Hey, it's sunny now. I've kind of made this next quote mine. It fits so well.
"You're never really ready to ride the bull. Sometimes it just happens to be your turn", Ty Murray, World Champion Bull Rider. I'm not riding a bull, but that sums it up so well. I wasn't ready for this, but it was my turn to take the ride.
My energy levels are coming back and I've started getting hungry again. I am going to drive my wife, Robby, nuts until I can get out on my own and do some shopping and cooking. I've still got a couple of yards of gauze wrapped around my neck and I'm trying to get that a bit less ugly before I pop up at a grocery store.
Shaving is another appearance issue. I think I'll just try to make it look like I'm growing a rather scroungy beard on purpose.
I get to do calorie counting - to make sure I get enough. I can eat anything I want. There is no restriction on calories, fat, carbs, sugars, anything. That will stay true through the next set of treatments. The goal is to keep weight and energy levels as high as possible through that.
Saturday, March 28, 2009
Thursday, March 26, 2009
Thursday, March 26
The feeding tube is gone. Eating is harder than I remember it being.
There's one spot in my throat that's still got an opening that's not supposed to be there. I suspect I have another surgery coming. This one will be very minor - just a staple or 2 to close up an opening from my throat to the area of the main surgery.
Next appointment is a week from today. I'll find out then what's happening next. Radiation doesn't start until everything from the surgery is healed, and that's taking a bit longer than was expected before the surgery.
Doc is really confident he found the source in my thyroid and removed it. He even drew a picture showing how the thyroid is involved with everything that's causing me problems after the surgery.
Now that I can finally get up and get around, It looks like I'm gonna need some skis to get any exercise.
There's one spot in my throat that's still got an opening that's not supposed to be there. I suspect I have another surgery coming. This one will be very minor - just a staple or 2 to close up an opening from my throat to the area of the main surgery.
Next appointment is a week from today. I'll find out then what's happening next. Radiation doesn't start until everything from the surgery is healed, and that's taking a bit longer than was expected before the surgery.
Doc is really confident he found the source in my thyroid and removed it. He even drew a picture showing how the thyroid is involved with everything that's causing me problems after the surgery.
Now that I can finally get up and get around, It looks like I'm gonna need some skis to get any exercise.
Wednesday, March 25, 2009
Real Food Less Than 24 Hours Away
By this time tomorrow (Thursday, March 26), the feeding tube should be out and I should be able to eat real food again. I'm ready to end 2 weeks of liquid or "easily-swallowed" food.
I'm going to need to get active and build some stamina back up. At one point I lost 8 pounds in a week. As long as I'm tied to this dang IV stand that feeds me, it's tough to do anything. I'm mostly doing nothing, which isn't helping with energy and stamina.
I'm going to see how many hours I can be on the computer over the weekend. If I can hit 8 or 9 hours, then I might be able to get back to work for a few days and then see how the radiation and chemo affects my ability to continue working.
The smoking part is going really well. I forgot to put on a fresh patch yesterday and I never got around to putting one on today. I inadvertently went one day with no nicotine crutch and intentionally went another day. That's not really safe from a "stop smoking" standpoint. It's a little early to try to go unassisted. I do want to let you know that if you're trying to quit, after 3 weeks the urge to smoke is further gone than you might think.
I'm going to need to get active and build some stamina back up. At one point I lost 8 pounds in a week. As long as I'm tied to this dang IV stand that feeds me, it's tough to do anything. I'm mostly doing nothing, which isn't helping with energy and stamina.
I'm going to see how many hours I can be on the computer over the weekend. If I can hit 8 or 9 hours, then I might be able to get back to work for a few days and then see how the radiation and chemo affects my ability to continue working.
The smoking part is going really well. I forgot to put on a fresh patch yesterday and I never got around to putting one on today. I inadvertently went one day with no nicotine crutch and intentionally went another day. That's not really safe from a "stop smoking" standpoint. It's a little early to try to go unassisted. I do want to let you know that if you're trying to quit, after 3 weeks the urge to smoke is further gone than you might think.
Monday, March 23, 2009
6 Days in a Hospital
Tuesday, March 17
Checked in to the admittance at 5:00 AM. Anesthesiologist told me to be prepared to be on a breathing tube after the operation.
In the recovery room, I checked stuff out. I didn't have a breathing tube, I could hold and move my head, My right arm worked fine. That was all good stuff.
I did have about the most sore throat you can imagine and swallowing was almost out of the question. Later in the evening all the sore spots in my throat started spewing liquids and I could feel that moving into my lungs. That was not good. I was putting out about a teaspoon every 5 minutes. A little math and that was plenty to drown me if I fell asleep and it all got in my lungs. I was still a bit goofy from the anesthetic.
None of that mattered. Every time I fell asleep, someone came in my room and woke me up. After waking up at 3:30 AM to get to the hospital, I didn't get more than an hour of sleep the first night.
Wednesday, March 18
I was on a clear diet that was inedible. Even if I had been able to swallow with any efficiency, that stuff could not be tolerated. Think in terms of beef bouillon cubes mixed with hot water at twice the recommended strength. I told them at every meal I couldn't swallow anything hot. Hot stuff was the basis of every meal. Jello that could barely be chewed and stuck in my throat was another staple. Robby started bringing me yogurt from home.
