciding when and where the battlefields will be, and not allowing them to take control of the rhythm of confrontation.

Tonight, or rather, early this morning, I have awoken to mild indigestion, a known precursor to a bout with reflux. Its 1:10 am. I had been asleep for about an hour and a half. I woke, recognized the signs, preemptively took a Zantac to deal with the problem. There were, almost immediately, a mild couple of hiccups which stirred fears of the days of hiccups in hospital. They subsided almost as quickly as they appeared. I returned to bed, where my darling lay sleeping, breathing heavily, oddly rhythmically, in a cartoonish sort of way. A word escapes her dreams, a phrase.. and that's when the Demons decided that I needed to be reminded that they are still there to be dealt with.

There are the issues of immediacy, like the maintenance on the house that didn't get done before I went into hospital. Weather-stripping on the front door needs replacing. The 'bake' burner on the oven isn't working properly as of today. What are we going to do about the refrigerator that has chosen now to give us grief? How on earth am I going to get the Christmas shopping done in the next week?

My jaw still hurts and isn't functioning the way I want it to be. My speech feels slurred, clumsy, though everyone I speak to tells me that I sound as clear and resonate as before the surgery. My saliva is thick, and in abundance. My right shoulder aches. My scalp tingles on the right side of my head. My digestive tact is still a shambles from the c.Diff I picked up in hospital. Have I made the right decisions about my treatment? Was the radical surgery really the correct approach? Would we have been in a better position to deal with the day-to-day pre-Christmas challenges if I had settled for the conservative approach?

And then the rest of the Demons put in their two cents worth. How am I going to thank all the people who have shown us so many kindnesses? How do I address the people who have come out of the fog of my past to send their good wishes? I am so embarrassed that I lost touch with so many of them, how do I reconnect? And the memories, how do I stop the memories from flooding in? The good times and the bad times we shared... the times that I was a jerk, the times that I needed more from them but couldn't ask, the times that they needed more from me, but I couldn't recognize it... all these need to be reconciled.

Do the ad hoc hauntings by these and other Demons point to a tenuous mortality? Or is this more about self realization? Are the Demons trying to suggest that I should be using this time to grow into something more than I am?

The Value of Prayer...

There have been studies of 'studies' that have shown that there can be a small difference in the results of an experiment involving subatomic particles that are observed directly by a human being, vs. the results being monitored mechanically and analysed after the fact. In theory, what this sort of demonstrates is that the human will can affect or help shape reality at the subatomic level. This goes forward to helping to define what quantum physics is and does in the universe. One of the major tenants of quantum physics (unless I have completely misunderstood it) is that every point in the universe is connected to every other point regardless of distance. If you think about the Gaea theory and the 'butterfly effect' you may sort of get the idea on a more restricted level; if a butterfly in the Brazilian jungle flaps its wings in distress, the long term effect/consequence is a snow storm in Edmonton.

So, where am I going with this? Be patient...

I don't have a lot of respect for most of the organized religions of the world, and the horrors committed in the name of God. I have discovered that I have far less respect for Christian and Islamic churches than most, with Judaism coming up in third place. I don't understand why God does His/Her job the way He/She does, and I am highly offended by the way in which the various churches use it to their advantage. Interpreting the 'Word of God'... what a scam.

But somewhere within all of the silliness and the deception and self-serving behaviours of the churches, they do help the individual who takes so much on 'faith' to focus their thoughts into the very useful commodity of 'prayer'.

Prayer, meditation, chanting circles and similar locuses that focus the unlimited power of human thought and imagination ties back into the earlier vague discussion about quantum physics and the interconnectedness of everything with everything else.

And then on to my central thought... that the prayers of those around me, for me, actually do make a difference in my recovery. By focusing your thoughts on me, for me, to me, at me, you've set up a ripple in the subatomic, in whatever fabric holds the universe together that ultimately helps me to find my place in universe, that holds me, feeds me, heals me. And for that, I thank you all.

First Run at Physio

And when the dust settles on the surgery, it seems as if there is always some sort of impact on the spinal accessory nerve. Which is not to say that there aren't other areas that will require some sort of physical remediation. For instance, in my case, there is a fairly large (4 cm x 5cm) area on my left forearm that was used to create the 'flap' that replaced the tissue removed from the back of my throat. This area was then replaced by a graft from my thigh. The 'therapy' necessary is to ensure that full articulation of the wrist and fingers is maintained. But today's visit to physio was focused on the spinal accessory nerve.

As you may or may not know, the spinal accessory nerve controls the muscles in the shoulder. For me, the pain is quite extreme at times. I am self medicating with Tylenol 3s, but have begun toying with ibuprofen as an alternative. It seems to be almost adequate for the type of pain that I am experiencing.

All that really happened today was that the therapist (Brad) did an assessment... sort of like poking his fingers into the Pillsbury dough boy on both sides of the shoulders to assess reactions. I remained on my back throughout the main portion of this exam, with only a small time on my front so he could really feel what was going on. Through this rather passive approach, he managed to identify those areas of my shoulder that remain numb, and which areas are already starting to bounce back. He also managed to discover how much my left side is compensating for the damage to the right side.

He did suggest that I not sit too much, as it promotes 'rolling' of the damaged shoulder forward. He suggests walking, being very conscious of my posture and being in an almost constant state of movement; get up and move about every 10 minutes.

Brad is evaluating the surgical reports and will build the proper treatment for me based on that.

When did the art of living become so complex that we forgot how?

We, in the urban centres, have forgotten how to grow our own wholesome, righteous food.
We have forgotten how to shop for the food we don't grow for ourselves.
We have forgotten how to prepare the foods, how to cook the foods, how to dispose of the leftovers and waste.

