I've done it! I actually got on a stage and sang a couple of karaoke songs.
To call what I have a "singing voice" is wrong - just plain wrong. I can almost hit the notes over half the vocal range I used to have. I can hear when the note is off and correct it, which is a recent occurrence.
I have to pick songs carefully. My singing voice is incredibly raspy. Joe Cocker-like raspy. The one paralyzed vocal cord is stuck in a lower register than I used to sing in. That's why when I was first able to talk (in anything other than a hoarse whisper), my voice had dropped about an octave. Now that vocal cord provides very nice bass overtones to the "notes" my other vocal cord is attempting to sing. In many ways it's a "better" commercial voice than I used to have.
It took a lot of courage to grab a microphone and sing with what I've got left of a voice. I can put some pain in my voice. If I sing a song about things goin' bad, you will BELIEVE just by listening to the sound of my vocals.
I got a very good round of applause after my first song. I think that was the best response any singer got all night. I got polite applause after the second song, which was more than that one deserved. A couple of people told me how awesome my voice was. I took that as proof they had been at the bar too long.
If I'm careful with song selections, I'm a better blues singer now than I was before all this stuff happened. I have a sound that is associated with blues singers. I don't exactly sound like a white guy trying to "cover" any more. I am absolutely worthless at anything vocal instructors tried to teach me or in any kind of groups that might be identified as quartets, choirs, or anything else where "sounding nice" is a benefit.
But, I did it. I sang in public. I proved to myself that I can do it. Now I'm thinking of ways to work up some material that I can deal with. I have all the gear to lay down drum tracks, bass tracks, keyboards, strings, horns, etc. I can create the parts a band would play. That's a ton of work. I have to deconstruct the song to figure out and learn the various instruments parts, then reconstruct it one piece at a time. With my stamina issues, I'm going to have to give something else up to do that. The Wichita State basketball season tickets are up or consideration. Tough decision there.
Wednesday, February 09, 2011
Cancer Fatigue
The Good News - Absolutely not a trace of cancer in my body.
It's normal to have a loss of stamina and energy after radiation and chemo. It's almost 18 months since my treatments ended and I'm still experiencing fatigue. I asked my oncologist if still being fatigued was normal at this stage and if I should expect improvements past this point.
The answers were resounding yes's to both questions.
This is another of the areas where every individual's experience will vary. My day-to-day situation is that I'm barely able to work a 40-hour week. If I work 40 hours and leave the house one night a week, that uses up all the energy I've got for the week. A second night out during the week requires an extra hour or two of sleep a couple of nights during the week. That gets a little tricky since I can only sleep about 6 hours straight before I wake up. I have to take a nap when I get off work and then try to still get at least 6 hours of sleep overnight.
I've pretty much lost one day of every weekend. I try to get at least 16 hours of sleep one day of every weekend. A year ago, I was only able to work about 4 hours without needing some sleep, so I'm making progress. It's just very slow progress and I'm having some trouble adapting to the loss of leisure time.
A complicating factor is the difficulty with eating. I probably spend 2 to 2-1/2 hours every day eating. I don't mean taking an hour for lunch. I mean requiring an hour to physically eat a small meal.
This situation has a name. It's called Cancer Fatigue. Probably everyone who has chemo and radiation will have it to some extent. Cancer Fatigue was never mentioned as one of the side effects I should expect. It's a serious complication. In severe cases, people are unable to work, which means they lose their insurance coverage.
I've been approved for a trial by the Mayo Clinic for a potential remedy to the fatigue problem. I'm getting either ginseng or a placebo. I don't have a lot of confidence in ginseng as a "cure". The trial is being done because so many cancer survivors are self-medicating with ginseng, that a trial is needed.
It's normal to have a loss of stamina and energy after radiation and chemo. It's almost 18 months since my treatments ended and I'm still experiencing fatigue. I asked my oncologist if still being fatigued was normal at this stage and if I should expect improvements past this point.
The answers were resounding yes's to both questions.
This is another of the areas where every individual's experience will vary. My day-to-day situation is that I'm barely able to work a 40-hour week. If I work 40 hours and leave the house one night a week, that uses up all the energy I've got for the week. A second night out during the week requires an extra hour or two of sleep a couple of nights during the week. That gets a little tricky since I can only sleep about 6 hours straight before I wake up. I have to take a nap when I get off work and then try to still get at least 6 hours of sleep overnight.
I've pretty much lost one day of every weekend. I try to get at least 16 hours of sleep one day of every weekend. A year ago, I was only able to work about 4 hours without needing some sleep, so I'm making progress. It's just very slow progress and I'm having some trouble adapting to the loss of leisure time.
A complicating factor is the difficulty with eating. I probably spend 2 to 2-1/2 hours every day eating. I don't mean taking an hour for lunch. I mean requiring an hour to physically eat a small meal.
This situation has a name. It's called Cancer Fatigue. Probably everyone who has chemo and radiation will have it to some extent. Cancer Fatigue was never mentioned as one of the side effects I should expect. It's a serious complication. In severe cases, people are unable to work, which means they lose their insurance coverage.
I've been approved for a trial by the Mayo Clinic for a potential remedy to the fatigue problem. I'm getting either ginseng or a placebo. I don't have a lot of confidence in ginseng as a "cure". The trial is being done because so many cancer survivors are self-medicating with ginseng, that a trial is needed.
Tuesday, September 14, 2010
It's 18 Months Since My Surgery
The pain from the shingles is slowly going away. I'm able to work with some pain meds. I'm taking 2 Lyrica and 2 Tylenol 4's a day now. I don't feel the "pain med effects" from those any more, but I have methods of measuring my mental capabilities and I'm at about 85%, so there is some effect in that area.
I managed to do the repairs on my roto-tiller (Troy-Bilt Horse) and got it running this evening. Then I tilled what used to be my garden area so I can plant that to grass. The scenes they show in the ads show someone walking beside the tiller and holding it with one hand. That works if you have nice, soft soil or you've alredy tilled it a couple of times.
Now, if you have rock-hard clay with grass roots in it, that's not quite the way it works. The tines on this tiller rotate the same direction as the wheels. The wheels turn nice and slow, but the tines turn at something approaching warp speed. When they can't dig in, they cause the tiller to take off at about 6 mph and the whole thing starts bouncing up and down as I go running after it. Once I get it back reasonably under control, I pull back and down as hard as I can, dig my feet in and try to get the tines to dig back into the ground.
That got to be quite an aerobic workout. I told my wife that if I would till that much every day for 6 months, I'd be dead within a week. I got it all tilled. I'm going to till it once more and then get grass growing there.
I told that little story to show that I'm getting my strength and stamina back. I'm not as strong as I was and I don't have all my stamina back yet, but I can do things that will let me regain everything in those areas.
At my largest, I was 171 pounds. I was down at 163 when all this started. At my worst, I was down to 138. Now I'm at 148 and able to hold my weight there. That's the only advantage I've found to eating being difficult.
Beef is pretty much out of my diet. Meat loaf is about the only way I can eat beef with any level of comfort. Fortunately, I like pork almost as much as beef and I can eat pork pretty comfortably. I bought a smoker and have mulberry trees in my back yard that always need to be trimmed. That combination gives me wood to burn and a way to smoke ribs and pork tenderloins. I don't have any problem with cholesterol or blockage in my veins, so ribs are fine for me to eat.
The last year and a half has been a rocky road. I feel I've had a guided tour of Hell. I've made hard eye contact with Satan, gave him an obscene gesture, and told him to take a hike. Some times it gets easy to think about the bad times. I have good days and bad days. The little trip I've taken is different for everyone who takes it, but I have managed to keep a decent attitude about things - well, most of the time - okay, some of the time.
Some of the highlights in my life the last 18 months. (Other than being cancer-free)
1) I have a new position at work with more responsibilities, higher qualifications and requirements, and an increase in benefits consistent with that.
2) I dug a hole 18" deep and three feet across and stuck a tree in it.
3) I dug up an iris bed along my driveway and planted that to grass.
4) I bought an electronic keyboard and started playing keyboards again. That got sidetracked over the summer.
5) I repaired my tiller because the dealer was backed up for 4 weeks and I needed it quicker than that. I had no clue I could fix that thing.
6) I'm getting involved with fund-raising for cancer research.
That's probably more positives in my life in the last 18 months than I would have had if this hadn't happened to me.
I managed to do the repairs on my roto-tiller (Troy-Bilt Horse) and got it running this evening. Then I tilled what used to be my garden area so I can plant that to grass. The scenes they show in the ads show someone walking beside the tiller and holding it with one hand. That works if you have nice, soft soil or you've alredy tilled it a couple of times.
Now, if you have rock-hard clay with grass roots in it, that's not quite the way it works. The tines on this tiller rotate the same direction as the wheels. The wheels turn nice and slow, but the tines turn at something approaching warp speed. When they can't dig in, they cause the tiller to take off at about 6 mph and the whole thing starts bouncing up and down as I go running after it. Once I get it back reasonably under control, I pull back and down as hard as I can, dig my feet in and try to get the tines to dig back into the ground.
