I had my monthly checkup with my surgeon today. There was something I had to tell him to get his opinion.
I found a water swallow test on the Net at a medical web site that's been very good. I trust info there. The test is simple. Drink some water. Did you cough? No - you pass. Yes - you fail. Then I applied something I remember from my one appointment with my speech therapist: Had I ever tried eating or drinking with my head in a different position - like pointing my chin toward the injured side of my neck and lowering it?
In a normal swallow - I failed the test, so I got more water, turned my head to the right and lowered my chin. That worked. No cough at all.
Over the weekend I tested my new swallowing position with tea, beer, and coffee. All were successful. No coughing. So, I fessed up to my doc and told him I had been cheating a bit.
I thought I was going to get the stern speech and reprimand. Instead, my doc was ecstatic.
When my doc was in training, one of the two doctors he worked with used the swallow test I had found and had his patients try different head positions until they found a way to swallow successfully.
I am now cleared to take all fluids by mouth. Encouraged is a better word than cleared. Ordered by the doc is probably still more accurate. Plus, he wants me to start trying some eating. He recommended starting with puddings. I'm supposed to try anything and everything. If I cough, stop eating that food until there's more healing.
Then he inspected my throat and ended up sticking his finger down my throat as far as he could reach. He said everything he could feel was normal tissue and previously that area had been mostly scar tissue. Maybe that's involved in my improved swallowing and talking.
I will fail the barium swallow test Wednesday (two days from when this was written). They won't let me "trick" the test by holding my head in a certain position. That will give my speech therapist information on exactly where and how my swallow leaks into my lungs when I swallow in a normal position. Then she can devise exercises to strengthen the muscles involved and gain flexibility where it's needed.
I imagine scar tissue is still involved in my swallowing. Many medical procedures leave scar tissue that must be broken down before a full range of motion can be achieved. It's just a bit different to think in terms of exercising your tongue to break down the scar tissue as opposed to exercising a shoulder to remove scar tissue from a medical procedure there.
Monday, December 28, 2009
Saturday, December 26, 2009
New Swallow Test Coming
The CAT scan was clean. I would have posted sooner if there had been a problem. I've got some scar tissue in my neck. Surprise! Surprise!
My oncologist is so convinced there's not much to watch for that he's moved me to an appointment every 4 months. He's talking about a PET scan next. Those things will show up the slightest traces of cancer before they can be detected by any other method.
When I had the swallowing problem, I decided I needed to be ready for a feeding tube for 1 to 3 months. It's almost 4 months now. I get another swallow test Dec. 30. That's the one my therapist wants to evaluate to determine a rehab schedule. I was hoping I would pass this one and not need the rehab, but that's very doubtful.
I've been "cheating" and drinking tea. It's just a cup at a time and there's very little possibility of bacteria setting up in tea if it got into my lungs. I figure I'm not likely to get pneumonia if a few drops of tea (a day) get into my lungs.
There is a "water swallow" test that's pretty simple. Drink some water. If you cough, you flunk the test - there's water getting into your lungs. If you pass the test, there's an 80% correlation to passing the "barium swallow" test I'm getting next week.
I cough. Not much. It's maybe part of a drop (per swallow) that's getting into my lungs, but that's enough to fail the test. Unfortunately, multiply that by the number of times you swallow to eat three meals a day and "part of a drop" each time becomes significant.
I've found ways I can swallow so I can drink without coughing, but I doubt they will let me get away with that during the real test. Part of the problem is that I'm not used to swallowing. That makes it harder to pass the test as time passes. Even with the water tests I've done, I'm much better with a bit of practice than I am when I start.
My oncologist is so convinced there's not much to watch for that he's moved me to an appointment every 4 months. He's talking about a PET scan next. Those things will show up the slightest traces of cancer before they can be detected by any other method.
When I had the swallowing problem, I decided I needed to be ready for a feeding tube for 1 to 3 months. It's almost 4 months now. I get another swallow test Dec. 30. That's the one my therapist wants to evaluate to determine a rehab schedule. I was hoping I would pass this one and not need the rehab, but that's very doubtful.
I've been "cheating" and drinking tea. It's just a cup at a time and there's very little possibility of bacteria setting up in tea if it got into my lungs. I figure I'm not likely to get pneumonia if a few drops of tea (a day) get into my lungs.
There is a "water swallow" test that's pretty simple. Drink some water. If you cough, you flunk the test - there's water getting into your lungs. If you pass the test, there's an 80% correlation to passing the "barium swallow" test I'm getting next week.
