Recovery Is Going Great

The tracheotomy tube is out. The feeding tube and IV tap (portacath) both go away next Tuesday (Sept. 1).

Food now includes: bacon, eggs, cantaloupe. burritos, pork chops, mashed potatoes, and more stuff.

I still need a lot of sleep and I'm not gaining weight. My metabolism is cranked. I'm getting an average of about 2,600 calories a day. I don't know what my body is doing with all the sleep and food. The only thing I can imagine is that my body has everything on overtime and double shifts fixing stuff that the chemo and radiation broke down.

My neck is not pretty or something anyone would want to see. The scar from the original surgery is big and ugly, but the sunburn effect from the radiation has my entire neck area rough, red, and obviously irritated. The scar reacted by turning pretty much dark and bright red.

I'm going to try for 6 hours a day at work for the next 2 weeks. The only problem I see is my sleep requirement, which is still in the 12-hour range.

I am thrilled with the progress I'm making. It seems I'm doing better than any of the doctors expected. My throat is still sore and swollen. Going into allergy season is a little tough. The combination of some allergy reactions with the condition of my throat causes some complications.

Real Food

I'm getting all my food by mouth and starting to eat real food. I can't put much variety into my diet yet, but...

Meat - Grilled fish. That's the only meat I can eat, but I like fish. The next attempt is looking like crock pot pork chops. They cook 4 hours and come out very tender and moist.

Vegetables - About anything in small servings.

Carbohydrate - Ramen noodles. That's about it from the carb group.

Breakfast - Fried eggs.

My next food target is a Chinese buffet in about 2 weeks.

Work is tougher than I thought. I still need about 12 hours of sleep a day. I was expecting the early phases of recovery to be mainly eat, sleep, and work. Right now it looks like an 8-hour day is going to require me to be in bed around 8:00 or 8:30. That's going to be quite a change for my body. Fortunately, my body clock is so messed up it has no clue what's going on.

Tracheotomy tube comes out Thursday. I should be scheduling the rest of the little patch-up stuff this week.

Hi Ho! Hi Ho!! It's Off To Work...

I've been cleared to work 4 to 6 hours a day. That's going to be reviewed around the end of August and I'm expecting to be at full 40-hour weeks by the middle of September. I'm glad I'm able to start off slow like this. So far, in the 2 days I've worked, I've been asleep within a half-hour of getting home.

I needed a chance to get back to work. It's one of the biggest signs that my life is beginning to return to normal. It's great to have something to do other than sit around the house.

The healing seems to be going faster lately. I'm within one small meal a day of getting off the feeding tube completely. My meals are all liquid or real soft stuff, but getting all my food by eating it is the next big step. I have to watch calories to make sure I get enough.

I have changed my standards, but I can honestly say, "I feel good".

Slow, But Steady, Healing

This healing process is going to be long. I can notice improvement day-to-day, but it's small improvements. Today's improvement was that eating a banana was easier today than it was yesterday.

My diet for the next few weeks isn't very appetizing, but I've found enough nourishment and calories in forms I can eat that I can start working on getting rid of the feeding tube. I've tried hamburger in a sauce and I've tried hot dogs. I guess I'll be a vegetarian for a few weeks, because that didn't work well.

I've got an appointment with the Doc who is responsible for my tracheotomy tomorrow (Monday, 8-17). We're going to have a discussion about this tracheotomy tube. I'm ready for them to pull it out and sew up the hole. Doc wants it in another couple of weeks. I think it's doing more harm than good.

I'm feeling good enough that I did a bunch of reasonably strenuous yard work this weekend. I got rid of all the volunteer trees that are in my back yard. Only a couple were over 10' tall, but that was still a lot of work for someone who's been inactive for a while. I also cleaned up all the spots that the mower can't reach. I enjoyed it and the yard looks lots better.

I hate even the hint of a thought of being a vegetarian, even for a single day. I'm a carnivore.

This "Recovery" Thing Could Take A While

I wasn't expecting much progress the first week, so I'm not disappointed. I am starting to burn out on being sick or whatever it is that I am. This is like cabin fever, except in the middle of summer.