I finally found a way to lay that minimized the problems from the liquids in my throat. I also found that morphine slowed down the liquid production in my throat. I think I got 4 hours of sleep that night.
I also had my favorite, "Mr. Suderman, I'm sorry to wake you, but..." moment on Wednesday. Someone woke me up (during the day) to ask if Housekeeping had done everything I was expecting of them. Doc never showed up, but I wasn't expecting to go home.
One time I tried to swallow an antibiotic and I thought I had it. Then I coughed and it popped right out. That was an omen of things to come.
I figured out how to get some sleep, if you consider 4 hours to be some sleep. 4 ml of Morphine and I could sleep 2 of the next 3 hours, even around all the wakeups.
Thursday, March 19
The nurse told me I had to eat and drink before I could go home and this was the day I was expecting that. The torture du'jour was Cream of Wheat. 1/2 cup of milk, 1 pat of butter, one tsp of sugar, and some salt later, it was still awful, but I ate every bit. I left an absolutely clean plate. Yogurt, orange juice, and I think something else.
Doc came in and liked the way everything was healing, but he was concerned about my swallowing, so he ordered a swallowing test. That looked like a potential setback.
Before the results of the test came back, I looked at the suction tube I was using for all the liquids in my throat. It was filling up with Cream of Wheat that I was coughing up out of my lungs. I knew I wasn't going home. I had to have a feeding tube.
I will not go into the details of having a feeding tube inserted. It is one of the most unpleasant things I've experienced in my life. Gentleness from the doctor will not get the tube inserted. After it was inserted and I didn't have to swallow, it was pleasant.
Friday, March 20
When the doc came in I explained my problems sleeping. My medications that night included more stuff than I had ever seen before, but I really slept well. Even with everybody knowing my need for sleep, I was still woke up 6 times in the first 7 hours after trying to go to sleep. I didn't actually become alert until some time Saturday afternoon, but I needed the sleep.
Saturday and Sunday
Not much to do except wait to be released. I slept without medication and very well Saturday night. We got all the arrangements made for the home health care professionals and the formula for my home feeding unit.
Checked in to the admittance at 5:00 AM. Anesthesiologist told me to be prepared to be on a breathing tube after the operation.
In the recovery room, I checked stuff out. I didn't have a breathing tube, I could hold and move my head, My right arm worked fine. That was all good stuff.
I did have about the most sore throat you can imagine and swallowing was almost out of the question. Later in the evening all the sore spots in my throat started spewing liquids and I could feel that moving into my lungs. That was not good. I was putting out about a teaspoon every 5 minutes. A little math and that was plenty to drown me if I fell asleep and it all got in my lungs. I was still a bit goofy from the anesthetic.
None of that mattered. Every time I fell asleep, someone came in my room and woke me up. After waking up at 3:30 AM to get to the hospital, I didn't get more than an hour of sleep the first night.
Wednesday, March 18
I was on a clear diet that was inedible. Even if I had been able to swallow with any efficiency, that stuff could not be tolerated. Think in terms of beef bouillon cubes mixed with hot water at twice the recommended strength. I told them at every meal I couldn't swallow anything hot. Hot stuff was the basis of every meal. Jello that could barely be chewed and stuck in my throat was another staple. Robby started bringing me yogurt from home.
I finally found a way to lay that minimized the problems from the liquids in my throat. I also found that morphine slowed down the liquid production in my throat. I think I got 4 hours of sleep that night.
I also had my favorite, "Mr. Suderman, I'm sorry to wake you, but..." moment on Wednesday. Someone woke me up (during the day) to ask if Housekeeping had done everything I was expecting of them. Doc never showed up, but I wasn't expecting to go home.
One time I tried to swallow an antibiotic and I thought I had it. Then I coughed and it popped right out. That was an omen of things to come.
I figured out how to get some sleep, if you consider 4 hours to be some sleep. 4 ml of Morphine and I could sleep 2 of the next 3 hours, even around all the wakeups.
Thursday, March 19
The nurse told me I had to eat and drink before I could go home and this was the day I was expecting that. The torture du'jour was Cream of Wheat. 1/2 cup of milk, 1 pat of butter, one tsp of sugar, and some salt later, it was still awful, but I ate every bit. I left an absolutely clean plate. Yogurt, orange juice, and I think something else.
Doc came in and liked the way everything was healing, but he was concerned about my swallowing, so he ordered a swallowing test. That looked like a potential setback.
Before the results of the test came back, I looked at the suction tube I was using for all the liquids in my throat. It was filling up with Cream of Wheat that I was coughing up out of my lungs. I knew I wasn't going home. I had to have a feeding tube.
I will not go into the details of having a feeding tube inserted. It is one of the most unpleasant things I've experienced in my life. Gentleness from the doctor will not get the tube inserted. After it was inserted and I didn't have to swallow, it was pleasant.
Friday, March 20
When the doc came in I explained my problems sleeping. My medications that night included more stuff than I had ever seen before, but I really slept well. Even with everybody knowing my need for sleep, I was still woke up 6 times in the first 7 hours after trying to go to sleep. I didn't actually become alert until some time Saturday afternoon, but I needed the sleep.