That got to be quite an aerobic workout. I told my wife that if I would till that much every day for 6 months, I'd be dead within a week. I got it all tilled. I'm going to till it once more and then get grass growing there.
I told that little story to show that I'm getting my strength and stamina back. I'm not as strong as I was and I don't have all my stamina back yet, but I can do things that will let me regain everything in those areas.
At my largest, I was 171 pounds. I was down at 163 when all this started. At my worst, I was down to 138. Now I'm at 148 and able to hold my weight there. That's the only advantage I've found to eating being difficult.
Beef is pretty much out of my diet. Meat loaf is about the only way I can eat beef with any level of comfort. Fortunately, I like pork almost as much as beef and I can eat pork pretty comfortably. I bought a smoker and have mulberry trees in my back yard that always need to be trimmed. That combination gives me wood to burn and a way to smoke ribs and pork tenderloins. I don't have any problem with cholesterol or blockage in my veins, so ribs are fine for me to eat.
The last year and a half has been a rocky road. I feel I've had a guided tour of Hell. I've made hard eye contact with Satan, gave him an obscene gesture, and told him to take a hike. Some times it gets easy to think about the bad times. I have good days and bad days. The little trip I've taken is different for everyone who takes it, but I have managed to keep a decent attitude about things - well, most of the time - okay, some of the time.
Some of the highlights in my life the last 18 months. (Other than being cancer-free)
1) I have a new position at work with more responsibilities, higher qualifications and requirements, and an increase in benefits consistent with that.
2) I dug a hole 18" deep and three feet across and stuck a tree in it.
3) I dug up an iris bed along my driveway and planted that to grass.
4) I bought an electronic keyboard and started playing keyboards again. That got sidetracked over the summer.
5) I repaired my tiller because the dealer was backed up for 4 weeks and I needed it quicker than that. I had no clue I could fix that thing.
6) I'm getting involved with fund-raising for cancer research.
That's probably more positives in my life in the last 18 months than I would have had if this hadn't happened to me.
Friday, August 20, 2010
I'm Getting Feeling Back In Some Formerly Numb Areas
That's not a good thing. It's resulted in 24 hours a day pain. I've got the meds figured out that allow me to sleep and just barely allow me to work.
Loritabs work during the day. I think I can work while taking those, but I'm not certain of the quality of my work. It used to be just one in the morning and I was good for the day. Now I need another around the middle of the afternoon. Without the pain meds I can't work.
I can't take Loritabs over night. They have a diuretic effect on me. It's OK to drink water all day long and go to the bathroom once an hour, but that doesn't cut it over night. I've got neurontin now (I hadn't heard of them until just now) and they work well over night.
I have to wait until at least the end of September to do anything about the situation. My doc wants to make sure the pain isn't anything left over from shingles before he removes a muscle. The muscle controls lowering my head on the right side. If I lose it, my head will go down and left when I nod and I will be unable to move my chin down and to the right.
I hope I can make it until the end of September. The pain has me actually considering a Social Security disability. That may sound drastic, but I'm not any where near 100% productivity now. It's unfair to an employer to continue taking a paycheck for 50% productivity and I'm afraid that's about where I'm at right now.
I'm right on the borderline of even being able to work. My pain med dose right now just barely gets the pain levels to where I can work. The mental aspect of pain meds is also borderline. If I have to up my dosage, I'm afraid I will be too thick-headed to work effectively.
I've been through a lot, but always had the knowledge that things would get better if I hung in there and just endured whatever was happening to me. Now I'm supposed to be at the point of fully recovered from the treatments and this pops up.
This one is kicking my butt. Even with meds, there's enough ongoing pain that I've completely lost any appetite. I force myself to eat because I know I have to do that.
A lifetime of pain wasn't one of the side effects listed when I was getting counseling before the radiation and chemo started. Throw this in with the inability to taste food properly, no saliva, great difficulty swallowing, permanent sore throat, etc. and I don't know if I would have gone ahead with the treatments. It's to the point where my wife has wondered if she made the right decision when she told the docs not to pull the plug when I had my nearly fatal episode a little over a year ago.
Loritabs work during the day. I think I can work while taking those, but I'm not certain of the quality of my work. It used to be just one in the morning and I was good for the day. Now I need another around the middle of the afternoon. Without the pain meds I can't work.
I can't take Loritabs over night. They have a diuretic effect on me. It's OK to drink water all day long and go to the bathroom once an hour, but that doesn't cut it over night. I've got neurontin now (I hadn't heard of them until just now) and they work well over night.
I have to wait until at least the end of September to do anything about the situation. My doc wants to make sure the pain isn't anything left over from shingles before he removes a muscle. The muscle controls lowering my head on the right side. If I lose it, my head will go down and left when I nod and I will be unable to move my chin down and to the right.
I hope I can make it until the end of September. The pain has me actually considering a Social Security disability. That may sound drastic, but I'm not any where near 100% productivity now. It's unfair to an employer to continue taking a paycheck for 50% productivity and I'm afraid that's about where I'm at right now.
I'm right on the borderline of even being able to work. My pain med dose right now just barely gets the pain levels to where I can work. The mental aspect of pain meds is also borderline. If I have to up my dosage, I'm afraid I will be too thick-headed to work effectively.
I've been through a lot, but always had the knowledge that things would get better if I hung in there and just endured whatever was happening to me. Now I'm supposed to be at the point of fully recovered from the treatments and this pops up.
This one is kicking my butt. Even with meds, there's enough ongoing pain that I've completely lost any appetite. I force myself to eat because I know I have to do that.
A lifetime of pain wasn't one of the side effects listed when I was getting counseling before the radiation and chemo started. Throw this in with the inability to taste food properly, no saliva, great difficulty swallowing, permanent sore throat, etc. and I don't know if I would have gone ahead with the treatments. It's to the point where my wife has wondered if she made the right decision when she told the docs not to pull the plug when I had my nearly fatal episode a little over a year ago.
Wednesday, August 04, 2010
Wash Your Hands
All through flu season, I was obsessive about washing my hands. I made it through and got overconfident. Now I've had some opportunistic invasions take advantage of my weakened immune system. Even the minor ones turned out bad. I need to remember that every day is flu season.
I got a basically harmless fungus behind my right ear. That area is numb, so I didn't feel anything. There's no lymph system there, so there's limited immune capabilities. Anti-fungal shampoos have helped, but the fungus hangs on. It's a little itchy and produces some flaking, but that's it. It's a common fungus and not really dangerous. The fact that I'm mentioning it means there's more coming.
Another opportunistic invader was shingles in the area where I had my surgery. Pain in that area could be from the surgery or even a result of recovery from the surgery (as nerves start working again). The pain I had got me to the doc quick. We caught the shingles early and had them gone within a week.
About a week after the shingles were diagnosed as finished, I had a pain in a muscle that's stretched really tight from the surgery. I thought maybe more scar tissue was forming and shortening the muscle. I called my doc. The pain was enough that I used his emergency number. He was alarmed enough that he got me in that afternoon. I drove 25 mile to Newton to see him where he was working that day.
I need to do a rundown of pain levels to continue this in ways that can be understood. On a scale of 1 - 10:
10 = Nerves stop registering pain because they've been registering the maximum possible for a long time and it doesn't help. They give up and quit. Been there.
9 = Produces nausea to the verge of vomiting, entire body may become flushed, sweat breaks out everywhere.
6 = You will beg for morphine.
Doc gave me two meds to determine whether it was scar tissue affecting the muscle or whether I had post-herpetic neuralgia. If it was scar tissue, he would have to cut the affected muscle. Post-herpetic neuralgia is the pain from shingles continues after the breakout is finished. Post-herpetic neuralgia can be permanent.
It was post-herpetic neuralgia. Plus I was so messed up I wanted nothing to do with the drugs that are supposed to help it. Then I discovered I was running a fever.
Another opportunistic infection gave me some variety of influenza in the middle of summer. Fever, achy muscles, extreme fatigue, digestive upset, congestion, cough, sleep 16 hours a day.
Then the post-herpetic neuralgia spread into the area behind my ear where I have the itchy fungus. Shingles pain is very sensitive to touch. If I scratched that area I had about 15 seconds before I got level 9 shingles pain. That 15 seconds gave me enough time to really get into the scratching before I realized I was in trouble.
I called my doc Monday morning. He requested that when he gave me the meds Friday. I described my symptoms and he had me in for a CAT scan so quick that I only had time to throw on some clothes and drive there. I had given him about 3 potential symptoms that indicate a possible return of the cancer.
Sunday night the pain kept waking me up about every hour. When I woke up I found myself scratching my head before I was conscious enough to realize that was a bad idea. The only thing I could do was grab the mattress and squeeze hard and wait for the level 9 pain to subside.
Both of the meds I got lately to control the pain overnight really leave me messed up the next day. Thick-headed, groggy, downed-out are phrases describing how they make me feel.