I cough. Not much. It's maybe part of a drop (per swallow) that's getting into my lungs, but that's enough to fail the test. Unfortunately, multiply that by the number of times you swallow to eat three meals a day and "part of a drop" each time becomes significant.
I've found ways I can swallow so I can drink without coughing, but I doubt they will let me get away with that during the real test. Part of the problem is that I'm not used to swallowing. That makes it harder to pass the test as time passes. Even with the water tests I've done, I'm much better with a bit of practice than I am when I start.
Wednesday, December 02, 2009
Checking In
I wish there were some way readers could tell if I'm not posting because I'm in the hospital or if it's because there's not much to report. This time it's the latter. Not much is really happening.
Last time I saw the doc that did the feeding tube, I was supposed to schedule a colonoscopy. Just routine, no reason for alarm. I forgot. Dang! How could I forget to schedule that?
The swelling in my neck is slowly, slowly going down. I've actually had a "real" voice a few days in the last couple of weeks. I could more or less shout a few times. The voice I'm getting now isn't anything you'd recognize as my voice, but it's a voice, so that's good. Today it went away and all I've got is the half-duck and half-frog sort of hoarse croaking that I've had since the radiation hit.
I've been set up with a speech therapist to work with my swallowing problem. The swallow tests up to this point didn't give her a good definition of the cause of the problem, so I need another. I'm kind of stalling on getting that one scheduled. I figure that if I wait longer, there's a chance that my healing and less swelling could let me pass the test. The doc who did the surgery agrees and thinks I might pass the next test.
Speaking of the doc who did the surgery, I see him once a month. He's examining me for any signs of cancer showing up in my neck or throat. I saw him earlier this week and he can't find anything abnormal. It's his attitude that if I can get through one year after the surgery, that's confirmation that the original cancer is gone. Then I go into monitoring for any new outbreaks. That puts me pretty much back into the normal population for danger from cancer. I'm a little more at risk because I've had it, which is proof that I'm not genetically shielded from cancer risks.
I get a CAT scan next week to take a deeper look. That is routine. In fact, it's routine at 6 months. My oncologist delayed it because he was confident there was no need for it then.
I'm building up some stamina, but that's coming slowly. I still need ridiculous amounts of sleep. Fairly intensive chemotherapy and radiation takes a bigger toll than I had expected.
I've found out that some people with my type of cancer are physically unable to finish the chemo and radiation treatments. If I had known that was an option, I wonder if I would have finished. The last 3 weeks were just brutal. The only attitude I really had during that time was just to survive and see what happened after that.
There are no statistics anybody can find (or would admit they could find) that track mortality if radiation and chemo is either refused or stopped before the recommended series is finished. There has to be something that it's based on, so I guess I did what's best long term. It's nasty short-term - and short-term is about a year.
Last time I saw the doc that did the feeding tube, I was supposed to schedule a colonoscopy. Just routine, no reason for alarm. I forgot. Dang! How could I forget to schedule that?
The swelling in my neck is slowly, slowly going down. I've actually had a "real" voice a few days in the last couple of weeks. I could more or less shout a few times. The voice I'm getting now isn't anything you'd recognize as my voice, but it's a voice, so that's good. Today it went away and all I've got is the half-duck and half-frog sort of hoarse croaking that I've had since the radiation hit.
I've been set up with a speech therapist to work with my swallowing problem. The swallow tests up to this point didn't give her a good definition of the cause of the problem, so I need another. I'm kind of stalling on getting that one scheduled. I figure that if I wait longer, there's a chance that my healing and less swelling could let me pass the test. The doc who did the surgery agrees and thinks I might pass the next test.
Speaking of the doc who did the surgery, I see him once a month. He's examining me for any signs of cancer showing up in my neck or throat. I saw him earlier this week and he can't find anything abnormal. It's his attitude that if I can get through one year after the surgery, that's confirmation that the original cancer is gone. Then I go into monitoring for any new outbreaks. That puts me pretty much back into the normal population for danger from cancer. I'm a little more at risk because I've had it, which is proof that I'm not genetically shielded from cancer risks.
I get a CAT scan next week to take a deeper look. That is routine. In fact, it's routine at 6 months. My oncologist delayed it because he was confident there was no need for it then.
I'm building up some stamina, but that's coming slowly. I still need ridiculous amounts of sleep. Fairly intensive chemotherapy and radiation takes a bigger toll than I had expected.
I've found out that some people with my type of cancer are physically unable to finish the chemo and radiation treatments. If I had known that was an option, I wonder if I would have finished. The last 3 weeks were just brutal. The only attitude I really had during that time was just to survive and see what happened after that.