Saturday and Sunday
Not much to do except wait to be released. I slept without medication and very well Saturday night. We got all the arrangements made for the home health care professionals and the formula for my home feeding unit.
Sunday, March 22, 2009
It's Almost All Good News
The Best News is the from the surgeon and oncologist.
Prognosis
The surgeson said that if there was a source, he got it. He had an unusable lab
result on my right-side thyroid and that's the one he thought was the source. I don't have that thyroid any more, so if that's it, it's gone.
The oncologist said that with what's already been done, there's no point in continuing to look for the source. He didn't think a source would ever be found. That happens in 6-7% of the type of cancer I had. It's his thought that if there is a source, it's at no more than a microscopic stage, and possibly just a few cells. He's confident the radiation and low-dose chemo I'm going to get to clean up the remnants from my neck will kill any source that size - if there even is a source. His words: "Obviously, when we never find a source, those patients have outstanding outcomes". You would think so.
Those Nasty Risk Factors I Had
They no longer apply. The surgery revealed that they were all wrong. The stuff in my neck was very aggressive. That's not the dangerous part. The source is the dangerous part. Once it's gone or once it's found to never have existed, that risk factor is gone. Finding the secondary site before finding the primary site was my other risk factor. I've had X-rays, CT scans, a PET scan, 2 surgeries, probably 30 or 40 biopsies, and there is absolutely nothing that's been found. If it's impossible to find the source, then finding the secondary site first is no longer a risk factor.
There is not a soft spot from my sinuses, through my throat, and down to where my wind pipe joins my lungs that hasn't been sliced on.
I Didn't Lose Many Good Pieces
I lost a nerve that will temporarily cause a loss of range in right shoulder motion. Specifically, raising my arm over my head to touch my left ear. I lost another nerve that controls certain smile functions on the right edge of my lower lip. That also comes back after time. In addition to the thyroid, I also lost a para-thyroid and a not significant blood vein.
Why It Took 6 Days Instead of Overnight
There was one problem. One piece the surgeon tried to leave for structural purposes didn't have enough strength to hang on. That opened up a gap between my esophagus and my lungs. That was discovered Thursday. I confirmed it before the radiologist. I kept coughing up the Cream of Wheat they fed me that morning.
That resulted in the insertion of a feeding tube, which I will have until Tuesday or Thursday. The surgeon thinks it will heal on its own, but if it doesn't, then I get another surgery that tears up my throat.
I'll gladly take that bit of bad news in trade for the good news I got out of this. The news had all been bad and getting worse since my firsct doctor's visit. It was time for the trend to change and I figured it would.
I never figured on anything remotely approaching how good the news really was.
Prognosis
The surgeson said that if there was a source, he got it. He had an unusable lab
result on my right-side thyroid and that's the one he thought was the source. I don't have that thyroid any more, so if that's it, it's gone.
The oncologist said that with what's already been done, there's no point in continuing to look for the source. He didn't think a source would ever be found. That happens in 6-7% of the type of cancer I had. It's his thought that if there is a source, it's at no more than a microscopic stage, and possibly just a few cells. He's confident the radiation and low-dose chemo I'm going to get to clean up the remnants from my neck will kill any source that size - if there even is a source. His words: "Obviously, when we never find a source, those patients have outstanding outcomes". You would think so.
Those Nasty Risk Factors I Had
They no longer apply. The surgery revealed that they were all wrong. The stuff in my neck was very aggressive. That's not the dangerous part. The source is the dangerous part. Once it's gone or once it's found to never have existed, that risk factor is gone. Finding the secondary site before finding the primary site was my other risk factor. I've had X-rays, CT scans, a PET scan, 2 surgeries, probably 30 or 40 biopsies, and there is absolutely nothing that's been found. If it's impossible to find the source, then finding the secondary site first is no longer a risk factor.
There is not a soft spot from my sinuses, through my throat, and down to where my wind pipe joins my lungs that hasn't been sliced on.
I Didn't Lose Many Good Pieces
I lost a nerve that will temporarily cause a loss of range in right shoulder motion. Specifically, raising my arm over my head to touch my left ear. I lost another nerve that controls certain smile functions on the right edge of my lower lip. That also comes back after time. In addition to the thyroid, I also lost a para-thyroid and a not significant blood vein.
Why It Took 6 Days Instead of Overnight
There was one problem. One piece the surgeon tried to leave for structural purposes didn't have enough strength to hang on. That opened up a gap between my esophagus and my lungs. That was discovered Thursday. I confirmed it before the radiologist. I kept coughing up the Cream of Wheat they fed me that morning.
That resulted in the insertion of a feeding tube, which I will have until Tuesday or Thursday. The surgeon thinks it will heal on its own, but if it doesn't, then I get another surgery that tears up my throat.
I'll gladly take that bit of bad news in trade for the good news I got out of this. The news had all been bad and getting worse since my firsct doctor's visit. It was time for the trend to change and I figured it would.
I never figured on anything remotely approaching how good the news really was.
Monday, March 16, 2009
Monday, March 16
Tomorrow is day 1 of the beginning of the healing. Everything up to now has been trying to find what all needs to be healed and where it's located.
