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.