Where did the cancer come from? I stopped smoking 17 years ago. And yet people who smoked when I did and continued do not have any problems today. I don't drink that much; people who drink far more have no problems, yet.

The source has to be something more insidious... something in my world, my environment, that's been skulking around for some time, and finally decided to make its presence known. But what the hell is it?

Healthcare System Complaints? Got none again today...

Shortly after 8:30 pm mountain time last evening, my surgeon, Dr. David Williams called to let me know what was happening with the pathology on the samples taken during the surgery on the 26th of November. Now, think about this. At 8:30 pm a surgeon calls a patient. This call is made at the end of what was probably a very busy day. In fact, knowing what we do about David, this call was probably made at the end of another surgery... Norman Cousins once said: "Nothing is more essential in the treatment of serious disease than the liberation of the patient from panic and forboding." This guy, this David Williams, he gets it.

Now, the substance of the call last night was this:
Of the 41 lymph nodes removed from the right side of my neck during the neck dissection only one was contaminated. And that one was the secondary tumour that sent me to the doctors in the first place. It was, when removed, 4 cm x 4 cm in size. And, of the samplings taken from the left side of the neck, none of them was contaminated. Tissue removed from the area surrounding the primary tumour, no additional cancerous material was found. In short, it looks like THEY GOT IT ALL!

We will, of course, still submit to the radiation and chemo therapy treatments that will be designed based on this new information.

There is a lot of relief around here. I, personally, have never doubted that the team would get it... this may be a silly attitude to take, but it just never occurred to me that they wouldn't.

Moving onwards, again

Okay, I will admit that I am still trying to organize my thoughts, trying to figure out how to present the observations and feelings I have about my recent surgeries, so this blog is a bit lame at the moment. There are two thoughts that I will share right now, that I will put into some sort of context in a day or so once I work out a structure for the blog.

Thought One: When you first wake up in ICU after having a tracheotomy done, you feel like you can't breathe... which is actually not true. For me, my sinuses are usually so full of crap that I can feel the 'resistance' of taking each breath. Each movement of air through my sinuses is felt, heard (internally) and instinctively understood that a breath has been taken. Once trach'd, I couldn't feel the resistance. I woke up in ICU and because of the lack of resistance and sensation thought that I couldn't 'take a breath'... and panicked. There's nothing to panic about; they've got you. It took me about fifteen minutes to intellectualize it and get my panic under control. And for some reason, David, the ICU nurse, told Gail that they let me do my own breathing faster than they do most people in ICU; they took me off the ventilator faster, letting me breathe for myself, but left me with the oxygen and the humidity. So basically, it seems that its about 'control' issues. I'm not entirely sure how to show you and assure you, but somehow you need to understand how you breathe, and be able to intelluctualize the tracheotomy. Just remember: don't panic. The staff is there to help you, and they will NOT let you suffocate.

Thought Two: Don't discount the effects of the surgery on your shoulder. My right shoulder is just killing me! And its largely 'cause of the surgery and the damage/changes/bruising done to the spinal accessory nerves during the neck dissection. Get into physio as soon as possible...

December 7, 2007: Home again, home again, jiggety, jig...

I'm pretty sure that the date stamp on this post will show as December 8, 2007, however I am writing it at 2:00 am, mostly 'cause I just can't sleep. So I'm counting this as December 7, 2007.

The big news is that I am actually writing this from my home! Yes, my home!

I realize that there is a bit of a disconnect here, with my previous post being November 20, 2007. I did manage to complete or somehow hand off or close off the stuff that needed doing;

• paperwork at the office,



• finished up the training that I desperately wanted to present,



• got all the letters and documentation needed to handle my short term leave,



• attended the two preparatory clinics (audio/speech and the pre-admission clinics), had a wonderful day with our daughters strolling up and down Whyte Avenue, followed by a delightful dinner at Cul ina, and overnighting at the Met



• brunch with my mother and father, uncle, aunt, older brother and sister-in-law



• was treated to a wonderful dinner by John and Nancy, who not only hosted Gail and I, but my family and the girls. For this I will be eternally grateful.

and still made it to the hospital on time for my 5:30 AM checkin and prep for surgery.

And now, I have been discharged from hospital and am sitting at my home office workstation, banging on these keys, to share the news that the hospital and the doctors have determined that I have recovered sufficiently from my surgery to be allowed to go home.

For anyone keeping track, the timeline looks like this:
Day One: November 26, 2007: Surgery; approximately 12 hours (I need to verify that one and get back to you on it).
Day Two: November 27, 2007: ICU; measured from end of surgery to transfer to ward, it looks like about 24 hours.
Day Three through Day Eleven; November 28, 2007 through December 6, 2007: on the ward. Details to follow in another post.
Day Twelve: December 7, 2007: Home; actually sitting in my pajamas, drinking a juice from my fridge by 1:30 PM.

Not bad, eh? Especially not bad to go from a neck dissection and a radical mandibular resection (mandibular swing), have the tumour excised, forearm flap built, installed and the skin grafts coped with, salivaria gland transplants, the doppler wiring having come and gone, with an amazingly small tracheal scaring and such to walking out of the hospital, eating 'diced' foods (tonight Gail cooked me an amazing piece of fresh salmon, with mashed potatoes and chopped fresh green beans!), speaking with only a hint of the 'cotton ball mouth' effect. In the coming days I will be detailing the sequences, with photo backup as available. Gail has been sweet enough to take photos specifically for this blog and other presentation formats that I want to work with.

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.

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...