The lump on my neck is being removed tomorrow. It hasn't been there long, so hopefully it doesn't have offshoots growing into a lot of structural components in my neck. They are going to cut out anything associated with the lump and anything else they've found that is a site of origin or a site it's spread to.
So far, it's scheduled for in and out in the same day, but I've been told to expect an overnight stay. I've run into some unpleasant reports of what people find after this surgery. I've got to be (and am) prepared for bad news about what all has to be removed.
Any damage the lump is going to do is already done. That damage would be the result of invasion of surrounding structures and requiring removal or trimming of important parts. Once the lump is removed, the remnants typically respond very well to radiation.
Hopefully, they've already located the source and it's in a place they can get to or a place that responds well to radiation. If that's the case, I've got a couple months of feeling like crap from the radiation and then a couple of years of watching for recurrence and that pretty much wraps up the treatment and observation.
After all the bad news I got in a short time frame, I'm confident I've hit the bottom end of it and I'm going to start getting better news starting tomorrow. I'll try to post a follow-up about what was found on Wednesday.
The lump on my neck is being removed tomorrow. It hasn't been there long, so hopefully it doesn't have offshoots growing into a lot of structural components in my neck. They are going to cut out anything associated with the lump and anything else they've found that is a site of origin or a site it's spread to.
So far, it's scheduled for in and out in the same day, but I've been told to expect an overnight stay. I've run into some unpleasant reports of what people find after this surgery. I've got to be (and am) prepared for bad news about what all has to be removed.
Any damage the lump is going to do is already done. That damage would be the result of invasion of surrounding structures and requiring removal or trimming of important parts. Once the lump is removed, the remnants typically respond very well to radiation.
Hopefully, they've already located the source and it's in a place they can get to or a place that responds well to radiation. If that's the case, I've got a couple months of feeling like crap from the radiation and then a couple of years of watching for recurrence and that pretty much wraps up the treatment and observation.
After all the bad news I got in a short time frame, I'm confident I've hit the bottom end of it and I'm going to start getting better news starting tomorrow. I'll try to post a follow-up about what was found on Wednesday.
Friday, March 13, 2009
Friday, the 13th - The First Surgery
Everything was done inside my throat. That's not what I was expecting. I did ask the doc how sore my throat was going to be. "That depends on what we find in there" wasn't exactly answering the question and now I know why he didn't tell me. I have to swallow twice just to drink a sip of water.
I will not explain just how sore my throat is, because I'd rather not type 2 paragraphs of profanities.
The doc did find some points of interest (that's what he called them) and he's doing biopsies on those. All 8 of them. That makes 8 places where he had to slice something out of my throat. No wonder it's a bit sore.
Here's hoping one of the eight biopsies shows up as the source location. I really want 1, not 2, not 3 and especially not 8.
The surgery to remove the lump on my neck is set for Tuesday at Wesley. 5 AM check-in. Yikes! That's early. They aren't sure how long I will have to stay and haven't set it up for overnight yet, but told me to be prepared to stay overnight.
I will not explain just how sore my throat is, because I'd rather not type 2 paragraphs of profanities.
The doc did find some points of interest (that's what he called them) and he's doing biopsies on those. All 8 of them. That makes 8 places where he had to slice something out of my throat. No wonder it's a bit sore.
Here's hoping one of the eight biopsies shows up as the source location. I really want 1, not 2, not 3 and especially not 8.
The surgery to remove the lump on my neck is set for Tuesday at Wesley. 5 AM check-in. Yikes! That's early. They aren't sure how long I will have to stay and haven't set it up for overnight yet, but told me to be prepared to stay overnight.
Thursday, March 12, 2009
Cancer Cures Smoking
I'm not your Mom. I'm not your Dad. I wouldn't have paid any attention to this advice if you had given it to me a year ago.
Quit smoking! Do it now! What I've got may take me down. Maybe it can save a life or two and maybe it can avoid some misery for some of my friends if they can learn from what happened to me and do what they can to avoid it in their own lives.
Forget the prescription meds. You can do it without those. The side-effects of the meds are something I wasn't willing to risk. If you get a prescription, check the side effects pretty carefully and thoroughly. Be certain you're willing to risk those side-effects.
Cold turkey: That is tough. I did it once and it lasted 3 years. Another time it lasted 3 months. A couple of other times I didn't make it a week. It can be done, but your willpower, motivation, and ability to tolerate some very strong urges better be sky high.
Patch: That never worked for me. I've tried it several times. A patch trickles nicotine and I was always just on the edge of tolerating the withdrawl. I'd always end up with something happening that broke down my will and I'd end up smoking a cigarette while wearing a patch. That's when it's pretty clear it's not working well.
Lozenges: I haven't tried those.
Gum: That stuff works. Like a patch, it keeps a trickle of nicotine running. You chew it until it releases some nicotine and then park it between your cheek and gums. Unlike a patch, you can give yourself a little spike in nicotine levels by chewing it a little longer when you first start chewing it or while you're chewing it. That simulates the nicotine kick a cigarette gives you and is effective at reducing the urge to smoke. Nicorette has some flavors that are very pleasant. Fruit Chill and White Ice Mint are very tasty.
