By Wednesday, it was pretty clear I had no chance of making it through the week. On Monday I thought I could make it. There was no doubt that was wrong on Wednesday. The escalation of throat irritation was worse than it had been in previous weeks.
Thursday morning I asked for a break from my treatments and asked for a feeding tube. As of Fridy at 5:00, I was still trying to get that surgery scheduled. After not having treatments for Thursday and Friday, plus the weekend, I thought I'd be making some level of recovery. That just isn't happening.
I keep dreaming that I can and am eating things. In reality, if I can get two bottles of Ensure plus enough water to keep me from dehydrating, that's a really good day for me. I lost 10 pounds this week. I only lost a total of 4 lbs. in the weeks leading up to this one.
I do not have a clue how to survive another 2-1/2 to 3 weeks of this.
Sunday, June 28, 2009
Tuesday, June 23, 2009
The Vast, Vast Majority of Head and Neck Cancers...
My radiation oncologist was asked by a medical journal to review some small studies of head and neck cancer treatments and to compile a number of studies into one article that included all of them. He recently completed that. Head and neck cancer is the category where my cancer falls.
He said that during treatment, the vast, vast majority of head and neck cancer patients end up on a feeding tube, taking a break from the treatments, or both.
I'm in the last 3 weeks. I always feel like I can make it at the first part of the week. By the end of the week, I'm convinced I've spent a bit too much time on the wrong side of the gates of hell.
If I can make it through this week, and I think I can, then there are only two weeks left. I will get an extra "healing day" (no treatments count as healing days) over the July 4 weekend. That may be the only break I need.
At least I have a target to shoot for. If I can make it through this with no feeding tube and no breaks, then I've done better than the "vast, vast majority" of head and neck cancer patients.
A few people have referred to me as a "tough old bird". That wasn't right. I wasn't near that tough. I will gladly take that title when I finish this. I've learned that a lot of things are just obstacles to overcome on the way to something better. A LOT of things.
He said that during treatment, the vast, vast majority of head and neck cancer patients end up on a feeding tube, taking a break from the treatments, or both.
I'm in the last 3 weeks. I always feel like I can make it at the first part of the week. By the end of the week, I'm convinced I've spent a bit too much time on the wrong side of the gates of hell.
If I can make it through this week, and I think I can, then there are only two weeks left. I will get an extra "healing day" (no treatments count as healing days) over the July 4 weekend. That may be the only break I need.
At least I have a target to shoot for. If I can make it through this with no feeding tube and no breaks, then I've done better than the "vast, vast majority" of head and neck cancer patients.
A few people have referred to me as a "tough old bird". That wasn't right. I wasn't near that tough. I will gladly take that title when I finish this. I've learned that a lot of things are just obstacles to overcome on the way to something better. A LOT of things.
Monday, June 22, 2009
I Thought Things Were Bad - I Was Wrong
I had pretty much hit my tolerance point for pain and the structural integrity of my throat. There are only 3 weeks of treatments left and if things keep getting worse the way they have the last 2 or 3 weeks, I'm going to be way beyond my tolerance threshold. The only thing that worked to provide any type of sleep or pain relief was acetaminophen, which took the pain levels to tolerable and let me get some sleep. My throat sometimes just starts bleeding. The doctor says that's normal.
I thought that was bad. Then I got today's news and now that looks really good. I thought I was about as far down as I could go. Then I found out I was still on a step ladder and now that's been kicked out from under me. Or was that an extension ladder and I was really on the roof?
My liver function numbers went off the charts. The doc didn't say my liver quit, but he was obviously alarmed and I've got orders to not touch a drop of alcohol, no acetaminophen, no narcotic pain medications. Aspirin and ibuprofen were already banned because they can mask infections and my immune system is dead. They've killed my bone marrow.
The second doc I saw today thought it was ludicrous to attempt my treatments without pain relief and prescribed a moderate pain reliever that is reasonably safe in my situation.
Here are some possible causes for a sudden jump in the blood counts for liver function:
Uncommon side effect of the chemo. I have no information if this is considered permanent or temporary.
Overload of weakened liver function. This would be a combination of chemo weakening the liver function and then acetaminophen overloading the liver. Acetaminophen is tough on livers and if there is liver damage from acetaminophen, it freaks doctors out because they don't know what to do. They don't have a pill for it. This seems to be sometimes permanent and sometimes temporary.
A cancer that has spread to the liver. The first doc today ordered a CAT scan to include that area. At that time I wasn't aware of the cancer connection to the liver function tests, so I wasn't asking any questions.
