Whew! Its been a bit of a whirlwind of a week so far... G. is getting ready for her annual trip to the UK to visit family, and I am fighting the parameters of an engagement, and not feeling like I'm getting any traction whatsoever.
What I've got is a situation where the client is unable to articulate where they're going with something, usually taking a position that makes no sense, or that contravenes something that we have already architected for them... I make suggestions and they hold firm to their murky vision. I then bring in my supervisor(s) with the hope that they can sway the client and get them back on track, and the client then completely undermines what I've said to my supers by presenting my direction as their own personal epiphanies! I really do dislike the duplicity, and the position it is repeatedly putting me in. And then one another front, it appears that I am doing 'too much' for the client... and from the wrong direction.
It also has to be said that my immediate contact within the client organization has been 'hung out to dry' on this project, with a complete lack of supervision and direction until we reach the pain points...
Damn, but I hate it!
Thursday, April 30, 2009
Friday, April 24, 2009
Getting ready for it... part II
And continuing the same thoughts, but for the surgery part of the question...
Depending on the surgical solution chosen, there are slightly different approaches to getting ready aligned along common themes.
Talk with the surgeon about what you're eating, drinking and taking as supplements to ensure that you, and he, understand the implications to your coagulation factors. If you won't be seeing him well before the surgery, put a call through to your GP. If he can't see you, talk to the nice folks at HealthLink. And if all else fails, call the Cross.
Put on weight. 'Bulking up' will serve you well for the next year. Unfortunately the diagnosis-to-surgery timelines are usually so tight in these instances (hooray! for a responsive health care system!) that getting the optimal amount added to your existing body mass can be really difficult. But try.
Get flexible, get strong. Yoga, tai chi. Weight training for your upper body. Work on the neck and shoulders, and your forearms and hands. Why?
The surgery will involve cutting into targeted muscles in your neck. Make sure the rest of them are strong to speed the healing process, and to ease the discomfort after surgery. Its amazing how heavy your head actually is. And, depending on the surgical option (radical neck dissection) they may need to move a couple of nerves out of the way. Just touching and moving 'bruises' nerves. This interference may affect the way they behave for some time. For instance, the surgical team needed to move my 'spinal accessory' nerve out of the way, and then allow it to move back into place. The challenge then created was that I lost control of my right shoulder musculature, allowing the shoulder to 'roll forward'. Good, strong shoulder muscles going in make the roll less pronounced, and should make it easier to straighten out over a shorter period of time. I still have problems with mine 16 months later; there is a numbness (area is reducing slowly, but definitely get smaller all the time), and I often need to consciously remind myself to stand up straight and square my shoulders. I should have done the weight training before the surgery. Damn.
You will need strong hands and forearms just to do things after the surgery. And, if you are going for the forearm flap option, your left arm (or whichever) needs to be in good shape. A strong hand will make things easier while the arm is splinted, and then while it is healing. The right arm and hand will need to compensate...
Aerobics; make sure the heart and lungs are in good shape. This could be as simple as starting a walking program, something that you'll want to follow up with after the surgery, as well.
Put together the hospital kit. You are going to be in there for 10 days plus. What are you going to do with your time? But be aware that you are going to have a bit of a problem focusing, so don't count on being able to read highly technical manuals. Crossword puzzles and sudoku will help you to bring your brain back... Reading of any kind is always good. I deliberately took my drawing pad and travelling watercolour kit to help me assess the impact of the shoulder issue; I can still draw/paint, though at first there was some major muscle fatigue. At this point, however, I must admit that my handwriting has seriously deteriorated, and that my signature is inconsistent. In an earlier era, I would suggest submitting several samples of your signature to your bank... just in case.
Buy pajamas (several sets) and at least one good terry cloth robe. Hanging around in hospital gowns is humiliating at best. Hanging around in your underwear is just being ornery, exhibitionist, and rude. Slippers; good slippers. And not those ones with no backing for the heel. I never owned slippers until this; I'm very glad that my wife thought to get me some.
