Unexpected Good News

I had my monthly checkup with my surgeon today. There was something I had to tell him to get his opinion.

I found a water swallow test on the Net at a medical web site that's been very good. I trust info there. The test is simple. Drink some water. Did you cough? No - you pass. Yes - you fail. Then I applied something I remember from my one appointment with my speech therapist: Had I ever tried eating or drinking with my head in a different position - like pointing my chin toward the injured side of my neck and lowering it?

In a normal swallow - I failed the test, so I got more water, turned my head to the right and lowered my chin. That worked. No cough at all.

Over the weekend I tested my new swallowing position with tea, beer, and coffee. All were successful. No coughing. So, I fessed up to my doc and told him I had been cheating a bit.

I thought I was going to get the stern speech and reprimand. Instead, my doc was ecstatic.

When my doc was in training, one of the two doctors he worked with used the swallow test I had found and had his patients try different head positions until they found a way to swallow successfully.

I am now cleared to take all fluids by mouth. Encouraged is a better word than cleared. Ordered by the doc is probably still more accurate. Plus, he wants me to start trying some eating. He recommended starting with puddings. I'm supposed to try anything and everything. If I cough, stop eating that food until there's more healing.

Then he inspected my throat and ended up sticking his finger down my throat as far as he could reach. He said everything he could feel was normal tissue and previously that area had been mostly scar tissue. Maybe that's involved in my improved swallowing and talking.

I will fail the barium swallow test Wednesday (two days from when this was written). They won't let me "trick" the test by holding my head in a certain position. That will give my speech therapist information on exactly where and how my swallow leaks into my lungs when I swallow in a normal position. Then she can devise exercises to strengthen the muscles involved and gain flexibility where it's needed.

I imagine scar tissue is still involved in my swallowing. Many medical procedures leave scar tissue that must be broken down before a full range of motion can be achieved. It's just a bit different to think in terms of exercising your tongue to break down the scar tissue as opposed to exercising a shoulder to remove scar tissue from a medical procedure there.

New Swallow Test Coming

The CAT scan was clean. I would have posted sooner if there had been a problem. I've got some scar tissue in my neck. Surprise! Surprise!

My oncologist is so convinced there's not much to watch for that he's moved me to an appointment every 4 months. He's talking about a PET scan next. Those things will show up the slightest traces of cancer before they can be detected by any other method.

When I had the swallowing problem, I decided I needed to be ready for a feeding tube for 1 to 3 months. It's almost 4 months now. I get another swallow test Dec. 30. That's the one my therapist wants to evaluate to determine a rehab schedule. I was hoping I would pass this one and not need the rehab, but that's very doubtful.

I've been "cheating" and drinking tea. It's just a cup at a time and there's very little possibility of bacteria setting up in tea if it got into my lungs. I figure I'm not likely to get pneumonia if a few drops of tea (a day) get into my lungs.

There is a "water swallow" test that's pretty simple. Drink some water. If you cough, you flunk the test - there's water getting into your lungs. If you pass the test, there's an 80% correlation to passing the "barium swallow" test I'm getting next week.

I cough. Not much. It's maybe part of a drop (per swallow) that's getting into my lungs, but that's enough to fail the test. Unfortunately, multiply that by the number of times you swallow to eat three meals a day and "part of a drop" each time becomes significant.

I've found ways I can swallow so I can drink without coughing, but I doubt they will let me get away with that during the real test. Part of the problem is that I'm not used to swallowing. That makes it harder to pass the test as time passes. Even with the water tests I've done, I'm much better with a bit of practice than I am when I start.

Checking In

I wish there were some way readers could tell if I'm not posting because I'm in the hospital or if it's because there's not much to report. This time it's the latter. Not much is really happening.

Last time I saw the doc that did the feeding tube, I was supposed to schedule a colonoscopy. Just routine, no reason for alarm. I forgot. Dang! How could I forget to schedule that?

The swelling in my neck is slowly, slowly going down. I've actually had a "real" voice a few days in the last couple of weeks. I could more or less shout a few times. The voice I'm getting now isn't anything you'd recognize as my voice, but it's a voice, so that's good. Today it went away and all I've got is the half-duck and half-frog sort of hoarse croaking that I've had since the radiation hit.