They're not changing any of my treatments to see if that can restore liver function. I've said earlier that as long as they think they can keep me alive, nothing is off limits. If it's the chemo that's destroying my liver function, they're willing to risk my going for a month with impaired or no liver function.
If they think I may end up needing a liver transplant, well that's a way to keep me alive, so risking that is certainly within their treatment guidelines. None of my doctors have said that, but their attitude, arrogance, and lack of explaining anything is way beyond disgusting. I'm starting to get a pretty good read for which ones care about their patients and which ones just see the almost unlimited dollars available through insurance.
A slimeball, ambulance-chasing lawyer is a gentleman and a scholar compared to a cancer doctor who only cares how much money he can soak out of the insurance company before either the cancer or the treatments kill the patient. So far, I've found 2 out of 5 doctors I've dealt with to be in the money-grubbing category. I've only had one appointment with each of them and it will stay that way.
I thought that was bad. Then I got today's news and now that looks really good. I thought I was about as far down as I could go. Then I found out I was still on a step ladder and now that's been kicked out from under me. Or was that an extension ladder and I was really on the roof?
My liver function numbers went off the charts. The doc didn't say my liver quit, but he was obviously alarmed and I've got orders to not touch a drop of alcohol, no acetaminophen, no narcotic pain medications. Aspirin and ibuprofen were already banned because they can mask infections and my immune system is dead. They've killed my bone marrow.
The second doc I saw today thought it was ludicrous to attempt my treatments without pain relief and prescribed a moderate pain reliever that is reasonably safe in my situation.
Here are some possible causes for a sudden jump in the blood counts for liver function:
Uncommon side effect of the chemo. I have no information if this is considered permanent or temporary.
Overload of weakened liver function. This would be a combination of chemo weakening the liver function and then acetaminophen overloading the liver. Acetaminophen is tough on livers and if there is liver damage from acetaminophen, it freaks doctors out because they don't know what to do. They don't have a pill for it. This seems to be sometimes permanent and sometimes temporary.
A cancer that has spread to the liver. The first doc today ordered a CAT scan to include that area. At that time I wasn't aware of the cancer connection to the liver function tests, so I wasn't asking any questions.
They're not changing any of my treatments to see if that can restore liver function. I've said earlier that as long as they think they can keep me alive, nothing is off limits. If it's the chemo that's destroying my liver function, they're willing to risk my going for a month with impaired or no liver function.
If they think I may end up needing a liver transplant, well that's a way to keep me alive, so risking that is certainly within their treatment guidelines. None of my doctors have said that, but their attitude, arrogance, and lack of explaining anything is way beyond disgusting. I'm starting to get a pretty good read for which ones care about their patients and which ones just see the almost unlimited dollars available through insurance.
A slimeball, ambulance-chasing lawyer is a gentleman and a scholar compared to a cancer doctor who only cares how much money he can soak out of the insurance company before either the cancer or the treatments kill the patient. So far, I've found 2 out of 5 doctors I've dealt with to be in the money-grubbing category. I've only had one appointment with each of them and it will stay that way.
Monday, June 15, 2009
Treatment Update
I'm just about finished with 3 weeks of the 7 weeks of treatment I've got scheduled.
I skipped writing about it for a week because I'm trying to keep this as positive as possible. There wasn't anything positive last week. The bad stuff started building up quick and that left me with a pretty negative outlook.
Now that I'm getting used to things getting worse (going to hell in a hand basket is more accurate), let me catch you up on what's going on.
Sore throat - I thought maybe I'd get lucky and get a mildly sore throat. Nope. They didn't lie about not being able to swallow water either. I'm not there yet, but if the rate of increasing soreness continues, it's only a matter of time and certainly less time than the 4 weeks of treatments I have remaining.
Sore mouth - It hurts to eat catsup. There's enough vinegar in catsup that the acid in the vinegar touches the sore spots in my mouth and creates a burning sensation. Orange juice - you've got to be kidding. I'm starting to have trouble with orange-flavored toothpaste. The 20 or so places in my mouth and throat where I had little cuts for biopsies are all very sore.
Loss of taste - I have two taste sensations: 1) Nothing. 2) Burning. One odd thing I've noticed - I can still taste pancakes. I can't taste the butter or the syrup, but I can taste the pancakes.
Loss of appetite/digestive function - I'm almost never hungry. When I eat, I fill up quickly and stay full for a long time. It takes me about an hour to eat a typical meal and I am stuffed from that for at least 6 hours.