I have an old scrip with a few pills remaining for a sedative that lets me sleep, totally eliminates the shingles pain, and so far hasn't had any effects the next day.
I hope I can get a new scrip. It's a fairly heavy sedative - one they give surgery patients just before surgery - the one they used to keep me unconscious for 2 days last summer when I was in ICU. I'ts also the best shingles med I've found.
I got a basically harmless fungus behind my right ear. That area is numb, so I didn't feel anything. There's no lymph system there, so there's limited immune capabilities. Anti-fungal shampoos have helped, but the fungus hangs on. It's a little itchy and produces some flaking, but that's it. It's a common fungus and not really dangerous. The fact that I'm mentioning it means there's more coming.
Another opportunistic invader was shingles in the area where I had my surgery. Pain in that area could be from the surgery or even a result of recovery from the surgery (as nerves start working again). The pain I had got me to the doc quick. We caught the shingles early and had them gone within a week.
About a week after the shingles were diagnosed as finished, I had a pain in a muscle that's stretched really tight from the surgery. I thought maybe more scar tissue was forming and shortening the muscle. I called my doc. The pain was enough that I used his emergency number. He was alarmed enough that he got me in that afternoon. I drove 25 mile to Newton to see him where he was working that day.
I need to do a rundown of pain levels to continue this in ways that can be understood. On a scale of 1 - 10:
10 = Nerves stop registering pain because they've been registering the maximum possible for a long time and it doesn't help. They give up and quit. Been there.
9 = Produces nausea to the verge of vomiting, entire body may become flushed, sweat breaks out everywhere.
6 = You will beg for morphine.
Doc gave me two meds to determine whether it was scar tissue affecting the muscle or whether I had post-herpetic neuralgia. If it was scar tissue, he would have to cut the affected muscle. Post-herpetic neuralgia is the pain from shingles continues after the breakout is finished. Post-herpetic neuralgia can be permanent.
It was post-herpetic neuralgia. Plus I was so messed up I wanted nothing to do with the drugs that are supposed to help it. Then I discovered I was running a fever.
Another opportunistic infection gave me some variety of influenza in the middle of summer. Fever, achy muscles, extreme fatigue, digestive upset, congestion, cough, sleep 16 hours a day.
Then the post-herpetic neuralgia spread into the area behind my ear where I have the itchy fungus. Shingles pain is very sensitive to touch. If I scratched that area I had about 15 seconds before I got level 9 shingles pain. That 15 seconds gave me enough time to really get into the scratching before I realized I was in trouble.
I called my doc Monday morning. He requested that when he gave me the meds Friday. I described my symptoms and he had me in for a CAT scan so quick that I only had time to throw on some clothes and drive there. I had given him about 3 potential symptoms that indicate a possible return of the cancer.
Sunday night the pain kept waking me up about every hour. When I woke up I found myself scratching my head before I was conscious enough to realize that was a bad idea. The only thing I could do was grab the mattress and squeeze hard and wait for the level 9 pain to subside.
Both of the meds I got lately to control the pain overnight really leave me messed up the next day. Thick-headed, groggy, downed-out are phrases describing how they make me feel.
I have an old scrip with a few pills remaining for a sedative that lets me sleep, totally eliminates the shingles pain, and so far hasn't had any effects the next day.
I hope I can get a new scrip. It's a fairly heavy sedative - one they give surgery patients just before surgery - the one they used to keep me unconscious for 2 days last summer when I was in ICU. I'ts also the best shingles med I've found.
Monday, July 19, 2010
A Year After I Died
Cancer treatments give patients survivable amounts of deadly substances. The key word is survivable and individuals react differently. It was a year ago that I was about to get out of the hospital after defying that survivable label.
Looking back, that was a really miserable time. My radiation oncologist told me nothing would get worse because it wasn't possible for my nerves to register more pain and they were likely to give up reporting pain because it did no good. That, and a brief break from radiation and chemo helped a bit. Then they changed angles a bit with the radiation and added another entire section of my throat to the area that was already reporting the maximum possible pain.
I was too weak to sit up on a bench after getting my radiation treatments. I went into survival mode. It was just live another day. Do that one day at a time and things would get better. I just flat out didn't care about anything except the fact that I was still alive. That was the only thing that mattered.
At the time I didn't realize how far I had deteriorated or how bad things really were. As long as I was alive, I was in good shape. that's how you get to feel after being maintained on the very edge of death for a month.
So, where am I a year after that episode? Well, first, when I review this blog, I'm amazed at how well I cleaned everything up, pretty much sugar-coated it, and kept it very upbeat and positive.
The improvements have been dramatic. I'm almost to the point where anything remaining will be permanent. September is when I should be at "full recovery". Other theories speculate that damage from radiation can continue for years.
The biggest remaining radiation damage involves transforming muscle tissue into fibrous tissue. Long-term radiation damage continues that process for some time. It appears to be based on the individual for how long it lasts. In my case, I'm still getting a build-up of fibrous material and scar tissue in my throat. I'd guess there's probably a cubic inch of that type of material on the left side of my throat. It feels like I'm wearing a tight collar there.
Taste is almost completely returned. Bananas still don't have much of a sweet taste and tomatoes seem to be missing some element of sweetness. Sweet seems to be the last taste to return.
My swallowing is a lot better and I'm a lot better at "fixing" things that didn't get swallowed right. I'm still uncomfortable eating in public, but at home, I can eat quite a variety of foods. Beef (other than burger with sauces) seems to be the toughest and is probably off my diet for life. Pork works pretty well, even the drier cuts. Chicken is a struggle and I've switched from breasts to thighs. Fish is great.
Energy levels, stamina, and strength seem to be back to what they were before this happened. I still sleep most of the day Saturday. I don't know if that's a result of the cancer and treatment, or if it's more related to getting older.
I'm starting to get an idea of some things that might affect me the rest of my life. I've got shingles in the area where the surgery was done. Shingles is associated with a compromised immune system. A year ago my immune system wasn't compromised - it was gone. The entire lymph system on the right side of my neck is gone, which doesn't leave me much immune capability in that area.
I've also got a rather innocuous and common fungus which has gotten a little overactive in that area. It's not really noticeable. It just makes my face a little reddish and gives me some slightly itchy spots in my scalp behind my ear, which is an affected area. Everything is pretty much numb behind my right ear.
I'm slowly getting some nerve regeneration working. I think the nerves to my right vocal cord are almost working normally from time to time. Every once in a while, I almost sound like I used to sound. I actually sang an octave and more or less hit all the notes. Good singers usually have about 3 octaves of range. I used to have 2. Now I'm thrilled to have one where I can almost hit the notes.
I've still got numbness from around my armpit on an angle to the top of my sternum, then up just to the right of my chin, then along my jaw line to a little behind my ear, and then up a little.
As I get more nerves working in the area of my shoulder, my old shoulder problem is becoming painful again. I'm having that looked at. For those friends of mine who know that I throw darts, I still don't have a good sense of my arm and shoulder positions when I throw darts. I'm totally incapable of sensing a bad arm or shoulder position while throwing darts. The exact same feel for 2 throws can result in darts about 6 inches apart on the board.
The biggest change has been my ability to maintain a good attitude. Maintaining a good attitude at work is pretty easy. I try to be constantly upbeat, positive, and enthusiastic. That's so easy after last summer. There's nothing work can throw at me that even approaches what life threw at me a year ago.
I'm really doing great. I can't eat everything. I have to have sauces with everything I eat. I have to have quite a bit of water with meals - some of it to wash down food - especially meats. My saliva production is up. My mouth doesn't get as dry as an unused Kleenex over night and I usually have enough saliva to swallow the first 5 or 6 bites of a meal normally. I think my teeth will survive - saliva loss gives me the same condition that causes meth users to lose their teeth.
Looking back, that was a really miserable time. My radiation oncologist told me nothing would get worse because it wasn't possible for my nerves to register more pain and they were likely to give up reporting pain because it did no good. That, and a brief break from radiation and chemo helped a bit. Then they changed angles a bit with the radiation and added another entire section of my throat to the area that was already reporting the maximum possible pain.
I was too weak to sit up on a bench after getting my radiation treatments. I went into survival mode. It was just live another day. Do that one day at a time and things would get better. I just flat out didn't care about anything except the fact that I was still alive. That was the only thing that mattered.
At the time I didn't realize how far I had deteriorated or how bad things really were. As long as I was alive, I was in good shape. that's how you get to feel after being maintained on the very edge of death for a month.
So, where am I a year after that episode? Well, first, when I review this blog, I'm amazed at how well I cleaned everything up, pretty much sugar-coated it, and kept it very upbeat and positive.
The improvements have been dramatic. I'm almost to the point where anything remaining will be permanent. September is when I should be at "full recovery". Other theories speculate that damage from radiation can continue for years.