I have gotten to where I can swallow water. I couldn't do that the last week of treatments or the first week after they were over.

I know body piercings are popular now, but I'm ready to get rid of some of mine. I'm starting to get an idea of when that's going to happen.

The feeding tube comes out 3 - 4 weeks after I'm eating comfortably. That could be a while. I don't like the removal method. It's basically grab the tube and pull. I was told to expect some pain. That thing is in there pretty good. I forgot I was hooked up once and went to answer the phone. The tube is implanted tight enough that I can pull over an IV stand (the thing they use for IV's in hospitals) without budging the tube. That's going to be one pretty hefty "pull".

The tracheotomy tube comes out after all the swelling in my throat is gone. I hope that means the swelling from the radiation and doesn't include the swelling from forcing a tube down my throat and doing the tracheotomy. Neither would be considered short-term, but the swelling in my neck from the surgery is going to be around for quite a while. What my body would normally use to get rid of that swelling isn't there any more. I know I'm going to have a tracheotomy tube long enough that I'm getting this one changed out for another one that's more comfortable. That happens Wednesday. This is really minor. Just pull the tube out (that's a daily routine any way) and then drop in a few stitches to close the hole.

Then there's the portacath - Per Wikipedia:

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

I imagine that can come out about any time. At least there's SOMETHING I can get rid of in the near future.

The portacath removal has been described as an office visit, a small incision (about 3/4") and then just pull it out. Since that thing is connected to my aorta I'm a bit concerned about, "just pull it out". I'll be glad when that one's out of the way.

Treatments Are Over!

I had my last radiation treatment today. Let the healing begin.

It's kind of strange to go 5 months with a series of doctors and you know that every one of them is going to cause pain. Sometimes more of an old pain. Sometimes a new pain. When that was finally over, it took a couple of hours to realize they're going to stop testing my pain threshold limits.

My experience is that discomfort from a radiation treatment increases for about 2 days after the treatment, so I've still got 2 days of things getting worse.

The predictions are either 3 to 4 weeks or 4 to 6 weeks until I'm interested in eating by swallowing food. That's an important step. I'm struggling to put on any weight on the all-liquid diet and I need 6 or 8 pounds. I can't have the stomach tube taken out until I'm eating 100% by mouth.

I probably shouldn't have the porta-cath (under the skin device that attaches to my aorta for IV treatments) out until I know there will be no complications from anything else. The tracheotomy tube will stay in until all the swelling is gone from my throat, which should be about the same time as when I start eating by mouth.

There are still 3 minor surgeries I need. I'm not forgetting that it was a very minor and routine surgery that flat-lined me. I've got a lot of healing to do.

There is good news. I do not have a trace of cancer, neither pre-existing, regrown, nor started in another location, not any kind or type. I'm currently in 100% remission. All cancers can recur, but the type I had (or have) isn't as aggressive as some at recurring.

My radiation oncologist was Dr. Cross at Wesley. He's the guy who decides how much treatment my body can tolerate and then seems to turn the treatments up a notch or two just to be on the safe side for a good kill of the cancer cells. I enjoyed being his patient even though he gave me the guided tour of what Hell can do to a mouth and throat. I better straighten this out again. I did not have cancer of the throat or the mouth, Mine was a neck cancer. Unfortunately, my throat and mouth seem to be in the exact places where the neck gets its treatments.

But I digress. Dr. Cross had another of his observational comments that say things better than any other way of saying it. This time it was, "In a year or two, you're not going to look back at this and laugh, but in a year or two, you are going to look back at this. That's really what we were trying to get out of all of this."

2 More Days - or is it Just One?

I've lost track of when my radiation ends. I know they snuck an extra couple of days in on me due to the time off I had in the middle. There's either one day or two days left. I've already finished the chemo treatments, so it's time to let the healing begin.

One doctor said my throat can start healing in a week or two and the healing can be surprisingly rapid. Another doctor says I should expect four to six weeks before I can eat again.