Put together the home care kit. Lay in a good supply of Boost or Ensure. Soups, stews, chilis, etc. are going to become a short term staple in your diet. At one point I would have suggested getting your hands on a juicer, but we've discovered that it is less expensive, and more efficient to buy stuff, unless your are going to be making some really exotic blends. A good blender will serve just a s well, and better perhaps as it will be able make you 'smoothies'. By the way, we picked up one of those Magic Bullet blenders; its great for what you'll need in the short term. And remember to have the nurses set you up with home care visits from the public health nurse. Now the visiting nurse will make sure you've got the dressings (Adaptic) to deal with the forearm, and all of those good things. All you really need to cope with are things like the mucking gloves to cover the forearm flap wound when you shower and bathe, lots of good videos to watch, and books to read... and the self discipline to stop from getting hooked on the daytime 'soaps'. We also used this episode as an excuse to buy a new couch for our family room/lounging area. We deliberately bought a big couch, which we refer to as the 'cuddle couch', rather than one of those La-z-boy style chair to prevent me from becoming isolated. If you have to share a couch, you are more prone to maintaining physical contact with your partner... something which you both need. A 'special chair' just for you frames the mindset that allows you drift away from your family, pushing them out to arm's length, and encouraging them to start thinking of you in the third person.
Does this help at all?
Depending on the surgical solution chosen, there are slightly different approaches to getting ready aligned along common themes.
Talk with the surgeon about what you're eating, drinking and taking as supplements to ensure that you, and he, understand the implications to your coagulation factors. If you won't be seeing him well before the surgery, put a call through to your GP. If he can't see you, talk to the nice folks at HealthLink. And if all else fails, call the Cross.
Put on weight. 'Bulking up' will serve you well for the next year. Unfortunately the diagnosis-to-surgery timelines are usually so tight in these instances (hooray! for a responsive health care system!) that getting the optimal amount added to your existing body mass can be really difficult. But try.
Get flexible, get strong. Yoga, tai chi. Weight training for your upper body. Work on the neck and shoulders, and your forearms and hands. Why?
The surgery will involve cutting into targeted muscles in your neck. Make sure the rest of them are strong to speed the healing process, and to ease the discomfort after surgery. Its amazing how heavy your head actually is. And, depending on the surgical option (radical neck dissection) they may need to move a couple of nerves out of the way. Just touching and moving 'bruises' nerves. This interference may affect the way they behave for some time. For instance, the surgical team needed to move my 'spinal accessory' nerve out of the way, and then allow it to move back into place. The challenge then created was that I lost control of my right shoulder musculature, allowing the shoulder to 'roll forward'. Good, strong shoulder muscles going in make the roll less pronounced, and should make it easier to straighten out over a shorter period of time. I still have problems with mine 16 months later; there is a numbness (area is reducing slowly, but definitely get smaller all the time), and I often need to consciously remind myself to stand up straight and square my shoulders. I should have done the weight training before the surgery. Damn.
You will need strong hands and forearms just to do things after the surgery. And, if you are going for the forearm flap option, your left arm (or whichever) needs to be in good shape. A strong hand will make things easier while the arm is splinted, and then while it is healing. The right arm and hand will need to compensate...
Aerobics; make sure the heart and lungs are in good shape. This could be as simple as starting a walking program, something that you'll want to follow up with after the surgery, as well.
Put together the hospital kit. You are going to be in there for 10 days plus. What are you going to do with your time? But be aware that you are going to have a bit of a problem focusing, so don't count on being able to read highly technical manuals. Crossword puzzles and sudoku will help you to bring your brain back... Reading of any kind is always good. I deliberately took my drawing pad and travelling watercolour kit to help me assess the impact of the shoulder issue; I can still draw/paint, though at first there was some major muscle fatigue. At this point, however, I must admit that my handwriting has seriously deteriorated, and that my signature is inconsistent. In an earlier era, I would suggest submitting several samples of your signature to your bank... just in case.
Buy pajamas (several sets) and at least one good terry cloth robe. Hanging around in hospital gowns is humiliating at best. Hanging around in your underwear is just being ornery, exhibitionist, and rude. Slippers; good slippers. And not those ones with no backing for the heel. I never owned slippers until this; I'm very glad that my wife thought to get me some.
Put together the home care kit. Lay in a good supply of Boost or Ensure. Soups, stews, chilis, etc. are going to become a short term staple in your diet. At one point I would have suggested getting your hands on a juicer, but we've discovered that it is less expensive, and more efficient to buy stuff, unless your are going to be making some really exotic blends. A good blender will serve just a s well, and better perhaps as it will be able make you 'smoothies'. By the way, we picked up one of those Magic Bullet blenders; its great for what you'll need in the short term. And remember to have the nurses set you up with home care visits from the public health nurse. Now the visiting nurse will make sure you've got the dressings (Adaptic) to deal with the forearm, and all of those good things. All you really need to cope with are things like the mucking gloves to cover the forearm flap wound when you shower and bathe, lots of good videos to watch, and books to read... and the self discipline to stop from getting hooked on the daytime 'soaps'. We also used this episode as an excuse to buy a new couch for our family room/lounging area. We deliberately bought a big couch, which we refer to as the 'cuddle couch', rather than one of those La-z-boy style chair to prevent me from becoming isolated. If you have to share a couch, you are more prone to maintaining physical contact with your partner... something which you both need. A 'special chair' just for you frames the mindset that allows you drift away from your family, pushing them out to arm's length, and encouraging them to start thinking of you in the third person.