The biggest remaining radiation damage involves transforming muscle tissue into fibrous tissue. Long-term radiation damage continues that process for some time. It appears to be based on the individual for how long it lasts. In my case, I'm still getting a build-up of fibrous material and scar tissue in my throat. I'd guess there's probably a cubic inch of that type of material on the left side of my throat. It feels like I'm wearing a tight collar there.
Taste is almost completely returned. Bananas still don't have much of a sweet taste and tomatoes seem to be missing some element of sweetness. Sweet seems to be the last taste to return.
My swallowing is a lot better and I'm a lot better at "fixing" things that didn't get swallowed right. I'm still uncomfortable eating in public, but at home, I can eat quite a variety of foods. Beef (other than burger with sauces) seems to be the toughest and is probably off my diet for life. Pork works pretty well, even the drier cuts. Chicken is a struggle and I've switched from breasts to thighs. Fish is great.
Energy levels, stamina, and strength seem to be back to what they were before this happened. I still sleep most of the day Saturday. I don't know if that's a result of the cancer and treatment, or if it's more related to getting older.
I'm starting to get an idea of some things that might affect me the rest of my life. I've got shingles in the area where the surgery was done. Shingles is associated with a compromised immune system. A year ago my immune system wasn't compromised - it was gone. The entire lymph system on the right side of my neck is gone, which doesn't leave me much immune capability in that area.
I've also got a rather innocuous and common fungus which has gotten a little overactive in that area. It's not really noticeable. It just makes my face a little reddish and gives me some slightly itchy spots in my scalp behind my ear, which is an affected area. Everything is pretty much numb behind my right ear.
I'm slowly getting some nerve regeneration working. I think the nerves to my right vocal cord are almost working normally from time to time. Every once in a while, I almost sound like I used to sound. I actually sang an octave and more or less hit all the notes. Good singers usually have about 3 octaves of range. I used to have 2. Now I'm thrilled to have one where I can almost hit the notes.
I've still got numbness from around my armpit on an angle to the top of my sternum, then up just to the right of my chin, then along my jaw line to a little behind my ear, and then up a little.
As I get more nerves working in the area of my shoulder, my old shoulder problem is becoming painful again. I'm having that looked at. For those friends of mine who know that I throw darts, I still don't have a good sense of my arm and shoulder positions when I throw darts. I'm totally incapable of sensing a bad arm or shoulder position while throwing darts. The exact same feel for 2 throws can result in darts about 6 inches apart on the board.
The biggest change has been my ability to maintain a good attitude. Maintaining a good attitude at work is pretty easy. I try to be constantly upbeat, positive, and enthusiastic. That's so easy after last summer. There's nothing work can throw at me that even approaches what life threw at me a year ago.
I'm really doing great. I can't eat everything. I have to have sauces with everything I eat. I have to have quite a bit of water with meals - some of it to wash down food - especially meats. My saliva production is up. My mouth doesn't get as dry as an unused Kleenex over night and I usually have enough saliva to swallow the first 5 or 6 bites of a meal normally. I think my teeth will survive - saliva loss gives me the same condition that causes meth users to lose their teeth.
Friday, June 25, 2010
Goodbye, Thyroid Gland. Hello, Metabolism Roller Coaster
It's just over a year since I started radiation and chemo. It was about one year ago that my liver quit, I got pulled off of all my pain meds, my throat hurt so bad that I couldn't eat at all, and I lost 15 pounds in 2 weeks.
It wasn't as bad this year. Last week I lost 5 pounds in 4 days. I upped my food intake until I stopped that and I've recovered most of the weight. I'm getting about 2,500 to 3,000 calories a day now.
My doctor recently put me on a thyroid supplement. Weight loss is associated with both too much and not enough thyroid. In my case, it was not enough. It's kind of interesting that the blood tests for thyroid don't measure thyroid levels, they measure the levels of a chemical your brain produces to signal the thyroid glands to produce more thyroid. A high number on the tests indicates not enough thyroid. My number was 3 times as high as the normal level.
The surgery took the thyroid and parathyroid on the right side. The glands on the left were not touched. I asked why it took this long to have that problem. There doesn't seem to be an absolute answer. Radiation kills thyroid glands. That's the treatment for Graves' Disease (runaway or excess thyroid production). My thyroid glands were not in the direct line of my radiation, but they probably took enough radiation to slowly kill them and they've just now died. The radiation used in cancer treatment is gamma radiation, which is what kills people from nuclear fallout. The total effects aren't fully seen for some period of time.
Until we get the med levels right, I get to eat all kids of things (like milk shakes) that aren't in most people's diets.
I've been able to add sandwiches to the growing list of foods I can eat. There's a bit of a twist, though. Mayonnaise and catsup are both a little unpleasant from the burning effect they have. I guess it's the acid in the vinegar. I eat my sandwiches with spaghetti sauce. That's pretty tasty and provides enough moisture that I can handle the bread and meat. Well, that and a glass of water provides enough moisture.
I don't need as much water to eat as I used to. I can generally get a decent-sized meal down with just 8 ounces of water now.
I went out for lunch with some co-workers today. It's my last day in the department I was in, so a group of us from work went to lunch together. This is only my third time to eat outside of my house in over a year. Today I had the courage to sit between two people where I wouldn't have easy access to leave if I had a problem.
One time I thought it might get embarrassing as I had a problem clearing some food that was sticking in my throat. I was able to resolve that without any one noticing I had a problem. A couple of months ago, that would have required some rather disturbing sounds, possibly some coughing, and possibly expelling the food out of my mouth. Without the option of leaving the table and heading for the restroom, I was able to resolve it unnoticed. That was a big help and gave me a lot of confidence for eating in public more often.
It wasn't as bad this year. Last week I lost 5 pounds in 4 days. I upped my food intake until I stopped that and I've recovered most of the weight. I'm getting about 2,500 to 3,000 calories a day now.
My doctor recently put me on a thyroid supplement. Weight loss is associated with both too much and not enough thyroid. In my case, it was not enough. It's kind of interesting that the blood tests for thyroid don't measure thyroid levels, they measure the levels of a chemical your brain produces to signal the thyroid glands to produce more thyroid. A high number on the tests indicates not enough thyroid. My number was 3 times as high as the normal level.
The surgery took the thyroid and parathyroid on the right side. The glands on the left were not touched. I asked why it took this long to have that problem. There doesn't seem to be an absolute answer. Radiation kills thyroid glands. That's the treatment for Graves' Disease (runaway or excess thyroid production). My thyroid glands were not in the direct line of my radiation, but they probably took enough radiation to slowly kill them and they've just now died. The radiation used in cancer treatment is gamma radiation, which is what kills people from nuclear fallout. The total effects aren't fully seen for some period of time.
Until we get the med levels right, I get to eat all kids of things (like milk shakes) that aren't in most people's diets.
I've been able to add sandwiches to the growing list of foods I can eat. There's a bit of a twist, though. Mayonnaise and catsup are both a little unpleasant from the burning effect they have. I guess it's the acid in the vinegar. I eat my sandwiches with spaghetti sauce. That's pretty tasty and provides enough moisture that I can handle the bread and meat. Well, that and a glass of water provides enough moisture.
I don't need as much water to eat as I used to. I can generally get a decent-sized meal down with just 8 ounces of water now.
I went out for lunch with some co-workers today. It's my last day in the department I was in, so a group of us from work went to lunch together. This is only my third time to eat outside of my house in over a year. Today I had the courage to sit between two people where I wouldn't have easy access to leave if I had a problem.
One time I thought it might get embarrassing as I had a problem clearing some food that was sticking in my throat. I was able to resolve that without any one noticing I had a problem. A couple of months ago, that would have required some rather disturbing sounds, possibly some coughing, and possibly expelling the food out of my mouth. Without the option of leaving the table and heading for the restroom, I was able to resolve it unnoticed. That was a big help and gave me a lot of confidence for eating in public more often.
Friday, June 11, 2010
Moe - Status Unknown
Moe got out of the hospital quick! He had his surgery Thursday. I know I didn't really want visitors the first couple of days after my surgery, so I waited until Tuesday to go see Moe. He was already out of the hospital.
I know they won't let you leave the hospital until you can eat. Moe couldn't eat before he went in. I'm certain his throat didn't get better from the surgery, so he's probably on a feeding tube and recovering.
The other surprising thing is that he wasn't damaged badly during the surgery or he wouldn't have healed enough to leave so quickly. I don't know the surgery techniques for all the variations of this cancer, but it's generally radical if the cancer has spread.
Moe didn't get the radical surgery. It's possible that his cancer was so localized to his larynx that they were able to remove everything with a relatively minor surgery. It's also possible that his cancer had spread and there was either no way to remove everything or there was no point in doing that.
I may never know. Like many cancer patients, Moe has pretty much disappeared. His phone no longer works. He's moved in with his wife's daughter and I don't have that phone number. Moe cut off every method I have of contacting him. I suspect he knew he was doing that. He will get in touch with me if he wants to see me again. That may sound odd, but that's a legitimate thought when you're facing a bad result from cancer.