With the gum, it's not as dangerous as a patch if you break down and have a cigarette. Just delay the next piece of gum a bit. I wasn't perfect at getting stopped right away. I had 3 cigarettes the first day, 2 the second, and 1 the third. After that, none.
After a week, I can wake up, eat breakfast, have a cup of coffee, and wait 15 minutes after that for the first piece of gum. During that time I hardly even feel an urge for a cigarette. Plus, after about 2 days, cigarettes taste absolutely horrible.
Speaking of taste, it only takes about 2 days until you can actually taste food again. I can't believe how good stuff tastes now.
A day's supply of Nicorette costs about the same as a pack and a half or 2 packs of cigarettes. I tried Walgreen's economical store brand. Forget that stuff. It's hard as a rock and has almost no flavor. I don't think I would succeed if that was my only option.
Quit smoking! Do it now! What I've got may take me down. Maybe it can save a life or two and maybe it can avoid some misery for some of my friends if they can learn from what happened to me and do what they can to avoid it in their own lives.
Forget the prescription meds. You can do it without those. The side-effects of the meds are something I wasn't willing to risk. If you get a prescription, check the side effects pretty carefully and thoroughly. Be certain you're willing to risk those side-effects.
Cold turkey: That is tough. I did it once and it lasted 3 years. Another time it lasted 3 months. A couple of other times I didn't make it a week. It can be done, but your willpower, motivation, and ability to tolerate some very strong urges better be sky high.
Patch: That never worked for me. I've tried it several times. A patch trickles nicotine and I was always just on the edge of tolerating the withdrawl. I'd always end up with something happening that broke down my will and I'd end up smoking a cigarette while wearing a patch. That's when it's pretty clear it's not working well.
Lozenges: I haven't tried those.
Gum: That stuff works. Like a patch, it keeps a trickle of nicotine running. You chew it until it releases some nicotine and then park it between your cheek and gums. Unlike a patch, you can give yourself a little spike in nicotine levels by chewing it a little longer when you first start chewing it or while you're chewing it. That simulates the nicotine kick a cigarette gives you and is effective at reducing the urge to smoke. Nicorette has some flavors that are very pleasant. Fruit Chill and White Ice Mint are very tasty.
With the gum, it's not as dangerous as a patch if you break down and have a cigarette. Just delay the next piece of gum a bit. I wasn't perfect at getting stopped right away. I had 3 cigarettes the first day, 2 the second, and 1 the third. After that, none.
After a week, I can wake up, eat breakfast, have a cup of coffee, and wait 15 minutes after that for the first piece of gum. During that time I hardly even feel an urge for a cigarette. Plus, after about 2 days, cigarettes taste absolutely horrible.
Speaking of taste, it only takes about 2 days until you can actually taste food again. I can't believe how good stuff tastes now.
A day's supply of Nicorette costs about the same as a pack and a half or 2 packs of cigarettes. I tried Walgreen's economical store brand. Forget that stuff. It's hard as a rock and has almost no flavor. I don't think I would succeed if that was my only option.
PET Scan and What's Coming Next
PET scan is interesting. I got carb-starved for 24 hours. No carbs, just proteins and vegetables to eat. Drink lots of fluids. Drive the blood sugar down.
Then they gave me a radioactive sugar solution through an IV. After that I got to sit for about an hour. 2 things happen in that hour. Normal stuff latches onto the sugar, uses it, and flushes itself of the sugar. Stuff that's growing latches on to the sugar and hangs on. That leaves only growing stuff with the radioactive sugar.
Then there's a 25-minute ride through a scanning machine that's looking for anything radioactive. Anything radioactive is something growing, which is the cancer. Slick.
They also run a CT scan so they can superimpose the radioactive spots over the body structures. They ran the thing from head to about mid-thigh. Now, instead of just poking and prodding me, they've got pics of all my internal structure superimposed with the spots with cancer. Well, hopefully with the spot where the source of the cancer is located.
Tomorrow is an exploratory surgery to look at stuff in my neck and I imagine make a plan for removing the lump in my neck. After that it's probably Tuesday to have the lump removed. The surgery on the lump is called a neck dissection, a rather unpleasant term. It's scheduled for an overnight stay.
Here's the catch with the neck dissection. After that I find out what all they had to remove to get rid of the lump. They may have an idea tomorrow, but they have to get in and actually remove it to determine exactly what all it's hooked on to. Possible bad outcomes include removing muscles, nerves, and a lot of other things in my neck that I'm rather fond of. Having normal use of all functions involving my right arm, vocal cords, and ability to hold my head upright is a good result.
After the surgery is 2 months (typically) of radiation. The lump on my neck isn't likely to do any damage that isn't already done. It's likely to respond well to radiation and any little bits they can't get or miss with the surgery generally shrivel to nothing from the radiation.
As long as the original source remains active, it will keep putting new growth out there. That's bad. There are some source locations that aren't big problems. There are others that are big problems.
Then they gave me a radioactive sugar solution through an IV. After that I got to sit for about an hour. 2 things happen in that hour. Normal stuff latches onto the sugar, uses it, and flushes itself of the sugar. Stuff that's growing latches on to the sugar and hangs on. That leaves only growing stuff with the radioactive sugar.