Does this help at all?
Getting ready for it...
Recently I've started a bit of a correspondence with someone out there who is just getting onto the treatment treadmill after having received a 'qualified' diagnosis of a stage 4 Metastatic Spindle Cell Squamous Carcinoma. I'm not entirely sure where it sits in his throat. This is not the same person who is dealing with the tumour around their thyroid...
In any event, one of the questions asked was about what one "should do to physically or mentally prepare for the quadroscopy or with the surgery when that time comes?."
Right off the bat I can give one suggestion that the surgeon would really appreciate: stop any alternative therapy or supplements that could be thinning your blood or inhibiting coagulation at least three days before the procedure. Take a hard look at the extra vitamins, the iron supplements and stuff you are taking, including the apricot pits (laetrile) and the oriental mushroom teas for what they are doing to your blood. You don't want to present a bleeding problem while you are on the table, either for the quadroscopy or the surgery.
Get flexible! The quadroscopy in particular will tax your upper body muscles. What they do, in effect, once you're under the anesthesia is to adjust your position on the table so that your head is tilted way back so that your mouth-to-throat-to-esophagus-to-stomach is as straight a line as possible to make it easier for the quadroscopy tools to slip in and out, reducing the actual trauma to the tissues... But the way they position your body puts a lot of stress on the upper torso. Imagine lying on a hard surface with your head and shoulders hanging over the edge and you'll get an idea of the effect. Lie down somewhere and try it for a moment (with someone with you to support your head!) to understand the effect on your musculature. Your chest is gonna hurt later (maybe next day). If you can do some muscle strengthening and stretching exercises for a few days prior, that would be a good thing. In my website, and elsewhere on this blog I mention 'yoga'; time to seriously think about it. Also, on the day of the procedure, do the same exercises just before they wheel you into the operating theatre, to loosen things up.
The quadroscopy itself is more scary to contemplate than it truly is. The effects you will feel are the muscle pain from the body manipulation, and possibly a sore throat... This is a diagnostic procedure for discovery, not a surgical solution. It is not intended or designed for major impact to tissues through removal, or other collateral damage.
You will go to and return from the hospital the same day. But do remember that you will be put 'under', therefore don't plan on driving yourself home at the end of the day...
Try being inquisitive with the staff; be 'chatty', friendly, maybe even funny if its a normal part of your nature. It will affect how they deal with you. A surly ass gets treated as one. The openly terrified get patronized. If you want to be treated with respect and humanity, act like you deserve it; don't demand it.
In any event, one of the questions asked was about what one "should do to physically or mentally prepare for the quadroscopy or with the surgery when that time comes?."
Right off the bat I can give one suggestion that the surgeon would really appreciate: stop any alternative therapy or supplements that could be thinning your blood or inhibiting coagulation at least three days before the procedure. Take a hard look at the extra vitamins, the iron supplements and stuff you are taking, including the apricot pits (laetrile) and the oriental mushroom teas for what they are doing to your blood. You don't want to present a bleeding problem while you are on the table, either for the quadroscopy or the surgery.
Get flexible! The quadroscopy in particular will tax your upper body muscles. What they do, in effect, once you're under the anesthesia is to adjust your position on the table so that your head is tilted way back so that your mouth-to-throat-to-esophagus-to-stomach is as straight a line as possible to make it easier for the quadroscopy tools to slip in and out, reducing the actual trauma to the tissues... But the way they position your body puts a lot of stress on the upper torso. Imagine lying on a hard surface with your head and shoulders hanging over the edge and you'll get an idea of the effect. Lie down somewhere and try it for a moment (with someone with you to support your head!) to understand the effect on your musculature. Your chest is gonna hurt later (maybe next day). If you can do some muscle strengthening and stretching exercises for a few days prior, that would be a good thing. In my website, and elsewhere on this blog I mention 'yoga'; time to seriously think about it. Also, on the day of the procedure, do the same exercises just before they wheel you into the operating theatre, to loosen things up.