There are no statistics anybody can find (or would admit they could find) that track mortality if radiation and chemo is either refused or stopped before the recommended series is finished. There has to be something that it's based on, so I guess I did what's best long term. It's nasty short-term - and short-term is about a year.
Friday, November 13, 2009
Bad News on Swallowing
I didn't pass the swallow test. I'm still getting some things I swallow into my lungs.
They're setting me up with a speech therapist. Oddly enough, it is speech therapists who work with swallowing disorders.
This means at least another month before another swallow test. I suspect it will be longer.
The inability to swallow properly didn't appear on any of the anticipated side effects lists from either my doctors or my own research. Difficulty swallowing had lengthy discussions. Getting stuff I swallow into my lungs wasn't mentioned. The doctors really haven't said much about it and I was expecting it to just be a temporary bump in the road.
From the research I've done since I developed the problem, a surgical correction is unlikely. The condition can be permanent when it follows surgery.
I suspect it's related to the swelling (edema) on my neck. Now that some nerves have grown back in some areas I can feel that there is about as much swelling inside my throat as there is outside on my neck. I think that's interfering with my swallowing.
The problem with that is my body has no way of dealing with that swelling. The lymph system that formerly dealt with it was removed. I've been told that the swelling will just go away by itself given enough time. It's been 8 months since the surgery that caused the swelling.
I did some digging into what happens when the lymph system doesn't work. Mine obviously doesn't work on the right side of my neck - it's gone. The most common thing that many people are familiar with is elephantiasis.
Elephantiasis is caused by a parasite that blocks the lymph system and prevents it from functioning. You've probably seen pictures of people in Africa or India with elephantiasis. Guys are often photographed with their private parts in a wheelbarrow and their legs about 3' around.
I am eagerly awaiting the next appointment with my doctor. I have some questions to ask about some subjects he has either dodged around or has been less than direct in answering.
They're setting me up with a speech therapist. Oddly enough, it is speech therapists who work with swallowing disorders.
This means at least another month before another swallow test. I suspect it will be longer.
The inability to swallow properly didn't appear on any of the anticipated side effects lists from either my doctors or my own research. Difficulty swallowing had lengthy discussions. Getting stuff I swallow into my lungs wasn't mentioned. The doctors really haven't said much about it and I was expecting it to just be a temporary bump in the road.
From the research I've done since I developed the problem, a surgical correction is unlikely. The condition can be permanent when it follows surgery.
I suspect it's related to the swelling (edema) on my neck. Now that some nerves have grown back in some areas I can feel that there is about as much swelling inside my throat as there is outside on my neck. I think that's interfering with my swallowing.
The problem with that is my body has no way of dealing with that swelling. The lymph system that formerly dealt with it was removed. I've been told that the swelling will just go away by itself given enough time. It's been 8 months since the surgery that caused the swelling.
I did some digging into what happens when the lymph system doesn't work. Mine obviously doesn't work on the right side of my neck - it's gone. The most common thing that many people are familiar with is elephantiasis.
Elephantiasis is caused by a parasite that blocks the lymph system and prevents it from functioning. You've probably seen pictures of people in Africa or India with elephantiasis. Guys are often photographed with their private parts in a wheelbarrow and their legs about 3' around.
I am eagerly awaiting the next appointment with my doctor. I have some questions to ask about some subjects he has either dodged around or has been less than direct in answering.
Saturday, October 31, 2009
7-Month Checkup
7 months from my surgery and I'm still clean. No cancer. In a little over a month I get a CAT scan to take a closer look. My throat is still complaining about the radiation and I'm about as hoarse as it's possible to get and still talk. No one knows when I'll get recovery of my voice. Some swelling has to work its way out of my throat and the method for removing the swelling was removed in the surgery.
I've got a swallow test scheduled in about 2 weeks. If I pass that, I get to start eating and drinking again. I don't even want to consider not passing it. I'm running short on my patience with this no eating and no drinking stuff.
Even if I pass the swallow test, the doctor that put the feeding tube in will not remove it until I've been eating normally for 3 or 4 months. I've only had about 4 weeks of eating by mouth since the beginning of July. It could be interesting starting eating again. I think I'll start with easy-to-tolerate foods instead of stuff I'm really looking forward to eating again.
I've got a swallow test scheduled in about 2 weeks. If I pass that, I get to start eating and drinking again. I don't even want to consider not passing it. I'm running short on my patience with this no eating and no drinking stuff.
Even if I pass the swallow test, the doctor that put the feeding tube in will not remove it until I've been eating normally for 3 or 4 months. I've only had about 4 weeks of eating by mouth since the beginning of July. It could be interesting starting eating again. I think I'll start with easy-to-tolerate foods instead of stuff I'm really looking forward to eating again.