I know they won't let you leave the hospital until you can eat. Moe couldn't eat before he went in. I'm certain his throat didn't get better from the surgery, so he's probably on a feeding tube and recovering.
The other surprising thing is that he wasn't damaged badly during the surgery or he wouldn't have healed enough to leave so quickly. I don't know the surgery techniques for all the variations of this cancer, but it's generally radical if the cancer has spread.
Moe didn't get the radical surgery. It's possible that his cancer was so localized to his larynx that they were able to remove everything with a relatively minor surgery. It's also possible that his cancer had spread and there was either no way to remove everything or there was no point in doing that.
I may never know. Like many cancer patients, Moe has pretty much disappeared. His phone no longer works. He's moved in with his wife's daughter and I don't have that phone number. Moe cut off every method I have of contacting him. I suspect he knew he was doing that. He will get in touch with me if he wants to see me again. That may sound odd, but that's a legitimate thought when you're facing a bad result from cancer.
Sunday, May 30, 2010
I Think It's Good-Bye, Moe
A great friend of mine dropped by today. Jerry Davy - everybody knows him as Moe.
Some background is in order here. Moe is a drummer. Best drummer I've every played with. He's played with Oscar Peterson, Herbie Hancock, and some other jazz greats. Moe taught me more about music in the years I played with him than anyone else I've met in my life.
Moe was a "do anything" handyman. A couple of years ago he helped me do some work on my house. Moe's idea of caulking was to do it so good that no critters would get into the house - and he meant bugs. I've lived in this house since it was new and I've never had as few bugs as after Moe showed me and helped me seal it up. Fewer bugs means fewer spiders, and I almost never see any in the house since we sealed it up.
Okay, one more story before I get into Moe's visit today. Pat McJimsey was a local music hero. Awesome blues guitar player and a very good blues and jazz singer. I play guitar and used to sing, but I'm not awesome.
Moe and I went to a jam that Pat hosted at The Spot. The place was an absolute dive, but it had character and personified the blues that used to be played in there. Every local guitar player's fear was to have to follow Pat on stage. Pat's band opened the gig, and I was the first guitar player called up for the next set. Moe and I had brought 20 or 30 of our friends with us. I did vocals and guitar and the supporting musicians we had were outstanding. We nailed the set.
Our friends were on the rowdy side and out to have some fun, so they went nuts. We got standing ovation after standing ovation. The place was exploding with noise from the crowd and absolutely on fire with excitement. We walked off the stage to yet another standing ovation. By now, it wasn't just our friends, it was the entire bar - probably 50 or 60 people.
Pat had gotten polite applause for his set, and he was not happy. Pat was REALLY not happy. For one night, I had owned him. He never let me on a stage where he had any control ever again. You had to know Pat to really understand this, but that was the best compliment Pat could ever have given another musician.
In addition to all that, Moe threw darts and was a sub for me from time to time. I think I've got my friendship with Moe put in perspective, so here's the actual reason this is here.
Moe has cancer. I saw him about 6 weeks ago and he was having some problems with his throat. He asked some questions about my cancer. I asked him some questions about what he was experiencing. He sometimes coughed past normal coughing and wanted privacy when he dealt with that. From what he said and what I observed, I thought he probably had cancer in his neck or throat.
Moe is 76, on Medicare, and the sole caregiver for his disabled wife, who has had some strokes, and has medical conditions that leave her basically waiting to die. Moe waited until there was no option but to see a doctor.
He has the same type of cancer I had, but the apparent spread of his is scary. I had a big lump. Moe never got that - he got several little lumps. Moe dropped by to talk to me today. He's going in for surgery Thursday (5 days from now) and wanted to know what to expect. I think he came over to say goodbye.
He's lost 30 pounds in the last 2 weeks. His throat is too sore for him to eat. My throat never got sore before I began treatment. We were discussing radiation and I was warning him of the residual damage. He's already lost saliva production, can't taste food, and can't eat. The only likely reason to lose saliva production before surgery and radiation is if the cancer has already killed the saliva glands.
Moe's cancer is on his vocal cords and in both sides of his neck. It also seems to be in his saliva glands. I suspect it will be found pretty much everywhere in his neck once they open him up.
This is going to seem cold and heartless, but once you've faced and considered the end of your time on this Earth, some taboos go away. My last words to Moe were that if he has anything in his life that has to be taken care of before Thursday, to get it done.
What's more sad than Moe's situation is that my friends who still smoke will pretty much ignore this because it's something that happens to "other people". Once it happens to you, the chances of it happening to you just hit 100%. Don't get caught off guard like I did. Moe quit smoking 6 weeks ago when he noticed the first symptoms of the cancer. The first symptoms didn't even seem to be anything that needed medical attention.
Some background is in order here. Moe is a drummer. Best drummer I've every played with. He's played with Oscar Peterson, Herbie Hancock, and some other jazz greats. Moe taught me more about music in the years I played with him than anyone else I've met in my life.
Moe was a "do anything" handyman. A couple of years ago he helped me do some work on my house. Moe's idea of caulking was to do it so good that no critters would get into the house - and he meant bugs. I've lived in this house since it was new and I've never had as few bugs as after Moe showed me and helped me seal it up. Fewer bugs means fewer spiders, and I almost never see any in the house since we sealed it up.
Okay, one more story before I get into Moe's visit today. Pat McJimsey was a local music hero. Awesome blues guitar player and a very good blues and jazz singer. I play guitar and used to sing, but I'm not awesome.
Moe and I went to a jam that Pat hosted at The Spot. The place was an absolute dive, but it had character and personified the blues that used to be played in there. Every local guitar player's fear was to have to follow Pat on stage. Pat's band opened the gig, and I was the first guitar player called up for the next set. Moe and I had brought 20 or 30 of our friends with us. I did vocals and guitar and the supporting musicians we had were outstanding. We nailed the set.
Our friends were on the rowdy side and out to have some fun, so they went nuts. We got standing ovation after standing ovation. The place was exploding with noise from the crowd and absolutely on fire with excitement. We walked off the stage to yet another standing ovation. By now, it wasn't just our friends, it was the entire bar - probably 50 or 60 people.
Pat had gotten polite applause for his set, and he was not happy. Pat was REALLY not happy. For one night, I had owned him. He never let me on a stage where he had any control ever again. You had to know Pat to really understand this, but that was the best compliment Pat could ever have given another musician.
In addition to all that, Moe threw darts and was a sub for me from time to time. I think I've got my friendship with Moe put in perspective, so here's the actual reason this is here.
Moe has cancer. I saw him about 6 weeks ago and he was having some problems with his throat. He asked some questions about my cancer. I asked him some questions about what he was experiencing. He sometimes coughed past normal coughing and wanted privacy when he dealt with that. From what he said and what I observed, I thought he probably had cancer in his neck or throat.
Moe is 76, on Medicare, and the sole caregiver for his disabled wife, who has had some strokes, and has medical conditions that leave her basically waiting to die. Moe waited until there was no option but to see a doctor.
He has the same type of cancer I had, but the apparent spread of his is scary. I had a big lump. Moe never got that - he got several little lumps. Moe dropped by to talk to me today. He's going in for surgery Thursday (5 days from now) and wanted to know what to expect. I think he came over to say goodbye.
He's lost 30 pounds in the last 2 weeks. His throat is too sore for him to eat. My throat never got sore before I began treatment. We were discussing radiation and I was warning him of the residual damage. He's already lost saliva production, can't taste food, and can't eat. The only likely reason to lose saliva production before surgery and radiation is if the cancer has already killed the saliva glands.
Moe's cancer is on his vocal cords and in both sides of his neck. It also seems to be in his saliva glands. I suspect it will be found pretty much everywhere in his neck once they open him up.
This is going to seem cold and heartless, but once you've faced and considered the end of your time on this Earth, some taboos go away. My last words to Moe were that if he has anything in his life that has to be taken care of before Thursday, to get it done.
What's more sad than Moe's situation is that my friends who still smoke will pretty much ignore this because it's something that happens to "other people". Once it happens to you, the chances of it happening to you just hit 100%. Don't get caught off guard like I did. Moe quit smoking 6 weeks ago when he noticed the first symptoms of the cancer. The first symptoms didn't even seem to be anything that needed medical attention.
Tuesday, May 11, 2010
Turning A Recovery Corner
Oops. It's been two months since my last update. There hasn't been much to report. CAT scan, PET scan, blood work, multiple doctor's exams - all indicate not a bit of cancer in my body. This isn't remission - it's elimination. My surgeon has switched from looking for cancer to looking at long-term damage and how to manage that. Not fix - manage. So, I'm goig to take a look at what aappear to be the permanent effects.
May as well go head to toe - starting with head.
Hair - My hair has more body than before chemo and radiation. I never lost my hair but the hairs got real thin and wispy. Now my hair has more body than it's had for years. It cannot be combed, so I sort of let it do what it's going to do. Call it the David Letterman hair style.
