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.
Sunday, May 30, 2010
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.
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