Then there's a 25-minute ride through a scanning machine that's looking for anything radioactive. Anything radioactive is something growing, which is the cancer. Slick.
They also run a CT scan so they can superimpose the radioactive spots over the body structures. They ran the thing from head to about mid-thigh. Now, instead of just poking and prodding me, they've got pics of all my internal structure superimposed with the spots with cancer. Well, hopefully with the spot where the source of the cancer is located.
Tomorrow is an exploratory surgery to look at stuff in my neck and I imagine make a plan for removing the lump in my neck. After that it's probably Tuesday to have the lump removed. The surgery on the lump is called a neck dissection, a rather unpleasant term. It's scheduled for an overnight stay.
Here's the catch with the neck dissection. After that I find out what all they had to remove to get rid of the lump. They may have an idea tomorrow, but they have to get in and actually remove it to determine exactly what all it's hooked on to. Possible bad outcomes include removing muscles, nerves, and a lot of other things in my neck that I'm rather fond of. Having normal use of all functions involving my right arm, vocal cords, and ability to hold my head upright is a good result.
After the surgery is 2 months (typically) of radiation. The lump on my neck isn't likely to do any damage that isn't already done. It's likely to respond well to radiation and any little bits they can't get or miss with the surgery generally shrivel to nothing from the radiation.
As long as the original source remains active, it will keep putting new growth out there. That's bad. There are some source locations that aren't big problems. There are others that are big problems.
Wednesday, March 11, 2009
Some lifestyle changes are coming
The steps involved are:
1) Get rid of anything that can be cut out.
2) Nuke the crap out of anything left.
3) Locate and nuke the source.
4) Make it to September (6 months).
6 months is the first milestone. If my current secondary site is the only one, that location is generally controlled at that time. If the source is found, the difficulty of controlling that location is the next factor. After 6 months, recurrence, the response of the source location, and spreading to other areas seem to be the ongoing problems.
I will be instructed to never expose myself to cigarette smoke - ever - for the rest of my life. Exposure to cigarette smoke is a major recurrence factor. That pretty much eliminates most of the things I do outside my house other than work. I've resigned my offices at American Legion Post 4. I just can't go there any more. My involvement with darts is over. I can't go to any of the places where things happen.
Come back later for the "Cancer Cures Smoking" post.
1) Get rid of anything that can be cut out.
2) Nuke the crap out of anything left.
3) Locate and nuke the source.
4) Make it to September (6 months).
6 months is the first milestone. If my current secondary site is the only one, that location is generally controlled at that time. If the source is found, the difficulty of controlling that location is the next factor. After 6 months, recurrence, the response of the source location, and spreading to other areas seem to be the ongoing problems.
I will be instructed to never expose myself to cigarette smoke - ever - for the rest of my life. Exposure to cigarette smoke is a major recurrence factor. That pretty much eliminates most of the things I do outside my house other than work. I've resigned my offices at American Legion Post 4. I just can't go there any more. My involvement with darts is over. I can't go to any of the places where things happen.
Come back later for the "Cancer Cures Smoking" post.
I'm not getting anything scheduled because...WHAT??
Oops, I was off by a day for the PET scan. It's Thusday, which is still tomorrow.
I did better reporting it than my medical facility did scheduling it. My medical facility shall remain unnamed because of this little problem.
When the doc called me with the biopsy results, he gave me a name and number to call to schedule a PET scan and a surgery. I was taking notes, but rather than review all my notes, I asked him if the person I was calling would have all the information and know what to schedule. He assured me she would.
I made the call. Voice Mail. Here's the great part in the voice mail, "it may be the next business day before we return your call". The doc is stressing the urgency and the schedulers might be too busy to talk to me. I had a separate issue I needed to discuss with the doc's nurse. I got her voice mail, too. It had the same "next business day" message in it.
On the "next business day", I called again and actually got the scheduler, who explained that they only do PET scans once a week and she didn't know what day that was and she would call me when she found out. I was still getting voice mail for the doc's nurse.
On the third day I called again and got voice mail. I called back and explained the problem to who I could get. They put me on hold forever while trying to get the scheduler on the phone. The phone flipped back into the cue to be answered by the original receptionist I had already talked to.
I called again, explained that my situation did appear to reach the actual definition of life and death and asked to talk to the person who talks to very angry patients. I got a supervisor.
Supervisor called back an hour later and explained that my scheduler didn't schedule PET scans, she only scheduled surgeries and she was waiting on the schedule for the PET scan. The person who schedules PET scans was my doc's nurse, who was on vacation. I asked this supervisor if she could give this information to the doctors, who seemed to need to know things like that.
The next day I got another call from the supervisor. They don't actually do PET scans, so they can't actually schedule them, but she had set something up with someone who actually did PET scans. That was set for Thursday. She would try to get my surgery set for the following Tuesday, because my doc was off Thursday and Friday.
Later that day I got a call from the original scheduler. Now that she had a schedule for the PET scan, she could schedule my surgery for Friday. I told her that my doc was off Thursday and Friday. She told me he was coming in anyway to do my surgery.