I've been set up with a speech therapist to work with my swallowing problem. The swallow tests up to this point didn't give her a good definition of the cause of the problem, so I need another. I'm kind of stalling on getting that one scheduled. I figure that if I wait longer, there's a chance that my healing and less swelling could let me pass the test. The doc who did the surgery agrees and thinks I might pass the next test.

Speaking of the doc who did the surgery, I see him once a month. He's examining me for any signs of cancer showing up in my neck or throat. I saw him earlier this week and he can't find anything abnormal. It's his attitude that if I can get through one year after the surgery, that's confirmation that the original cancer is gone. Then I go into monitoring for any new outbreaks. That puts me pretty much back into the normal population for danger from cancer. I'm a little more at risk because I've had it, which is proof that I'm not genetically shielded from cancer risks.

I get a CAT scan next week to take a deeper look. That is routine. In fact, it's routine at 6 months. My oncologist delayed it because he was confident there was no need for it then.

I'm building up some stamina, but that's coming slowly. I still need ridiculous amounts of sleep. Fairly intensive chemotherapy and radiation takes a bigger toll than I had expected.

I've found out that some people with my type of cancer are physically unable to finish the chemo and radiation treatments. If I had known that was an option, I wonder if I would have finished. The last 3 weeks were just brutal. The only attitude I really had during that time was just to survive and see what happened after that.

There are no statistics anybody can find (or would admit they could find) that track mortality if radiation and chemo is either refused or stopped before the recommended series is finished. There has to be something that it's based on, so I guess I did what's best long term. It's nasty short-term - and short-term is about a year.

Bad News on Swallowing

I didn't pass the swallow test. I'm still getting some things I swallow into my lungs.

They're setting me up with a speech therapist. Oddly enough, it is speech therapists who work with swallowing disorders.

This means at least another month before another swallow test. I suspect it will be longer.

The inability to swallow properly didn't appear on any of the anticipated side effects lists from either my doctors or my own research. Difficulty swallowing had lengthy discussions. Getting stuff I swallow into my lungs wasn't mentioned. The doctors really haven't said much about it and I was expecting it to just be a temporary bump in the road.

From the research I've done since I developed the problem, a surgical correction is unlikely. The condition can be permanent when it follows surgery.

I suspect it's related to the swelling (edema) on my neck. Now that some nerves have grown back in some areas I can feel that there is about as much swelling inside my throat as there is outside on my neck. I think that's interfering with my swallowing.

The problem with that is my body has no way of dealing with that swelling. The lymph system that formerly dealt with it was removed. I've been told that the swelling will just go away by itself given enough time. It's been 8 months since the surgery that caused the swelling.

I did some digging into what happens when the lymph system doesn't work. Mine obviously doesn't work on the right side of my neck - it's gone. The most common thing that many people are familiar with is elephantiasis.

Elephantiasis is caused by a parasite that blocks the lymph system and prevents it from functioning. You've probably seen pictures of people in Africa or India with elephantiasis. Guys are often photographed with their private parts in a wheelbarrow and their legs about 3' around.

I am eagerly awaiting the next appointment with my doctor. I have some questions to ask about some subjects he has either dodged around or has been less than direct in answering.

7-Month Checkup

7 months from my surgery and I'm still clean. No cancer. In a little over a month I get a CAT scan to take a closer look. My throat is still complaining about the radiation and I'm about as hoarse as it's possible to get and still talk. No one knows when I'll get recovery of my voice. Some swelling has to work its way out of my throat and the method for removing the swelling was removed in the surgery.

I've got a swallow test scheduled in about 2 weeks. If I pass that, I get to start eating and drinking again. I don't even want to consider not passing it. I'm running short on my patience with this no eating and no drinking stuff.

Even if I pass the swallow test, the doctor that put the feeding tube in will not remove it until I've been eating normally for 3 or 4 months. I've only had about 4 weeks of eating by mouth since the beginning of July. It could be interesting starting eating again. I think I'll start with easy-to-tolerate foods instead of stuff I'm really looking forward to eating again.