The tracheotomy tube gets changed for a more comfortable one in a week or two. That's the time frame I was expecting for having the opening sewn up, but they want to leave the tracheotomy there until all the swelling in my throat is gone.

I'm going to be totally dependent on the feeding tube for at least a couple of weeks and I expect it will be 3 or 4 weeks before I will be able to eat anything substantial by swallowing it. I've got 8 or 10 pounds I need to gain and it's really hard to do that on a feeding tube.

A Chinese buffet or a Tex-Mex meal seems like such a treat. Unfortunately, it will be months before I will be able to taste things completely. That makes it hard to enjoy eating.

It's been 5 months since I was diagnosed. In those 5 months there have been about 4 doctors taking turns at seeing how bad they can make me feel and how close they can come to killing me. I've mostly had great quality and highly skilled doctors who are very good at what they do. Unfortunately, pain and discomfort are a big part of what they do. They're VERY GOOD at it.

I Guess I Deserved an Uneventful Week

Not much of interest or significance happened last week, except for knocking one more week off the treatment phase.

I'm down to under 2 weeks of radiation and one chemo treatment, and then this phase is done. I've been able to take some food through my mouth and I've actually gained about 2 pounds by supplementing the liquid food that way. I'm still down 14 pounds from when all this started, but I'd like about 8 of that to stay away. That means I'd have to start exercising after the treatments are done, so I guess I'll probably just gain it all back.

They've started a new method of radiating my neck. They're going from different angles to minimize damage to stuff they don't want to injure - like my spinal column. The new angles are hitting new spots in my throat, so I'm getting the sore throat in new places. I doubt I'll be able to take any food by mouth after this week. After the radiation is done there will be a couple of weeks of healing before I can consider moving all my eating to my mouth instead of that damn feeding tube.

There was some good news this week. There is absolutely no indication of any recurrence and absolutely no indication of any new growth, spread, or metastasis of any of my original cancer. One of the problem patterns for this type of cancer is that surgery and treatment never get it cleaned up to the point I'm at. If the cancer is still active after surgery and treatments, it's pretty much a downhill fight for a couple of years.

Another piece of good news. I already knew that recovery time for my treatments is considered a year. I was told that eating should return to pre-treatment ease, taste, and swallowing in that year. That was an area that had potential to be permanent, so I was really happy to hear that.

My strength and stamina are improving at a decent pace. I'm going through 1,600 - 2,400 calories a day and not getting much exercise. I guess some of that food is storing up energy in what muscles I have left. This would be a great opportunity to do some exercise, move more food energy into muscle energy, kick my metabolism up a notch, keep some weight off, and a bunch of other great things I could do for my body. I'm afraid my earlier comment about exercise will still win out over even all these advantages.

Speaking of Tough Weeks

There was a complication in my surgery to have the feeding tube inserted. The complication was having my heart and breathing stop, my throat swell shut, calling EMS to revive me in an operating room, and then transport me through a couple of parking lots at Wesley to get to the ER, so the doctors could finish saving my life and inserting the feeding tube.

Yes, I died from having a feeding tube inserted. I'd rather not go into all the details, because there is some inevitable "he said, she said" stuff in there. The only thing I'm certain of is that I was given a sedative that has killed me before, and I wasn't wearing an allergy bracelet when I finally came to after the surgery. That's the first surgery I've had that didn't have the bright red allergy bracelet.

I've recovered from death pretty well. I might point out that when the firemen show up and you're not breathing and your heart isn't beating, they don't seem to care much if they hurt you while getting that stuff going again. I have some sore ribs and my chest is on the tender side. It's not like screaming in agony to do a situp, but that's not far removed from where I'm at.

That led to the tracheotomy. I have this wonderful hole in my throat that lets air go straight into my lungs without going through my throat. That hole will remain there until all the chemo and radiation treatments are done.

At about this point in the whole process, the doctors began working on why I went "code blue". They had me breathing, an airway opened, and my heart was beating. They called in heart specialists. Nothing wrong with my heart. They called in lung specialists. Nothing wrong with my lungs. At least I got some free checkups. Eventually they figured out it was an allergy to sodium pentathol. This is the second time I've died on an operating table when sodium pentathol was involved.