Right eye - A number of things combined to make it comfortable to hold my head way forward and my chin ducked. That's a pretty stooped appearance I'm trying to avoid. If I hold my head in the right position for good posture and appearance, the scar tissue causes a pull in my face that goes all the way up to my right eye.
Posture - I've got extra weight on the left of my throat. That problem is getting worse. There's a lot of stuff there that was killed by the radiation. My body is trying to repair or fix the damaged areas. It can't do that, but it tries and builds fibrous stuff in the damaged areas. The excess stuff that's there is growing. It might eventually go away, but that will be so slow that I won't notice it. The extra weight there and the big scar on the right of my neck makes it an effort to hold my head up, instead of too far forward. I have to concentrate on holding my head up, keep working on stretching the scar tissue, and get to the point where it's natural to hold my head in the right position. Spinal damage is the result if I fail that.
Teeth - That was a concern, but it looks like I will get to keep my teeth. The dry mouth from dead saliva glands has the same results as dry mouth from doing meth. I have the same problem with my teeth that causes meth heads to lose theirs. So far I'm doing fine.
Saliva - This is the biggie. My radiation oncologist did everything he could to save my saliva glands, but I didn't do well with radiation. I'm pretty much down to one saliva gland out of the six God gave me. There is still a possibility that one or more non-responding glands might be alive and start producing saliva again, but that is getting to be pretty unlikely. Limited saliva makes it difficult to taste or swallow food. My mouth gets so dry over night that i can reach inside my mouth and scrape out dried saliva with my fingers. It is so dry that it's not even sticky. It just rolls up into little balls between my fingers. I also bleed from my mouth or throat fairly regularly when it gets totally dry overnight. This is likely to be permanent.
Eating - This is related to saliva, but deserves a paragraph. My menu consists of about 8 or maybe 10 meals that I can actually eat. Hamburger is the only beef I can eat. That's so difficult that I dislike attempting it, but I have to if I want any variety in my food at all. It takes an incredibly long time to eat anything and the amounts I can eat at any one time are very small. I probably spend an extra hour a day eating, compared to the rest of the population. Eating has become something I have to do to survive rather than something to be enjoyed. Eating in public and eating in restaurants is something I have to consider carefully before attempting. You don't want to listen to me if I get something stuck that I'm trying to swallow. The inability to eat in public really trashes a social life. This is likely to be permanent.
Neck and throat - I'm glad I'm not here for the beauty pageant. The surgery scar is no biggie. The scar tissue and buildup of fibrous tissue from radiation damage on the other side of my throat have created some large lumps. It's only aesthetics, but it is unsightly. It's the kind of thing that if you notice it, you can't avoid looking at it from that point on and you have to pretend you didn't notice and aren't at least a bit disgusted by the appearance. The time frame for detectable improvement is in years.
Lungs - Clean bill of health.
Stomach - The last thing to heal is my stomach. I've had the feeding tube out for about a month and the hole in my stomach still hasn't closed. The hole in the skin closed for about ten days and I had some external healing. Then the gastric acid coming out of my stomach ate its way through and opened a new hole to the exterior. Just in case you're wondering - yes, it hurts and I could feel the stomach acid literally eating its way through my skin. The only possibility other than natural healing is surgery to get to the stomach and then sew up the stomach. That's more major than any part of the process of getting and removing a feeding tube, so it's a last resort. I'm supposed to wait at least another month before even considering that option. So, I'm still soaking shirts when my stomach leaks and feeling the effects of pouring acid over really raw skin when that happens.
I don't think anything south of the stomach has been affected.
The big problem is that it's all I can do to force myself to eat enough to maintain my weight. A lot of things taste so bad that really working to get them swallowed limits my desire to eat them. That's knocked out a lot of things I used to enjoy. A lot of things have no taste at all and the texture of the food is disgusting without flavor. I can force that stuff down for a while, but it requires a break. As limited as I am with food options, breaks from undesirable foods that I can tolerate eating aren't always available.
It requires about a pint of water to assist in swallowing a very small meal. That is filling and limits amounts I can eat at any one time. A small meal and 16 ounces of water almost guarantees enough pressure in my stomach to break everything open from the feeding tube. I try to avoid that, so I'm eating really small meals right now and losing some weight.
If there's a long-term serious bummer, it's food. The prospect of an extremely limited diet for the remainder of a lifetime, coupled with the social cost of not being able to eat in social settings is disturbing. A life of only being able to eat at home and having extremely limited food options is a problem. I can see how eating could become so boring and undesirable that it could become a survival issue. I don't enjoy eating. It's like paying taxes. It's something I do in order to live here.
May as well go head to toe - starting with head.
Hair - My hair has more body than before chemo and radiation. I never lost my hair but the hairs got real thin and wispy. Now my hair has more body than it's had for years. It cannot be combed, so I sort of let it do what it's going to do. Call it the David Letterman hair style.
Right eye - A number of things combined to make it comfortable to hold my head way forward and my chin ducked. That's a pretty stooped appearance I'm trying to avoid. If I hold my head in the right position for good posture and appearance, the scar tissue causes a pull in my face that goes all the way up to my right eye.
Posture - I've got extra weight on the left of my throat. That problem is getting worse. There's a lot of stuff there that was killed by the radiation. My body is trying to repair or fix the damaged areas. It can't do that, but it tries and builds fibrous stuff in the damaged areas. The excess stuff that's there is growing. It might eventually go away, but that will be so slow that I won't notice it. The extra weight there and the big scar on the right of my neck makes it an effort to hold my head up, instead of too far forward. I have to concentrate on holding my head up, keep working on stretching the scar tissue, and get to the point where it's natural to hold my head in the right position. Spinal damage is the result if I fail that.
Teeth - That was a concern, but it looks like I will get to keep my teeth. The dry mouth from dead saliva glands has the same results as dry mouth from doing meth. I have the same problem with my teeth that causes meth heads to lose theirs. So far I'm doing fine.
Saliva - This is the biggie. My radiation oncologist did everything he could to save my saliva glands, but I didn't do well with radiation. I'm pretty much down to one saliva gland out of the six God gave me. There is still a possibility that one or more non-responding glands might be alive and start producing saliva again, but that is getting to be pretty unlikely. Limited saliva makes it difficult to taste or swallow food. My mouth gets so dry over night that i can reach inside my mouth and scrape out dried saliva with my fingers. It is so dry that it's not even sticky. It just rolls up into little balls between my fingers. I also bleed from my mouth or throat fairly regularly when it gets totally dry overnight. This is likely to be permanent.
Eating - This is related to saliva, but deserves a paragraph. My menu consists of about 8 or maybe 10 meals that I can actually eat. Hamburger is the only beef I can eat. That's so difficult that I dislike attempting it, but I have to if I want any variety in my food at all. It takes an incredibly long time to eat anything and the amounts I can eat at any one time are very small. I probably spend an extra hour a day eating, compared to the rest of the population. Eating has become something I have to do to survive rather than something to be enjoyed. Eating in public and eating in restaurants is something I have to consider carefully before attempting. You don't want to listen to me if I get something stuck that I'm trying to swallow. The inability to eat in public really trashes a social life. This is likely to be permanent.
Neck and throat - I'm glad I'm not here for the beauty pageant. The surgery scar is no biggie. The scar tissue and buildup of fibrous tissue from radiation damage on the other side of my throat have created some large lumps. It's only aesthetics, but it is unsightly. It's the kind of thing that if you notice it, you can't avoid looking at it from that point on and you have to pretend you didn't notice and aren't at least a bit disgusted by the appearance. The time frame for detectable improvement is in years.
Lungs - Clean bill of health.
Stomach - The last thing to heal is my stomach. I've had the feeding tube out for about a month and the hole in my stomach still hasn't closed. The hole in the skin closed for about ten days and I had some external healing. Then the gastric acid coming out of my stomach ate its way through and opened a new hole to the exterior. Just in case you're wondering - yes, it hurts and I could feel the stomach acid literally eating its way through my skin. The only possibility other than natural healing is surgery to get to the stomach and then sew up the stomach. That's more major than any part of the process of getting and removing a feeding tube, so it's a last resort. I'm supposed to wait at least another month before even considering that option. So, I'm still soaking shirts when my stomach leaks and feeling the effects of pouring acid over really raw skin when that happens.
I don't think anything south of the stomach has been affected.
The big problem is that it's all I can do to force myself to eat enough to maintain my weight. A lot of things taste so bad that really working to get them swallowed limits my desire to eat them. That's knocked out a lot of things I used to enjoy. A lot of things have no taste at all and the texture of the food is disgusting without flavor. I can force that stuff down for a while, but it requires a break. As limited as I am with food options, breaks from undesirable foods that I can tolerate eating aren't always available.
It requires about a pint of water to assist in swallowing a very small meal. That is filling and limits amounts I can eat at any one time. A small meal and 16 ounces of water almost guarantees enough pressure in my stomach to break everything open from the feeding tube. I try to avoid that, so I'm eating really small meals right now and losing some weight.
