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.