I know it's not going to be a good golfing day Friday, but having the doc come in on his day off? That just didn't sound good. She explained my check-in time, but didn't mention anything about the overnight stay, which was in my original notes from the doc. That's when I discovered this was an additional surgery that wasn't on the doc's original schedule of things to do.
I sure hope the docs are more competent than the support staff. I think I'll remind them that I've filled out every single allergy questionnaire with an allergy to sodium pentathol and a reaction of death. I have died on an operating table from a reaction to a possible overdose of sodium pentathol. The way details seem to get lost in this whole experience, I'd hate for them to miss that one.
I did better reporting it than my medical facility did scheduling it. My medical facility shall remain unnamed because of this little problem.
When the doc called me with the biopsy results, he gave me a name and number to call to schedule a PET scan and a surgery. I was taking notes, but rather than review all my notes, I asked him if the person I was calling would have all the information and know what to schedule. He assured me she would.
I made the call. Voice Mail. Here's the great part in the voice mail, "it may be the next business day before we return your call". The doc is stressing the urgency and the schedulers might be too busy to talk to me. I had a separate issue I needed to discuss with the doc's nurse. I got her voice mail, too. It had the same "next business day" message in it.
On the "next business day", I called again and actually got the scheduler, who explained that they only do PET scans once a week and she didn't know what day that was and she would call me when she found out. I was still getting voice mail for the doc's nurse.
On the third day I called again and got voice mail. I called back and explained the problem to who I could get. They put me on hold forever while trying to get the scheduler on the phone. The phone flipped back into the cue to be answered by the original receptionist I had already talked to.
I called again, explained that my situation did appear to reach the actual definition of life and death and asked to talk to the person who talks to very angry patients. I got a supervisor.
Supervisor called back an hour later and explained that my scheduler didn't schedule PET scans, she only scheduled surgeries and she was waiting on the schedule for the PET scan. The person who schedules PET scans was my doc's nurse, who was on vacation. I asked this supervisor if she could give this information to the doctors, who seemed to need to know things like that.
The next day I got another call from the supervisor. They don't actually do PET scans, so they can't actually schedule them, but she had set something up with someone who actually did PET scans. That was set for Thursday. She would try to get my surgery set for the following Tuesday, because my doc was off Thursday and Friday.
Later that day I got a call from the original scheduler. Now that she had a schedule for the PET scan, she could schedule my surgery for Friday. I told her that my doc was off Thursday and Friday. She told me he was coming in anyway to do my surgery.
I know it's not going to be a good golfing day Friday, but having the doc come in on his day off? That just didn't sound good. She explained my check-in time, but didn't mention anything about the overnight stay, which was in my original notes from the doc. That's when I discovered this was an additional surgery that wasn't on the doc's original schedule of things to do.
I sure hope the docs are more competent than the support staff. I think I'll remind them that I've filled out every single allergy questionnaire with an allergy to sodium pentathol and a reaction of death. I have died on an operating table from a reaction to a possible overdose of sodium pentathol. The way details seem to get lost in this whole experience, I'd hate for them to miss that one.
Tuesday, March 10, 2009
From Nothing to "My Chances of Survival Are What?" in 30 Days
I just checked the timeline. It was 30 days.
The last week in January I noticed a little lump in my neck. Swollen lymph node. No biggie. It got bigger. And bigger.
Scheduling a doctor was nearly a 2-week wait. That wasn't a problem. I thought I had some infection my body was handling and saw no need for Immediate Care or an Emergency Room. It was 4 weeks from when I noticed the lump until I saw the doc.
The moment the doc saw the lump and I saw the look on the doc's face, I knew I wasn't going to like what I was going to hear. Then the words, "I think you have cancer". Then the words "mass" and "biopsy". 3 vials of blood for the blood work. Chest X-ray (already looking for the source) and a CAT scan of my neck. My entire body was poked and probed for lumps from somewhere south of the waist on up. Nothing. I did the south of the waist inspection myself.
The followup visit was 1 week later. My blood got great scores on every test. Nothing there. Chest x-ray was great. Heart and lungs normal. Well, that's good news for a smoker. CAT scan was pretty much inconclusive. The lump wasn't my lymph node. They ruled out a carotid body tumor. By now they had ruled out lungs, throat, larynx, carotid body tumor, Hodgkins disease, non-Hodgkins lymphoma and several other cancers.
The most conclusive result from the CAT scan was "primary metastatic trauma is suspected". In English, that's cancer that's spread from another location. That's bad news. Real bad news. Biopsy is scheduled.
Doc took 2 samples. One for microscopic examination and one for visual examination. The syringe for the visual examination had nothing but clear, yellowish puss in it. Aha! I knew it. It's just an infection. I said, "That increase the possibility it's just an infection doesn't it". The answer wasn't what I was hoping for. "Yes, but I still think you have cancer". Damn!
Doc called the next day with the biopsy results. Squamous cell carcinoma. He gave me some internet site where I could do some research. Sit back in your seats, do not raise you hands or stand up, make sure your seat belts are tightly fastened, cause this roller coaster is about to take a wild ride - all downhill.
5-year survival for this type of cancer is 60% and it mostly hits people 5 - 10 years older than me. It peaks in the 65-74 age group and really drops off in the 75 - 84 age group. A lot of things really drop off in the 75 - 84 age group. That was the extent of the good news.