Random Ramblings

Oncologist is so confident I'm clean (no cancer) that he delayed my 6-month CAT scan for 2 months.

My body is starting to adjust nicely to the 15 - 20 pound lighter version that it has achieved.

In anticipation of actually eating again, I sometimes give myself 2 cans of "food" at the same feeding to try to stretch my stomach a bit.

This would be a dieter's dream-come-true. Absolute calorie control and control of the size of my stomach. Except for that danged list of "no"s that I've got.

No:
-- Caffeine
-- Chocolate
-- Meat
-- Desserts
-- Adult beverages or soft drinks
-- And on, and on, and on, and on, and...

I can cheat the caffeine and beverages and put them straight into my stomach. Whooppee! There's a reason I like to drink tea or coffee instead of eating No-Doz.

I've discovered I enjoy the drinking part of adult beverages and am not thrilled with the effect that provides. I have the ultimate beer bong, but using it is really disappointing.

Swallowing feels "more right" now than it did. I think I'll get a swallow test scheduled around Halloween and I think I'll pass it.

I still need around 12 hours of sleep a day. That's insane, but I crash if I don't sleep that much, so I may as well plan on it.

I don't ever again want to hear my wife ask me if I want to take a walk and the only place I can go is up and down some hospital corridors. A "walk" is fresh air, sunshine, changing seasons - and all that goes along with that.

Living is the hard part. Dying is easy. I've done it twice and never even noticed.

There's no "Undo" button in life.

I've still got a few scabs on my neck from the radiation burns. The inside of my throat was burned just as badly, so I shouldn't be surprised that my throat is still in the healing stage.

If reading this made you want to go light up a cigarette, then you're missing the point pretty badly.

6 Months From Diagnosis - The First Milestone

I had a visual and manual examination of my throat and neck today. There is no sign of any regrowth of the cancer. Tomorrow I see my oncologist and I suspect he will be scheduling a PET scan to look for stuff that doesn't show up with visual and manual exams.

The cancer part of this seems to be going great and that's the ultimate battle that's going on.

The recovery from treatment isn't going as well. I'm stuck with "nothing by mouth" ( that includes water and beer - damn!) for at least another month. I've got an appointment with my primary care doctor in a little over a week - maybe I can convince her to schedule a swallow test. My neck and throat doctor doesn't think I'd pass one for a while. There's no benefit in having the test unless I pass it. Maybe I should listen to the throat guy.

Greetings From Wesley Hospital

I finally got clearance to get to the one computer Wesley provides for patients and got the password to my blog worked out. Logging in to the blog is not automatic here like it is at home.

The Sunday of the Labor Day weekend I was feeling pretty bad and had a 102 degree fever. That was enough for a trip to the ER. The diagnosis was bronchitis and pneumonia.

Then there was the bad news. They ran some swallow tests and found that when I ate, some food didn't get swallowed and then trickled down my throat and into my lungs. I had pneumonia from stuff I was trying to swallow getting into my lungs.

That resulted in an immediate order that I take nothing by mouth. No food, no water, no medication, nothing. That would not have been a real big deal if I still had the feeding tube, but it's gone. Within a week of removing the feeding tube because I could eat without it, I needed it because of a swallowing problem.

That led to a nice little hospital stay. A week later, the pneumonia is gone. I'm not on any antibiotics, but I'm on an IV feeding method. I had to wait for the pneumonia to clear up and to get off of the pneumonia-related antibiotics before any doctors would put the feeding tube back in.

Now I'm the long-term patient on my floor, and I'm not sick. Replacing the feeding tube is scheduled for Wednesday (9-16) morning. If everything goes as expected, I should be home by mid-afternoon.

I'm anticipating it will be a long time until I eat anything resembling a meal. I need another surgery on my throat and then I'm going to have my swallowing checked pretty vigorously before the doctors let me put anything back in my mouth.

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.

The List of Side Effects and Doctors Keeps Growing

I met with the radiation oncologist again today. He's happy with where everything is at and ready to move on with my treatments. There's still some planning visits before treatments start, and I have another new doctor. This one is a dentist who specializes in tooth decay caused by radiation treatments.