My diet - I try to get about 1,000 calories a day from "normal" food. My "normal" food is pudding, mac-n-cheese, yogurt, wienies, refried beans, vegetables in sauces, homemade applesauce, pumpkin pie - I think you get the idea here. Then I try to get about 500 calories a day from formula that's normally used with feeding tubes. An 8-oz can of that stuff has 250 calories and LOTS of nutritional goodies. Even with no working taste buds, I can tell that stuff is on the nasty side.
Acetaminophen dulls the pain in my throat enough to get rid of the constant stabbing and burning sensation I was having last week. The PM variety seems to help me get to sleep, so I'm successfully getting sway from the narcotic and more addictive medications I had found effective in those areas.
The end of this week (June 19) is one day past the half-way point of my treatments.
I skipped writing about it for a week because I'm trying to keep this as positive as possible. There wasn't anything positive last week. The bad stuff started building up quick and that left me with a pretty negative outlook.
Now that I'm getting used to things getting worse (going to hell in a hand basket is more accurate), let me catch you up on what's going on.
Sore throat - I thought maybe I'd get lucky and get a mildly sore throat. Nope. They didn't lie about not being able to swallow water either. I'm not there yet, but if the rate of increasing soreness continues, it's only a matter of time and certainly less time than the 4 weeks of treatments I have remaining.
Sore mouth - It hurts to eat catsup. There's enough vinegar in catsup that the acid in the vinegar touches the sore spots in my mouth and creates a burning sensation. Orange juice - you've got to be kidding. I'm starting to have trouble with orange-flavored toothpaste. The 20 or so places in my mouth and throat where I had little cuts for biopsies are all very sore.
Loss of taste - I have two taste sensations: 1) Nothing. 2) Burning. One odd thing I've noticed - I can still taste pancakes. I can't taste the butter or the syrup, but I can taste the pancakes.
Loss of appetite/digestive function - I'm almost never hungry. When I eat, I fill up quickly and stay full for a long time. It takes me about an hour to eat a typical meal and I am stuffed from that for at least 6 hours.
My diet - I try to get about 1,000 calories a day from "normal" food. My "normal" food is pudding, mac-n-cheese, yogurt, wienies, refried beans, vegetables in sauces, homemade applesauce, pumpkin pie - I think you get the idea here. Then I try to get about 500 calories a day from formula that's normally used with feeding tubes. An 8-oz can of that stuff has 250 calories and LOTS of nutritional goodies. Even with no working taste buds, I can tell that stuff is on the nasty side.
Acetaminophen dulls the pain in my throat enough to get rid of the constant stabbing and burning sensation I was having last week. The PM variety seems to help me get to sleep, so I'm successfully getting sway from the narcotic and more addictive medications I had found effective in those areas.
The end of this week (June 19) is one day past the half-way point of my treatments.
Tuesday, June 02, 2009
Just Some Ramblings
1 week of chemo and radiation is over and I'm feeling great. I need more sleep than normal, but that's it. The medication gets interesting.
I get medication for the side-effects of the chemo. Then I get medication to counter the side effects of that medication. There's also a little medicine-shuffling to try to avoid getting addicted to anything. I have 3 medications I've got to watch. I can shift between some and skip them sometimes, so I should be able to avoid any addictions coming out of this.
I had a little bit of research done for me that goes beyond what's available on the Net. I have a contact with access to some very extensive medical databases. We were looking to see if there was a basis for a second opinion that might differ from what I was having recommended.
We went looking for the type of cancer I had, having it spread to the neck, not being able to identify a source site, and then not having radiation. With all of those factors put together, there are no reputable published studies. That pretty much eliminates any basis for a second medical opinion that could disagree with the treatment I'm getting.
When the research went nowhere, my contact got a hold of the person considered the #1 authority in the nation on my cancer and asked for the best available contact in my area. The name that came back was my radiation oncologist.
I get medication for the side-effects of the chemo. Then I get medication to counter the side effects of that medication. There's also a little medicine-shuffling to try to avoid getting addicted to anything. I have 3 medications I've got to watch. I can shift between some and skip them sometimes, so I should be able to avoid any addictions coming out of this.
I had a little bit of research done for me that goes beyond what's available on the Net. I have a contact with access to some very extensive medical databases. We were looking to see if there was a basis for a second opinion that might differ from what I was having recommended.
We went looking for the type of cancer I had, having it spread to the neck, not being able to identify a source site, and then not having radiation. With all of those factors put together, there are no reputable published studies. That pretty much eliminates any basis for a second medical opinion that could disagree with the treatment I'm getting.
When the research went nowhere, my contact got a hold of the person considered the #1 authority in the nation on my cancer and asked for the best available contact in my area. The name that came back was my radiation oncologist.
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