I'm healed up pretty well again. I start back up with radiation and chemo next Monday (July 13). There are 3 weeks of that left.

I'm on a feeding tube, which pretty much restricts my mobility. I have a humidity-producing machine that I use a couple of hours a day to try to keep my lungs hydrated. My lungs are producing a lot of "stuff" that I have to cough up. If my lungs get too dry, that coughing gets pretty difficult and painful. The sound of that machine is like running an air compressor inside the house.

Right now I've got 3 weeks of treatments and pretty much being restricted to my couch. After that, I get the feeding tube out, the trach closed up, the catheter removed (that they're using in place of cozens of IV insertions spots). Then I should be on the road to getting back to "normal". It's been an ordeal so far.

What a Tough Week

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.

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.

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.

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.

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.

The Treatments Begin

I'm on a 7-week schedule. Radiation every day. The radiation treatments last about 5 minutes. I've completed 3 treatments, so that leaves only 32 remaining. Chemo every Monday. The chemo treatments are 4 to 5 hours.

I'm on what's considered light doses of both radiation and chemo, so I may have a better than average chance of minimizing the negative effects of treatment. There is no guarantee. The only thing that's consistent in what I'm hearing is that different people react differently to the treatments.

The chemo is all through IV's and my veins aren't real good at holding IV's. I'm getting a very minor surgery to implant an IV in my chest. There was more discussion of the potential surgically implanted feeding tube. I told my oncologist I had a month supply of liquid food designed for use with a feeding tube and I was going to use that as long as I could swallow. He said that was an excellent idea and encouraged me to ask for more if I ran out.

I've already covered the side effects of the radiation, and nothing has changed with that. The common side effects of the chemo are pretty tame. Nausea, vomiting, and diarrhea lead the list of the nuisance effects. Hair loss isn't even a nuisance. One of my chemo drugs lists "sore mouth and gums" as a common side effect. The other chemo drug lists the same thing as an uncommon side effect. My radiation treatments guarantee the same thing at nasty levels. I suspect my mouth is going to get way past sore and painful.

The uncommon side effects of the chemo drugs go past nuisance and reach life-threatening (that's my interpretation and nothing the doctors have said). Changes in kidney, liver, and heart function are listed. That's not a biggie. I figured out long ago that if there's something that increases my chances of surviving the cancer and doesn't quite kill me - the doctors are giving that to me.

The scariest side effect - even though it's listed as uncommon. "Changes in fertility". I've managed to live 60 years without having any kids. The last thing I want right now is a change in my fertility.

Recurrence Dangers

Recurrence is a biggie.

If recurrence happens in the left side of my neck:
1) I've already lost the jugular on the right. The one on the left is handling the load for the one that used to be on the right.
2) I've lost the thyroid and parathyroid on the right. The ones on the left can handle the load as long as they exist.
3) Vocal cords seem to have a major attraction for cancer. Mine are fine now. My hoarseness may be long-lasting and possibly permanent, but I still have good vocal cords. Recovery of vocal capability is still possible.

If recurrence happens in my lungs or a couple of areas in the throat that are hard to operate or radiate:
1) Bye - It's been good knowing you. I enjoyed the time we had together.

Neck cancers have decent survivability numbers (60% at 5 years). The fatal ones tend to be quick (6 months - 2 year survival). After the quick ones, recurrence is the major factor in 5-year mortality.

Difficulties With Getting A Second Opinion

I appreciate the comments that unanimously urge me to get a second opinion. It's not just comments here, it's in emails and personal conversations. There are problems.

The first problem is that my surgeon (Wichita Clinic) has no experience with bypassing radiation in a case like mine. He's never seen that in his medical practice, which might be totally in this area. He has no financial interest and recommends the radiation.

My oncology group is affiliated with St. Francis. My radiation oncologist is affiliated with Wesley. That's a major chunk of all medical practice in Wichita. It's probably about all that work on my situation. I'm skeptical of finding anyone in Wichita who would disagree with the recommendations I've received. I doubt there are any local specialists who didn't either teach the doctors I'm dealing with, or were taught by the doctors I'm dealing with. The chances of a local and disagreeing second opinion are slim.