I think this is about what the doctor said today, "Oncologists used to do extractions of teeth that rotted from radiation treatments, but we don't do that any more and prefer having a dentist involved". I hadn't heard of losing teeth as a side effect of the radiation treatments, but my doc rattled that off like he had said it hundreds of times.

The list of radiation effects I'm aware of (so far) is:
1) Loss of immune system (temporary)
2) No sensation of taste (temporary with potential long-term changes in taste)
3) No saliva (temporary)
4) Potential tooth loss (permanent)
5) Sore throat from hell (temporary)
6) Difficulty swallowing (duh!)
7) Need of a feeding tube (temporary)
8) Significant weight loss (gee, you're kidding, right?)
9) Loss of hair growth on one side of my throat and part of one cheek (permanent)

Here's something else I've learned. A tonsillectomy doesn't mean you don't have tonsils. There was a lot of tonsil tissue taken from my neck. The doctor I saw today is convinced that my cancer originated in my right tonsil. That's his interpretation from the pathology reports from the stuff removed in my big surgery.

If that's true, here's my entire medical history:
1) Tonsillectomy
2) Pneumonia
3) Wisdom tooth extraction
4) Cancer originating in a tonsil

That's half of my entire medical history that involves tonsils. The danged things will grow back. Tonsils contain the type of cells identified with my cancer. All the tonsil tissue removed was dead and contained no active malignancies. This doc thinks the cancer started in the tonsil and killed the tonsil. When it killed the outer layer, it broke free in my neck and went nuts. That left a dead tonsil that couldn't even support the life of the cancer.

A tonsil isn't critical to life, and a non-working tonsil has no symptoms. The cancer had a nice little home until it killed its home. Tests for cancer in the tonsil tissue that was removed showed no cancer. This doc's theory is that the origin of the cancer was killed to the point it could no longer support even a cancerous growth, so there was no way to positively identify cancer there.

Doctor's appointments are stacking up now. I'm up to sometimes seeing multiple doctors in the same day. This is to get everybody informed as I go into the next phase of treatment.

This better be the end of it. That's one nasty list of side effects. My surgeon is convinced he got the source and all of the cancer. My oncologist is convinced there's no point in looking further for an origin, as it will never be found. My oncologist radiologist is convinced the source has been removed. The radiation treatments are a contingency in case all those guys are wrong.

That's a lot of exposure to bad things just in case 3 doctors are wrong. but they all think it's worth the risk. It's not their necks on the line here. In a way it is, but not physically. It's my neck on the line and I'm going with the contingency plan. It's brutal, but taking any easy way out here that left any risk would result in even more brutal approaches if that risk turned into something that needed to be dealt with later.

If I have to go through something like this, I'd rather do it once and do it right. I'd rather do it now instead of later. I'm already having problems healing and it's guaranteed I will be older at any time that is "later".

Surgery #3 Cancelled

I am so glad I checked on the meaning of "fistula".

I thought that meant they were going to close an opening in my incision. Yeah, let's do that. I'm ready for that. If I hadn't checked out what they were going to do, I would have signed the consent form.

If I signed the consent form, they were going to open up my neck and look for the hole in my throat. When they couldn't find it, I don't know what they would have done.

I told them there wasn't a hole in my throat any more and I wouldn't sign the consent form until I talked to the doctor. I told the doctor that if he had any reason to think I still had a hole in my throat that we should do the surgery.

The doc gave me a dye test and waited close to an hour to see if any dye from inside my throat got into the area of my incision. The test came out clean. The fistula is healed. No surgery today.

The incision is getting better. Part of what appeared to be healing was "something" that isn't healing, impedes healing, and isn't viable. That "stuff" died. That's normal, but it went from looking like healed tissue to being dead stuff. The doc scraped all the dead stuff out, which created an opening to an infected area that is now slowly draining. The infection seems to be under control, but the dead stuff and the infection created a rather disturbing visual on my neck.

Now it's time to start with the radiation treatments. I've been told to call my Radiation Oncologist and get the treatments started as soon as possible.