The quadroscopy itself is more scary to contemplate than it truly is. The effects you will feel are the muscle pain from the body manipulation, and possibly a sore throat... This is a diagnostic procedure for discovery, not a surgical solution. It is not intended or designed for major impact to tissues through removal, or other collateral damage.
You will go to and return from the hospital the same day. But do remember that you will be put 'under', therefore don't plan on driving yourself home at the end of the day...
Try being inquisitive with the staff; be 'chatty', friendly, maybe even funny if its a normal part of your nature. It will affect how they deal with you. A surly ass gets treated as one. The openly terrified get patronized. If you want to be treated with respect and humanity, act like you deserve it; don't demand it.
Thursday, April 16, 2009
Meeting with the surgeon...
This morning I met with the surgeon who did all the work on my neck/throat to excise the oropharyngeal carcinoma in late November of 2007... about 16 months ago. The last time I saw him was in August of 2008, 8 months ago. Since then, he and his wife have had their fourth child... but this blog is about me, not him. Nice guy, though.
On we go...
The examination went well... aside from the fact that he produced that damned fibre optic scope that he seems to take great pleasure in feeding through my right nostril and down into my throat to have a look around.
The good news is that everything looks 'really good'. There isn't any bad news, only one area of concern.
I went in with a list of complaints/observations; thank goodness for G. If not for her, I would never track some of these things, let alone write them down for reference. The list today looked something like this:
On we go...
The examination went well... aside from the fact that he produced that damned fibre optic scope that he seems to take great pleasure in feeding through my right nostril and down into my throat to have a look around.
The good news is that everything looks 'really good'. There isn't any bad news, only one area of concern.
I went in with a list of complaints/observations; thank goodness for G. If not for her, I would never track some of these things, let alone write them down for reference. The list today looked something like this:
- swallow is changing; becoming more of a challenge
- reflux and heartburn; recurring way too much
- tongue issues; burning sensation, loss of taste, odd sensations
- intermittent coughing
- hiccups, burping (gas)
- hearing; much better. The guy you sent me to was wrong!
- joint pain, muscle pain/fatigue, especially in lower extremities when inactive for a time
- swollen saliva gland; is it ever going to go down?
So, the basic exam went well. He probed and prodded and stuck his fingers in my mouth to feel around. Structurally, everything looks good. There is no evidence of anything new.
The list;
1. The swallow will continue to change as I continue to heal. He recommended that I follow the advice from the speech people at iRSM (once Compru). If, in three or four months the swallow is still problematic, I should be going back to them to get a fresh view on the situation.
2. Dr. Williams prescribed prevacid to get the reflux under control. We'll give that a try for a couple of months. If that doesn't address the problem, then he may need to 'scope me (or refer me to a gastroenterologist) to find out what's going on there. He, initially, thinks that its probably just a by-product of the new swallow challenge.
3. It sounds like the tongue issues are all part and parcel of the lingual nerve repairing itself. He seems quite confident that over time it will all be back to normal. Yay!
4. Intermittent coughing. He believes that it may be part of the reflux issue. But as he was talking about all of that, he wrote up an order for a chest x-ray.
5. Hiccups, burping (gas) he put down as part of the reflux issue as well. We had another discussion about the serious hiccups I had while in hospital (vegas nerve silliness), and he introduced the name of another nerve, which I promptly forgot... and I also have forgotten part of the conversation around the hiccups. But there isn't a huge concern there...
6. I did not tell him that the guy he referred me to was 'inadequate'. I just pointed out that my hearing is back to about 90% and let it go at that.
7. We had a 'light bulb' moment around the joint/muscle pain; I could be suffering from something to do with a hypo thyroid. I have to look this one up. Apparently, when we factor in a few of the other items on the list, the joint pain can actually point to thyroid issues. This little syndrome could account for a number of the other wee challenges that I've been facing, not the least of which is fatigue and some motivational issues. He has ordered a series of blood tests...
8. The lump in my neck which is the transplanted saliva gland will not shrink much more that it has already. Damn. We could start looking into cosmetic surgery, but what's the point?
Vanity?
So, generally then, things are in good shape. We'll get the reflux contained, and investigate the thyroid.
Tuesday, April 14, 2009
...and its snowing!
There are some things that I just hate to be right about. This morning, it snowed, hard. Big, wet, heavy flakes of snow. It obscured my view of the High Level Bridge from the office window at the Terrace Building. And as I watched it falling a co-worker reminded me that I had predicted another heavy snowfall by April 15th...
There are some things that I just hate to be right about.
There are some things that I just hate to be right about.
Sunday, April 12, 2009
...and did I mention...