Saturday, October 17, 2009
Random Ramblings
Oncologist is so confident I'm clean (no cancer) that he delayed my 6-month CAT scan for 2 months.
My body is starting to adjust nicely to the 15 - 20 pound lighter version that it has achieved.
In anticipation of actually eating again, I sometimes give myself 2 cans of "food" at the same feeding to try to stretch my stomach a bit.
This would be a dieter's dream-come-true. Absolute calorie control and control of the size of my stomach. Except for that danged list of "no"s that I've got.
No:
-- Caffeine
-- Chocolate
-- Meat
-- Desserts
-- Adult beverages or soft drinks
-- And on, and on, and on, and on, and...
I can cheat the caffeine and beverages and put them straight into my stomach. Whooppee! There's a reason I like to drink tea or coffee instead of eating No-Doz.
I've discovered I enjoy the drinking part of adult beverages and am not thrilled with the effect that provides. I have the ultimate beer bong, but using it is really disappointing.
Swallowing feels "more right" now than it did. I think I'll get a swallow test scheduled around Halloween and I think I'll pass it.
I still need around 12 hours of sleep a day. That's insane, but I crash if I don't sleep that much, so I may as well plan on it.
I don't ever again want to hear my wife ask me if I want to take a walk and the only place I can go is up and down some hospital corridors. A "walk" is fresh air, sunshine, changing seasons - and all that goes along with that.
Living is the hard part. Dying is easy. I've done it twice and never even noticed.
There's no "Undo" button in life.
I've still got a few scabs on my neck from the radiation burns. The inside of my throat was burned just as badly, so I shouldn't be surprised that my throat is still in the healing stage.
If reading this made you want to go light up a cigarette, then you're missing the point pretty badly.
My body is starting to adjust nicely to the 15 - 20 pound lighter version that it has achieved.
In anticipation of actually eating again, I sometimes give myself 2 cans of "food" at the same feeding to try to stretch my stomach a bit.
This would be a dieter's dream-come-true. Absolute calorie control and control of the size of my stomach. Except for that danged list of "no"s that I've got.
No:
-- Caffeine
-- Chocolate
-- Meat
-- Desserts
-- Adult beverages or soft drinks
-- And on, and on, and on, and on, and...
I can cheat the caffeine and beverages and put them straight into my stomach. Whooppee! There's a reason I like to drink tea or coffee instead of eating No-Doz.
I've discovered I enjoy the drinking part of adult beverages and am not thrilled with the effect that provides. I have the ultimate beer bong, but using it is really disappointing.
Swallowing feels "more right" now than it did. I think I'll get a swallow test scheduled around Halloween and I think I'll pass it.
I still need around 12 hours of sleep a day. That's insane, but I crash if I don't sleep that much, so I may as well plan on it.
I don't ever again want to hear my wife ask me if I want to take a walk and the only place I can go is up and down some hospital corridors. A "walk" is fresh air, sunshine, changing seasons - and all that goes along with that.
Living is the hard part. Dying is easy. I've done it twice and never even noticed.
There's no "Undo" button in life.
I've still got a few scabs on my neck from the radiation burns. The inside of my throat was burned just as badly, so I shouldn't be surprised that my throat is still in the healing stage.
If reading this made you want to go light up a cigarette, then you're missing the point pretty badly.
Wednesday, September 30, 2009
6 Months From Diagnosis - The First Milestone
I had a visual and manual examination of my throat and neck today. There is no sign of any regrowth of the cancer. Tomorrow I see my oncologist and I suspect he will be scheduling a PET scan to look for stuff that doesn't show up with visual and manual exams.
The cancer part of this seems to be going great and that's the ultimate battle that's going on.
The recovery from treatment isn't going as well. I'm stuck with "nothing by mouth" ( that includes water and beer - damn!) for at least another month. I've got an appointment with my primary care doctor in a little over a week - maybe I can convince her to schedule a swallow test. My neck and throat doctor doesn't think I'd pass one for a while. There's no benefit in having the test unless I pass it. Maybe I should listen to the throat guy.
The cancer part of this seems to be going great and that's the ultimate battle that's going on.
The recovery from treatment isn't going as well. I'm stuck with "nothing by mouth" ( that includes water and beer - damn!) for at least another month. I've got an appointment with my primary care doctor in a little over a week - maybe I can convince her to schedule a swallow test. My neck and throat doctor doesn't think I'd pass one for a while. There's no benefit in having the test unless I pass it. Maybe I should listen to the throat guy.
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