The variation of the type of cancer I have doesn't fit into medical knowledge and practice very well. The good news is that survivability is about 100% if what they've found so far holds up to be true. The bad news is that they really don't know how to combat it, so they hit it with everything they know of.

In my situation, they're hitting it with some stuff that's supposed to take care of the "about" part of "survivability is about 100%". The medical effort is totally geared toward survival and doesn't really consider quality of life issues of the survivor.

In my situation, I consider the ability to speak to be a major quality of life issue and a major career issue. I have to sign a "permanent damage to vocal cords" waiver for anasthetic, so if I have permanent loss of vocal ability, I've agreed to it.

I'd like to know what the chances of permanent loss of vocal ability are compared to the increased chances of survival (or something) from the surgery or treatments. I'm not getting that information.

And On to Surgery #3

Thursday, May 14, with a noon check-in time. When they called today, they wanted me to confirm that I was scheduled in to "close a fistula". I should have looked the word up before I agreed to it. A fistula is an opening between two areas that aren't normally connected.

That was 3 weeks ago! 4 or 5 weeks ago my oncologist refused to continue until my surgeon saw me again. The oncologist said he would get in touch with my surgeon and they'd work out an appointment. That did not happen. Instead I ended up with an appointment with the doctor who's going to give me the radiation. He refused to schedule anything, called my surgeon during my appointment, and my surgeon saw me the same afternoon. His scheduler couldn't get me set up for surfery for about 2 weeks.

It was me and not the doctors who found and reported the fistula (or fistulae - I suspect there were two). I was expecting surgery to correct the first one. I measured the progress of that one with how many teaspoons of food ended up in my bandages after I ate a meal.

The latest one was just from drinking water. The leakage was from a higher spot in my throat and it leaked out of a different area of the incisions. That one cleared up 2 or 3 weeks ago, but since I reported it to an oncologist, who called the surgeon, now the surgeon wants to go fix something that isn't broken any more.

The part that's broken now is the incision. The last week or so has been a race between the incision pulling apart and the incision healing. For a couple of days it was pulling apart faster than it was healing. I'm wearing a pretty good-sized bandage when I go out of the house. It's not to protect my neck as much as it is to protect other people's eyes.

I've still got a lot of swelling in my neck. I think the swelling is getting bigger and pulling on the skin. Then the skin gives way at the incision. The swelling is the source of my hoarseness, which is getting worse instead of better.

Pathology, Observations, and Some Research (cont.)

This is a continuation of the previous entry. If you haven't read that one, you might want to before continuing with this entry. I think I pretty much covered what was found during the surgery, so this post will try to go into what all that means.

Recovery from the surgery is a mystery. Today was the first day I didn't have anything leaking from the incision. That's 53 days or about 7 and a half weeks since the surgery. My surgeon is surprised that my voice is still nothing but a hoarse whisper. He thought it should have improved by now.

The only thing any of the doctors seem to know is that they're not going any further until I'm healed better. I have an appointment with the surgeon May 14 to check the healing again. There may or may not be corrective surgery to aid healing at that time.

The surgery done for my problem hasn't really changed in over 100 years. Step 1 of curing my problem relies on a medical procedure straight out of 1903.

It's time to take another look at risk factors. The original diagnosis was a cancer that had spread from another location. That other location had to be a source of squamous cells. The most likely origin location for a smoker is somewhere along the passage the smoke takes: Nose, sinuses, throat, tonsils, larynx, lungs - that stuff. In those situations, it's almost guaranteed to be related to smoking.

I came out 100% negative in all those areas. That pretty much eliminates smoking as a cause of what I've got. I'm still at risk from smoking. The fact that I've had squamous cell carcinoma increases the possibility I will get it again. I need to avoid risk factors in the future.

I do have a small skin cancer on my left ear. It's about the size of the head of a pin. It has not been biopsied, but a visual examination indicates it's probably basal cell, not squamous cell. I've pointed it out to the doctors and they have ignored it.

The lack of any cancerous squamous cells anywhere in my lymph system indicates my lymph system didn't transport those cancerous squamous cells from another location. The absence of any cancer in any area where squamous cells exist indicates there is no source for the cancerous cells found in my neck.