The second problem is timing. One thing that's never in question is that if there is radiation after surgery, the time interval between the surgery and the radiation is important to survival rates. I'm upset that I'm only getting the information about the permanence of some side effects at the eleventh hour, but it is the eleventh hour.

I'm likely to have to go out of town to get an opinion different than I'm getting. If the time to do that would delay the beginning of treatment, and treatment was recommended, all I accomplish is to reduce my survival numbers. If I get a second opinion and it disagrees with the local recommendation, then I have to decide which option I want to pursue.

I have arranged access to some medical research regarding my situation that goes way beyond what I can find on my own. It's from a source that is considered "gospel" in the medical community. It is more information than my surgeon had when he described what would happen. It is probably more current research than my radiation oncologist relies on. He has reminded me repeatedly of his 20-some years of experience.

I ran into someone I trust who has access to a huge medical research database that is a pretty pricey subscription. It's a research database that doctors normally consult for research and information from studies that affect their cases. If there is a basis for a second opinion that differs from what I've got, I'll know about it.

The company I work for has another division that owns that database.

The Decision

I signed the consent forms for the radiation. The treatments start next Wednesday. I can still change my mind or chicken out. All I have to do is not show up for the appointment.

I told the radiation oncologist about my concerns. He told me I could quit any time I wanted, and if I quit now, "...you will die. I guarantee it. Your neck is contaminated. There is no reasonable expectation that everything was removed..." It went on longer, but he pretty much had me at, "You will die. I guarantee it".

I was reminded of a line from a Clint Eastwood movie, "Do you feel lucky"? I'm thinking maybe I've already used up a lot of "lucky".

According to this doctor, recurrence is different after surgery. There is a lot of stuff removed that previously was a barrier to the spread of the cancer. If it recurs in the operated area, it can spread to a lot of areas very quickly. That makes sense. It also makes sense that by the time any lump would be noticed, the spread could be disastrous. Besides that, he pretty much had me at "You will die. I guarantee it". He even had stories to tell of patients who died within a year after refusing radiation.

Without an identified cancer origin, they nuke every potential source and every possible location of suspected spread. That includes both sides of my neck, not just the right side. The radiation is targeted, but the target area is my neck and throat. That's a big target.

The danger of contracting a cancer from the treatments is real, but it's long-term. At the levels I will receive, it can be significant in 30 - 40 years. I've got medical consensus on that. The 30 - 40 year time frame is not significant in my situation (old fart).

They can save one saliva gland (out of six). Right now I have 5 saliva glands. I lost one in the surgery. It's real easy to notice the difference. The one I lost lubricated the right side of my throat during swallowing. Losing 5 will make eating and swallowing difficult. That's forever.

At least, if I can save one saliva gland (it's one of the big ones), I might be able to maintain the mouth chemistry that's produced my indestructible teeth. I've never had a cavity or dental problem in a permanent tooth.

This was (and still is) a nasty decision. One option has the possibility of death within a year. The other has permanent changes in the ability to enjoy a meal - and a bunch of other nasty stuff. I've decided not to risk my life at this point. That means I've decided to make some quality of life compromises.

It's Time For Some Questions

The dental oncologist is the first medical person I've met that I don't trust. The meeting with him went poorly. It was all about how much money I'm going to spend with him, how he's going to charge me, and some really bad news about the rest of my life. Of course, the rest of my life will be much worse if I don't throw a bunch of money his way.

What I don't understand is that in all of my research and all of my medical consultations up to this point, why have I never run into all these lifelong problems? How did some major quality of life issues get ignored for over two months?

The type of radiation I'm getting is gamma ray. That's the most carcinogenic "stuff" known. It's what causes cancer in victims of radioactive fallout. I'm not supposed to worry about the cancer risk, because the beam of gamma rays is focused tightly on a specific area. There's virtually no danger of gamma ray exposure anywhere other than the target area. I still have to be monitored the rest of my life for cancer in the target area. The entire group of doctors keeps forgetting to mention that until I bring it up.