If there's a long-term serious bummer, it's food. The prospect of an extremely limited diet for the remainder of a lifetime, coupled with the social cost of not being able to eat in social settings is disturbing. A life of only being able to eat at home and having extremely limited food options is a problem. I can see how eating could become so boring and undesirable that it could become a survival issue. I don't enjoy eating. It's like paying taxes. It's something I do in order to live here.
Sunday, March 07, 2010
Feeling Better and BETTER!
Words can hardly express how much better I'm feeling. It applies to everything. I feel better about life, better about work, better about what I do, better about being around people.
When I look back at how long the feeling better process has been going on, it doesn't seem possible. That's when I realize just how far down I had to have been. I never admitted it or accepted it at the time, but I must have been at or near death bed status. I don't see any other way I could have such a long run at feeling better. It's made recovering from pneumonia seem like nothing.
I can eat almost anything by now. Some things are tougher than others, everything requires extra liquid while I eat, some things require repeated "private" moments to clear things that get stuck, and eating in public is still something to work for. It's not pleasant to share a meal with me.
Taste is shaky. I think I tasted something sweet today for just a few bites, but I'm not certain.
It seems that 10 hours of sleep is all I need by now. It used to be 14, then 12 - 14. Now I think 10 will work. That would give me 2 extra hours a day. That's 14 hours a week. My schedule has been 1 or 2 basketball games a week, one night with friends, work, sleep, and eat - and that's all the time I had. If I can get an extra 14 hours, it's going to seem like - well, it's not going to be enough. There's so much I want to do.
I still have dead spots in my throat. I still have numb spots on my neck that make me hesitant to shave daily. I think I've regained the range of motion I'm going to have in my shoulder. That's increased quite a bit lately. I've still got numb spots that extend down onto my chest. It still feels like I've got a tight bandage on my neck in an area about 1-1/2" x 3". There's a tendon that runs through my neck that survived the surgery and treatments, but it's not connected the way it was. It's kind of a major one that's used on almost any arm movements. Maybe that's why I've had some difficulty detecting the position of my right arm.
If September is my complete recovery date and I keep feeling better between now and then - look out! I'm starting to have a tolerable attitude toward the difficult eating and loss of taste. I never thought that would happen. It scares me to think of what else I might find acceptable and even enjoy in another 6 months.
When I look back at how long the feeling better process has been going on, it doesn't seem possible. That's when I realize just how far down I had to have been. I never admitted it or accepted it at the time, but I must have been at or near death bed status. I don't see any other way I could have such a long run at feeling better. It's made recovering from pneumonia seem like nothing.
I can eat almost anything by now. Some things are tougher than others, everything requires extra liquid while I eat, some things require repeated "private" moments to clear things that get stuck, and eating in public is still something to work for. It's not pleasant to share a meal with me.
Taste is shaky. I think I tasted something sweet today for just a few bites, but I'm not certain.
It seems that 10 hours of sleep is all I need by now. It used to be 14, then 12 - 14. Now I think 10 will work. That would give me 2 extra hours a day. That's 14 hours a week. My schedule has been 1 or 2 basketball games a week, one night with friends, work, sleep, and eat - and that's all the time I had. If I can get an extra 14 hours, it's going to seem like - well, it's not going to be enough. There's so much I want to do.
I still have dead spots in my throat. I still have numb spots on my neck that make me hesitant to shave daily. I think I've regained the range of motion I'm going to have in my shoulder. That's increased quite a bit lately. I've still got numb spots that extend down onto my chest. It still feels like I've got a tight bandage on my neck in an area about 1-1/2" x 3". There's a tendon that runs through my neck that survived the surgery and treatments, but it's not connected the way it was. It's kind of a major one that's used on almost any arm movements. Maybe that's why I've had some difficulty detecting the position of my right arm.
If September is my complete recovery date and I keep feeling better between now and then - look out! I'm starting to have a tolerable attitude toward the difficult eating and loss of taste. I never thought that would happen. It scares me to think of what else I might find acceptable and even enjoy in another 6 months.
Monday, February 22, 2010
I'm eating normal food
Well, mostly. I'm down to 600 calories a day from tube feedings and I'm gaining just a bit of weight, so I can start planning to cut that back.
Here's the biggie. For the first time in a year I was able to go to the grocery store and buy food that both Robby and I could eat and plan a week's worth of meals out of things we regularly ate before all this popped up.
This week's menu:
Chicken breasts in mushroom sauce with peas and mashed potatoes with mushroom gravy.
Ham and scalloped potatoes.
Pork chops in mushroom sauce with green and kidney beans and mashed potatoes with mushroom gravy.
A chowder similar to lightly seasoned chili with corn and bacon thrown in.
There is a theme. I bought 5 cans of mushroom soup on my grocery store run. I'm learning to eat using sauces and water to assist in swallowing. The natural reaction is to just swallow sauces and liquids. I'm learning to use them and incorporate them into foods that are difficult to swallow with limited saliva.
I'm getting better at what I call "eating in public". When I started eating again, I had to clear significant amounts of food from my airways. That makes a rather unpleasant sound that's not suitable for eating in public. I had to eat in a room separate from Robby because of the sounds I had to make. I'm getting past that and can eat food as dry as chicken breasts without offending those near me.
My recovery seems painfully slow, but when I look back even as recent as 4 to 6 weeks, the progress is amazing. I don't know if I ever really had a grasp of how much recovery I needed. Maybe that's best.
I'm also starting to taste things a bit better. Some familiar tastes are coming back and it's a pleasure to experience them again. Taste is also a factor of the liquid associated with the food. Saliva normally carries the taste of food to all the taste buds. I'm learning to use liquid with food to both assist in proper swallowing and tasting.
I will end up eating differently than most people. I'm learning that now and making good progress. I never thought I'd have to learn to eat, but that's pretty much what's required. An odd thing is that I don't get hungry. I think my stomach was shrunk long enough that that sensation just went away.
Sometimes it's hard to eat when chewing and swallowing are both challenging, there's little taste to the food, and I have absolutely no hunger. At those times, I just eat because I know I need to do it.
Here's the biggie. For the first time in a year I was able to go to the grocery store and buy food that both Robby and I could eat and plan a week's worth of meals out of things we regularly ate before all this popped up.
This week's menu:
Chicken breasts in mushroom sauce with peas and mashed potatoes with mushroom gravy.
Ham and scalloped potatoes.
Pork chops in mushroom sauce with green and kidney beans and mashed potatoes with mushroom gravy.
A chowder similar to lightly seasoned chili with corn and bacon thrown in.
There is a theme. I bought 5 cans of mushroom soup on my grocery store run. I'm learning to eat using sauces and water to assist in swallowing. The natural reaction is to just swallow sauces and liquids. I'm learning to use them and incorporate them into foods that are difficult to swallow with limited saliva.
I'm getting better at what I call "eating in public". When I started eating again, I had to clear significant amounts of food from my airways. That makes a rather unpleasant sound that's not suitable for eating in public. I had to eat in a room separate from Robby because of the sounds I had to make. I'm getting past that and can eat food as dry as chicken breasts without offending those near me.
My recovery seems painfully slow, but when I look back even as recent as 4 to 6 weeks, the progress is amazing. I don't know if I ever really had a grasp of how much recovery I needed. Maybe that's best.
I'm also starting to taste things a bit better. Some familiar tastes are coming back and it's a pleasure to experience them again. Taste is also a factor of the liquid associated with the food. Saliva normally carries the taste of food to all the taste buds. I'm learning to use liquid with food to both assist in proper swallowing and tasting.
I will end up eating differently than most people. I'm learning that now and making good progress. I never thought I'd have to learn to eat, but that's pretty much what's required. An odd thing is that I don't get hungry. I think my stomach was shrunk long enough that that sensation just went away.
Sometimes it's hard to eat when chewing and swallowing are both challenging, there's little taste to the food, and I have absolutely no hunger. At those times, I just eat because I know I need to do it.
Thursday, February 04, 2010
Contact Your State Reps - Pass This
http://www.ksn.com/news/local/story/Bill-proposes-legalizing-medical-marijuana-in/6NECExD14UqKrMZE4IIB5A.cspx
Links don't work right in this blog. You're going to have to copy and paste this one.
I know this is going to be controversial, but this needs to happen. Stoners aren't real productive members of society because they tend to forget what's really going on and spend their stoned time sitting around with not much concept of reality. They are able to ignore reality and enjoy a world where the only thing really significant is whatever happens to be entertaining them at that moment.
Now, think in terms of a cancer patient who is staring death in the face and watching their life crumble around them as the effects of the chemo and radiation destroy their lives as they knew them.
I was one of the fortunate ones who had a really positive long-term diagnosis going into the nastiness of the chemo and radiation. Even with that, there were times when the best thing that could have possibly happened for me was to forget. Even for a moment. Maybe have a laugh or two about something meaningless.