If the source of those cancerous squamous cells in my neck isn't from cancerous cells from another location, how did I get cancer in my neck in cells that don't exist in my neck? Forget smoking as a cause. I never smoked through my neck. Smoking can't be totally eliminated. It's possible the carcinogens in cigarette smoke soaked through my throat and caused mutations in the - wait this isn't working. There are no cells of the proper type even with the osmosis theory. It's time to look at other risk factors.

My situation is identified in 6%-7% of squamous cell neck cancers. All the medical literature (everything the docs learn in med school) says it has to come from another source location. When that location can't be found, they've invented a category of cancer that doesn't actually exist, but spreads to other locations. Uh, yeah, that's what they're telling me I've got. It's a cancer that doesn't really exist, but still manages to reproduce and spread itself.

This "voodoo" cancer, that doesn't really exist, but has spread and is reproducing, really freaks the docs out. It causes them to resort to extremely aggressive tactics to kill the thing that they can't find. The medical technology is straight out of '03 - that's 1903 - not 2003. The medical reaction is straight out of 1950's horror movies. They don't know what it is, so they grab everything they've got and attack.

I've got another theory. It explains how cells that can't exist in a location are found there and become malignant. It's based on virus activity. Viruses can "borrow" genetic information from their surroundings. They can move around, maintain that genetic information, and produce cell types associated with their historic locations.

Moving up on the list (it's mentioned often in the medical literature) is human papilloma virus. Yes, the virus that's well-known for causing several female cancers.

I'm starting to think that a virus that normally resides in an area that is loaded up with squamous cells can pick up genetic material from those cells. If that virus can then find it's way to another part of the body or to another person, it can take the genetic material from its original location with it. That can lead to genetic material for cells to exist in areas where they don't normally exist. If the virus that transported the genetic information is known for causing cancer, it could cause unusual cancers in unusual locations.

Human papilloma virus is identified as a risk factor for squamous cell carcinoma. I think my explanation, which has no medical backing, makes more sense than the "official" medical explanation, which is that I have an unknown cancer that doesn't really exist, but has spread into my neck.

Pathology, Observations, and Some Research

I have squamous cell carcinoma. It's a huge category and a very general classification. It can occur anywhere on the exterior of a body and a few places internally. Chances are you either know someone (other than me) with this diagnosis or someone you know will eventually have this diagnosis.

I need to lay a bit of groundwork so you can understand some things I've learned. If you get tired of reading the techy stuff that is the background, come back later and look for my next post. I will warn you that some parts of this post are - let's say they may be more descriptive than you may care to read.

Squamous cell carcinoma occurs in squamous cells. Squamous cells exist in skin and every other body part that has exposure to the environment. In skin they are a layer just beneath the surface of the skin. This may not be medically accurate, but if you cut yourself and bleed, you're pretty much at the depth where squamous cells are located. Basal cells are located just underneath squamous cells. Basal cells are the origin of skin cancer that is associated with sun exposure and generally considered not real dangerous. Squamous cell carcinoma is most commonly another variation of skin cancer. Squamous cell carcinoma in the skin is associated with exposure to the sun, and specifically to ultraviolet exposure.

Squamous cells play an important role in keeping stuff from the outside world outside of your body. They exist in areas with exposure to the environment, such as sinuses, throat, tonsils, lungs, etc. To put this delicately, any place that something goes in or out of your body, there is an area of exposure to the environment and there are squamous cells. Any area that is considered a mucous membrane has squamous cells.

I had a lump the size of an egg in my neck. It was made up of malignant squamous cells. In the location where I had the squamous cell carcinoma, there are no naturally occurring squamous cells. So, where did the squamous cells come from and how did they become malignant? That was the question facing my doctors.

The first thought was that my lymph system had found a cancer where there were squamous cells, had latched onto some sloughed off cancer cells, and transported them to my neck where they grew. That's very bad. That would mean there was a source cancer somewhere that had spread through my lymph system, and was probably depositing cancerous cells everywhere in my body. The lymph system exists in every part of the body. Cancer that has spread into the lymph system is capable of creating tumors anywhere and everywhere in the body.