That should be enough background to cover the story from the dental oncologist.

My saliva glands will be killed by the radiation, resulting in difficulty tasting, chewing, and swallowing. The loss of saliva will remove my body's natural defenses against tooth decay. It appears I will have ongoing dental problems the rest of my life or until all my teeth rot out, whichever comes first. If any of my teeth decay and have to be removed during the course of the radiation treatments, it can be up to a year before my mouth is healed well enough to be fitted with any false teeth. Remember this bit about the sore mouth. It comes up later.

The muscle I use to close my mouth will be scarred by the radiation. That muscle has to stretch when I open my mouth. The scarring will make opening my mouth rather painful and can result in permanent inability to open or close my mouth. There is a device I can buy from the dentist and a series of painful exercises I can do with the device that will minimize the chances of that happening.

There was more, but by the time I heard that much, I had some questions. The first was about killing my saliva glands. The answer was that the radiation would kill them. Everything I heard was that the saliva loss was temporary. No, the saliva loss was permanent. One saliva gland is on my upper jaw, was that one going to get killed too? Yep, count it as gone.

There was no point in pursuing that line of questioning. I got told my saliva glands would die and this doctor confirmed it twice. Once with the question about permanent saliva loss and once with the death of my upper saliva gland.

Remember what I said earlier about that targeted beam that only hits the bad spots? There are 6 saliva glands 3 on each side of your face. They range from just behind your chin to just in front of the middle of your ear. Either that target area isn't really tiny, or I'm getting lied to about the permanent damage, or my target area is "everywhere" since there's no currently identified location that needs radiation.

The scarring of the muscle is another clue. I checked where there could be a target that would nail a muscle and even a single saliva gland. I found that. It's in the area where the tonsil used to be. That tonsil is gone. The radiation oncologist thinks that was the undocumented source of the cancer. The surgeon disagrees. There was not a trace of cancer found in that area that wasn't the easily identifiable lump.

If the target is the former tonsil, how did that become the target? Is it the radiation oncologists' hunch that determines the target?

My mouth is going to be so sore from the radiation that I'm forbidden to drink orange juice (because of the acidity) or eat corn chips (because of the possibility of poking and damaging a sore spot). The dentist wanted to schedule a deep cleaning of my teeth. That's one that goes into the gums. He gave me the schedule for that. I told him that was during the time I would be having my radiation treatments. He told me that was okay - it didn't cause any problems.

WAIT A MINUTE! My mouth is going to be so sore that eating a corn chip is forbidden, but digging into my gums with a metal cleaning tool is okie-dokie? One of those two has to be wrong!

The list of life-long problems from the dental oncologist includes: No alcohol or caffeine (dries the mouth too much), no fruit juice (the acid attacks the teeth), limit eating to foods with sauces or gravies, no spicy foods, no acidic foods, etc.

The literature for the device to exercise my jaw muscles mentions that some people who haven't used the device have lost the ability to communicate orally. Give me a stinking break. If that was a realistic expectation at even the lowest possible level of occurrence, that would be all over the medical literature, not just the sales literature.

I'm considering canceling the entire radiation therapy. There's no identified target for the radiation. The side effects are brutal. I've hit the point where I'm clearly getting bad information that seems more directed towards my purchasing medical procedures than towards my long-term quality of life and well-being.

I'm getting information on the prognosis of people who have not had followup radiation after the type of cancer and surgery I had. I've found several sources, including the Mayo Clinic, who do not use radiation in my situation.

My surgeon said that if I elect to skip radiation, and if the cancer returns, he could always go back in, cut it out, and then I'd be exactly where I am today. That sounds like a decent option.

More Research

I knew that I lost my internal jugular vein. I figured there was a jugular vein and the internal jugular vein was probably a small branch. That's wrong. There's an internal jugular vein and an external jugular vein. The external jugular vein is the little branch. The internal jugular vein is what is commonly referred to as the jugular vein.

Man! I didn't think it was possible to remove a jugular vein, but my right one is gone.