A complicating factor is aggressiveness of the secondary occurrence site. Mine is growing rapidly and qualifies as aggressive because of that. That reduces 5-year survival by 1/2, so now I'm looking at 30%. Another complicating factor is the fact that it spread before it was diagnosed. That reduces survivability by 1/2, so now I'm looking at 15%. Mine is classified as Stage 4.
A bit more research indicates that of those who don't survive 5 years, most die in the 6 month to 2-year range. That's what I'm staring straight in the face.
Next..."You didn't schedule any more tests or anything because of WHAT??"
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The last week in January I noticed a little lump in my neck. Swollen lymph node. No biggie. It got bigger. And bigger.
Scheduling a doctor was nearly a 2-week wait. That wasn't a problem. I thought I had some infection my body was handling and saw no need for Immediate Care or an Emergency Room. It was 4 weeks from when I noticed the lump until I saw the doc.
The moment the doc saw the lump and I saw the look on the doc's face, I knew I wasn't going to like what I was going to hear. Then the words, "I think you have cancer". Then the words "mass" and "biopsy". 3 vials of blood for the blood work. Chest X-ray (already looking for the source) and a CAT scan of my neck. My entire body was poked and probed for lumps from somewhere south of the waist on up. Nothing. I did the south of the waist inspection myself.
The followup visit was 1 week later. My blood got great scores on every test. Nothing there. Chest x-ray was great. Heart and lungs normal. Well, that's good news for a smoker. CAT scan was pretty much inconclusive. The lump wasn't my lymph node. They ruled out a carotid body tumor. By now they had ruled out lungs, throat, larynx, carotid body tumor, Hodgkins disease, non-Hodgkins lymphoma and several other cancers.
The most conclusive result from the CAT scan was "primary metastatic trauma is suspected". In English, that's cancer that's spread from another location. That's bad news. Real bad news. Biopsy is scheduled.
Doc took 2 samples. One for microscopic examination and one for visual examination. The syringe for the visual examination had nothing but clear, yellowish puss in it. Aha! I knew it. It's just an infection. I said, "That increase the possibility it's just an infection doesn't it". The answer wasn't what I was hoping for. "Yes, but I still think you have cancer". Damn!
Doc called the next day with the biopsy results. Squamous cell carcinoma. He gave me some internet site where I could do some research. Sit back in your seats, do not raise you hands or stand up, make sure your seat belts are tightly fastened, cause this roller coaster is about to take a wild ride - all downhill.
5-year survival for this type of cancer is 60% and it mostly hits people 5 - 10 years older than me. It peaks in the 65-74 age group and really drops off in the 75 - 84 age group. A lot of things really drop off in the 75 - 84 age group. That was the extent of the good news.
A complicating factor is aggressiveness of the secondary occurrence site. Mine is growing rapidly and qualifies as aggressive because of that. That reduces 5-year survival by 1/2, so now I'm looking at 30%. Another complicating factor is the fact that it spread before it was diagnosed. That reduces survivability by 1/2, so now I'm looking at 15%. Mine is classified as Stage 4.
A bit more research indicates that of those who don't survive 5 years, most die in the 6 month to 2-year range. That's what I'm staring straight in the face.
Next..."You didn't schedule any more tests or anything because of WHAT??"
src="http://www.statcounter.com/counter/counter_xhtml.js">
Getting started on stuff now
Today was kind of a bummer. I learned an additional surgery has been scheduled. Tomorrow, I get a PET scan while the docs continue looking for where the cancer is coming from. Friday, I get a sort of exploratory surgery, while the docs look at what the PET shows, keep looking for where the cancer is coming from, and look for the best way to remove the egg-sized lump in my neck.
The person who called me and scheduled the surgery named all the procedures they're doing. It seemed like 4 of them, but maybe the names were really long. I know some of the terms mean neck, and some mean nose, and some mean throat. I couldn't pronounce, repeat, or remember any of the names.
Adding another step that's surgical before starting anything that's on the road to a recovery wasn't good news.
The person who called me and scheduled the surgery named all the procedures they're doing. It seemed like 4 of them, but maybe the names were really long. I know some of the terms mean neck, and some mean nose, and some mean throat. I couldn't pronounce, repeat, or remember any of the names.
Adding another step that's surgical before starting anything that's on the road to a recovery wasn't good news.
Monday, March 09, 2009
This site is taking a new direction
I have cancer.
I am going to give updates to diagnoses, what the docs expect, what I'm experiencing.
I'm going to share the site with a support group that has a similar type of cancer.
There will be some interesting stories, some utter incompetence in the medical community. I'm getting a sense of humor back and still have a sense of irony. I'm going to try to make it an interesting read about a very unfortunate subject.
The next installment will be "From Nothing to 'My Chances of Survival Are What?' in 60 days".
I am going to give updates to diagnoses, what the docs expect, what I'm experiencing.
I'm going to share the site with a support group that has a similar type of cancer.
There will be some interesting stories, some utter incompetence in the medical community. I'm getting a sense of humor back and still have a sense of irony. I'm going to try to make it an interesting read about a very unfortunate subject.
The next installment will be "From Nothing to 'My Chances of Survival Are What?' in 60 days".
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