Just give me a chance to forget that I'm fighting for my life and I'm never going to be the same person after that fight is finished. Having to deal with that stuff is just brutal. I would have given anything to be relieved of that for a moment, an hour, a day - anything - just don't make me face that day in and day out for months on end.
The drugs the doctors prescribed for that are some of the most dangerous and addictive drugs in modern medicine. When I was at my worst, I was taking 2 of the 4 drugs Michael Jackson died from - and I wasn't taking the really addictive ones I was getting prescribed. That was just so I could go on from day to day and I had to have the sedatives so that I could stop caring about the damage that the "cure" was doing to me.
I'm not even talking about pain. I'm talking about an unavailable drug (marijuana) that could have let me forget what was going on, could have given me a laugh at something meaningless that isn't even funny, and could have helped me sleep during times when sleep was terrifying, but was my only escape from a truly horrible life.
That would have made my life during the tough months so much better.
Thursday, January 28, 2010
Back to the Feeding Tube
I guess the word setback should be familiar by now. At least the time between setbacks is increasing.
I'm back to getting my food out of a can and through a tube until the docs figure out why my digestive system is freaking out. Step 1 is to go back to what was last known to work, which is the feeding tube. The digestive problems began within days of starting to eat solid food.
Everything else is going pretty well. Sleep is still a major issue, and waking up 4 to 6 times a night because of digestive problems doesn't help any.
Eating was progressing nicely. Swallowing was getting more accurate and stronger. I was to the point where I would have eaten salad in public. No meat other than cocktail shrimp on the salad and not much cheese, but I can go that route.
Taste was another matter. At first it was so great just to be able to eat that I ignored what things tasted like. When it comes to repeating foods and trying to figure out a week's worth of food, taste becomes a factor.
Pretty much everything tastes awful and maybe half the things I used to like are just downright nasty tasting. Some are so bad I can't tolerate them in my mouth. I have to have Robby sample my food, because I'm convinced a lot of it is rotten based on my taste. It's not. The big surprise is pasta, which tastes like rancid vegetable oil.
It's pretty tough to enjoy eating when the taste is nasty, chewing everything to a fine pulp is required and tiring to those muscles, and swallowing presents a risk of some unpleasant throat work to clear food out of my air ways. There are some foods I am avoiding because I really like them and don't want to have any memories of how they would taste now. It's too late for shrimp. They lead the way for tasting spoiled. Gotta love the taste of spoiled seafood. Yummy, yummy.
I'm reminded of the description of a smell I was producing at the worst of the chemo and radiation. Stuff was dying all over inside me and there was something I was producing that I described as smelling like two skunks fighting over a dead fish.
I'm back to getting my food out of a can and through a tube until the docs figure out why my digestive system is freaking out. Step 1 is to go back to what was last known to work, which is the feeding tube. The digestive problems began within days of starting to eat solid food.
Everything else is going pretty well. Sleep is still a major issue, and waking up 4 to 6 times a night because of digestive problems doesn't help any.
Eating was progressing nicely. Swallowing was getting more accurate and stronger. I was to the point where I would have eaten salad in public. No meat other than cocktail shrimp on the salad and not much cheese, but I can go that route.
Taste was another matter. At first it was so great just to be able to eat that I ignored what things tasted like. When it comes to repeating foods and trying to figure out a week's worth of food, taste becomes a factor.
Pretty much everything tastes awful and maybe half the things I used to like are just downright nasty tasting. Some are so bad I can't tolerate them in my mouth. I have to have Robby sample my food, because I'm convinced a lot of it is rotten based on my taste. It's not. The big surprise is pasta, which tastes like rancid vegetable oil.
It's pretty tough to enjoy eating when the taste is nasty, chewing everything to a fine pulp is required and tiring to those muscles, and swallowing presents a risk of some unpleasant throat work to clear food out of my air ways. There are some foods I am avoiding because I really like them and don't want to have any memories of how they would taste now. It's too late for shrimp. They lead the way for tasting spoiled. Gotta love the taste of spoiled seafood. Yummy, yummy.
I'm reminded of the description of a smell I was producing at the worst of the chemo and radiation. Stuff was dying all over inside me and there was something I was producing that I described as smelling like two skunks fighting over a dead fish.
Sunday, January 10, 2010
Refried Beans and Fried Eggs
Well, that's the best things on my diet right now.
I can swallow stuff, but what I can realistically eat is pretty limited. Meat is really tough. Wienies just barely make it. Burger works if there's lots of gravy or other sauce. Pork chops cooked in the top of a crock pot (really tender and moist) work - barely.
Then it gets into taste. Fortunately, I've never been picky on taste. Swallowing is hard work for me, and it seems even harder for things that taste bad. I was hoping that my brand new taste buds would give me great taste, but that's not the way it's working. Right now, fried eggs are the best tasting thing I eat. I pretty much can't taste sweet, and that really messes things up. Here's a bit of a rundown on things I've tried and what I've found from a taste aspect:
Bananas - Disgusting. Knock out the sweet part and they're nasty, but I eat them.
Chocolate - Disappointing. I have to enjoy the bitter aspects.
Shrimp - Great. Plus, my mouth rinse brings out the flavor for extended time.
Budweiser - Tastes like a good import with not great hops.
Tea - The bitter flavors are great and very pronounced.
Coffee - Very strong flavor. Good for enjoying the bitter.
Wienies - Way too spicy. They almost burn my mouth.
Salsa - Yikes! Pace medium is hot, hot, hot! I miss hot sauces.
Berries - Almost inedible. take out the sweet and they're nasty.
Rice - Bland. Just like rice tastes normally.
Long grain and wild rice - Tastes exactly like I would expect dirt to taste.
Cashews - Unbelievable. I can taste the nut butter (like peanut butter) and salt tastes and They're awesome together.
Yogurt - Unpleasant. The worst parts of the "yogurt" taste are turned up to the max and the sweet and fruits added don't have a good taste, but yogurt is still a major part of my diet.
Pork chops - Almost tasteless.
Grilled hamburger - Almost tasteless.
Sausage gravy - Intensely spicy, but tasty.
Most food is unpleasant to taste. That's an improvement over August when I was eating before the pneumonia. Back then I had two taste sensations: 1) Nothing and 2) My mouth is on fire.
I can eat a max of maybe 12 ounces at a time. That will generally require about 16 ounces of water to get everything swallowed. My swallowing mechanism gets tired during that much. Once that happens, I may as well quit trying to eat because I'm swallowing too weakly to get anything down.
Fortunately, my swallowing mechanism gets tired about the wsame time as my stomach gets filled. I'm eating more smaller meals than I used to.
I can swallow stuff, but what I can realistically eat is pretty limited. Meat is really tough. Wienies just barely make it. Burger works if there's lots of gravy or other sauce. Pork chops cooked in the top of a crock pot (really tender and moist) work - barely.
Then it gets into taste. Fortunately, I've never been picky on taste. Swallowing is hard work for me, and it seems even harder for things that taste bad. I was hoping that my brand new taste buds would give me great taste, but that's not the way it's working. Right now, fried eggs are the best tasting thing I eat. I pretty much can't taste sweet, and that really messes things up. Here's a bit of a rundown on things I've tried and what I've found from a taste aspect:
Bananas - Disgusting. Knock out the sweet part and they're nasty, but I eat them.
Chocolate - Disappointing. I have to enjoy the bitter aspects.
Shrimp - Great. Plus, my mouth rinse brings out the flavor for extended time.
Budweiser - Tastes like a good import with not great hops.
Tea - The bitter flavors are great and very pronounced.
Coffee - Very strong flavor. Good for enjoying the bitter.
Wienies - Way too spicy. They almost burn my mouth.
Salsa - Yikes! Pace medium is hot, hot, hot! I miss hot sauces.
Berries - Almost inedible. take out the sweet and they're nasty.
Rice - Bland. Just like rice tastes normally.
Long grain and wild rice - Tastes exactly like I would expect dirt to taste.
Cashews - Unbelievable. I can taste the nut butter (like peanut butter) and salt tastes and They're awesome together.
Yogurt - Unpleasant. The worst parts of the "yogurt" taste are turned up to the max and the sweet and fruits added don't have a good taste, but yogurt is still a major part of my diet.
Pork chops - Almost tasteless.
Grilled hamburger - Almost tasteless.
Sausage gravy - Intensely spicy, but tasty.
Most food is unpleasant to taste. That's an improvement over August when I was eating before the pneumonia. Back then I had two taste sensations: 1) Nothing and 2) My mouth is on fire.
I can eat a max of maybe 12 ounces at a time. That will generally require about 16 ounces of water to get everything swallowed. My swallowing mechanism gets tired during that much. Once that happens, I may as well quit trying to eat because I'm swallowing too weakly to get anything down.
Fortunately, my swallowing mechanism gets tired about the wsame time as my stomach gets filled. I'm eating more smaller meals than I used to.
Monday, December 28, 2009
Unexpected Good News
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.
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.
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.
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