And have I mentioned that its been confirmed that I have TWO pregnant daughters? It appears that they are due within a month/six weeks of each other...
Spring MUST be here...
Today I got out my motorcycle, washed it, gassed it up, drove it for about an hour. Spring must be here...
...the reality of mortality creeping closer...
Well, I guess that it really can't be ignored any longer. We need better maintenance. We're starting to wear out. The warranties have expired. I'm getting older. Those around me are getting older. As we get older, we start to wear out. And yes, getting sick is just another way of wearing out...
This past year I lost an aunt... the third member of my parents' generation to move on. Two uncles, and an aunt. We start thinking about, planning about how we'll deal with it when our parents are gone. But on some level that's expected. We expect our parents to go before us. Its when our friends, our contemporaries start to falter that uncertainty sets in.
My illness made a lot of the people I know take pause. I never really understood it. In my naivete, it never occurred to me that I could have died from the cancer. Typical. I just didn't get it.
Somewhere in the time line that chronicles my illness, there was a blip that marked the heart attack of an actor we know. He lived. That was startling. (The attack, not the surviving!)
About ten days ago, another actor/musician/comedian of our acquaintance died of a heart attack at 41 years old.
We have recently learned of another actor who has been diagnosed with lung cancer; we're told that it is decidedly terminal, though we can't find anyone who can say anything about it with any technical certainty. I suppose that because we (or at least me!) has been through something similar, I want to be told about it in language with a bit of certainty. You know, one of those 'it fits in this box' kinda of discussions. I'm a little disheartened on his behalf because of the fatalism in the conversations I've read on line... people have him dead and buried, but haven't been presenting the backup information. What stage is the cancer at? What have the doctors actually said? Is there any sort of treatment protocol planned?
Okay, so where am I going with this line of thought? 'Not sure, really.
So the warranties on my generation have now expired. Okay. What now? Maintenance. Good maintenance. Regular checkups. Awareness of changes.
Hmmm... I may have to come back to this post to reframe it a bit. It's coming off a bit depressed; I'm not being depressed, just thoughtful...
This past year I lost an aunt... the third member of my parents' generation to move on. Two uncles, and an aunt. We start thinking about, planning about how we'll deal with it when our parents are gone. But on some level that's expected. We expect our parents to go before us. Its when our friends, our contemporaries start to falter that uncertainty sets in.
My illness made a lot of the people I know take pause. I never really understood it. In my naivete, it never occurred to me that I could have died from the cancer. Typical. I just didn't get it.
Somewhere in the time line that chronicles my illness, there was a blip that marked the heart attack of an actor we know. He lived. That was startling. (The attack, not the surviving!)
About ten days ago, another actor/musician/comedian of our acquaintance died of a heart attack at 41 years old.
We have recently learned of another actor who has been diagnosed with lung cancer; we're told that it is decidedly terminal, though we can't find anyone who can say anything about it with any technical certainty. I suppose that because we (or at least me!) has been through something similar, I want to be told about it in language with a bit of certainty. You know, one of those 'it fits in this box' kinda of discussions. I'm a little disheartened on his behalf because of the fatalism in the conversations I've read on line... people have him dead and buried, but haven't been presenting the backup information. What stage is the cancer at? What have the doctors actually said? Is there any sort of treatment protocol planned?
Okay, so where am I going with this line of thought? 'Not sure, really.
So the warranties on my generation have now expired. Okay. What now? Maintenance. Good maintenance. Regular checkups. Awareness of changes.
Hmmm... I may have to come back to this post to reframe it a bit. It's coming off a bit depressed; I'm not being depressed, just thoughtful...
Saturday, April 11, 2009
Happy Anniversary; Happy Birthday
Today is my parents' wedding anniversary. 56 years. Not bad in this day and age. Although I suspect that the real accomplishment is getting through the first 30...
Today is also my Dad's birthday. He's had his share of challenges over the years and managed them all fairly well with my mother's not inconsiderable help; a small brain tumour (acoustic nueroma? I never get that right!), prostate cancer, terrible problems with his teeth, an ongoing structural issue with his bladder/urethra, and three sisters...
They say that if you can get through your fifties, you are in it for the long haul.
Today is also my Dad's birthday. He's had his share of challenges over the years and managed them all fairly well with my mother's not inconsiderable help; a small brain tumour (acoustic nueroma? I never get that right!), prostate cancer, terrible problems with his teeth, an ongoing structural issue with his bladder/urethra, and three sisters...
They say that if you can get through your fifties, you are in it for the long haul.
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