There's one more factor that needs to be known before I go into what happened during my surgery and why it had to happen that way. Squamous cell carcinoma is either fairly harmless or incredibly evil, depending on where it's located. If you get it on your ear, they will just remove the tumor and that's pretty much the end of it. When it gets to a secondary location (my diagnosis), it is incredibly aggressive and invasive. It kills about anything it touches.

When removing a malignant tumor, the rule is to remove the tumor and enough healthy tissue around the tumor to be sure that all the malignancy is removed. That rule, the invasiveness of the tumor, and the aggressive approach to controlling an apparently spreading cancer led to my losing a lot of stuff. No malignancy was found in anything other than the obvious tumor.

I lost 1 saliva gland, 23 lymph nodes, the entire lymph duct system on the right side of my neck, the right internal jugular vein, parts of a skeletal muscle, the nerve that controls my right trapezius muscle, a thyroid gland, a parathyroid gland, and a tonsil.

The saliva gland was alive and well, but being invaded and had to be removed to ensure getting everything. That's permanent and affects chewing and swallowing.

The lymph nodes are automatic with squamous cell in the neck. None were malignant or had any cancerous cells. That indicates the lymph system is not spreading the cancer. It also indicates the lymph system probably didn't spread the cancer. That's a crucial point. I'll either get to it later in this post or in a future post.

The loss of the lymph ducts and the internal jugular vein are the source of my swollen neck and hoarse voice. I've got all my arteries intact. Arteries bring blood into an area. Blood moves into capillaries and sort of oozes out so it's available to the tissues. Other capillaries attached to veins grab onto the blood components and return them to the blood system. White blood cells, blood plasma, T-cells, and some other blood components are released by capillary action, but don't rejoin the blood components returned by the veins. Those blood components not returned form the basis of the lymph system.

The internal jugular vein is the route for blood components to leave the neck. I don't have that any more. Blood components have to randomly move around until they run into a capillary system attached to a vein that works. That leaves a lot of blood components stuck in my neck. Lymph components have no way out. The duct that used to transport them is gone. That leads to a buildup of fluids in my neck that presses on my larynx and produces unsightly swelling. This is temporary. Eventually my body will rebuild ways of dealing with this.

It's getting late and this post is getting long. It's time for me to fess up to what I've lost and what I can expect to recover. And why I had to lose what I lost.

Along with what I lost, the results of testing on the stuff that's gone changed the diagnosis and prognosis completely. I've ended up with a cancer that can't exist, but I had it. I haven't even started with what it killed. It killed pretty much everything it touched.

Oh, CRAP!

Now I have 4 doctors, as a Radiation Oncologist has been added to the mix. At my first meeting with him, I got to see the pathology reports of what actually happened during the surgery on my neck. That type of information should be read on an empty stomach. It doesn't seem like they could have removed that much and actually left anything.

The radiation treatments are bad. The doctor and PA (Physician's Assistant) were professional, but this will give you the general idea of how the meeting went.

Me: I've heard I might need a feeding tube. What's your experience?
PA: You will love your feeding tube.
Me: Uh, I've had a feeding tube and I hated it.
PA: The radiation is going to give you the equivalent of a severe sunburn - inside your throat.
Me: I had 12 biopsies taken out of my throat. I'm familiar with the mother of all sore throats.
PA: That's not much compared to what you're going to get. If your throat gets so sore you can't swallow water, the feeding tube is our only way to keep you alive.

Well, I'm glad I didn't donate that month's worth of feeding tube formula I have left over from the last time. The damage from the radiation is cumulative and gets worse as the treatments progress.

Ny oncologist says I should have 5 weeks of treatments. The radiologist thinks 7 weeks is the right time frame. I will get radiation every day and chemo on Fridays.

The PA says that one to three weeks after the treatments are over is when I will start recovering from the treatments and getting back to "normal". I have to put "normal" in quotes because I have no idea what "normal" is going to be by then.

Me: Am I going to be able to work during any of this?
Doc: You will be able to work as much as and as long as you can tolerate, but by about the fourth week, the only thing you're going to want to do is to plot my death. You're not going to like me.
Me: When I got my feeding tube put in, I was hoping the doctor who did it had a dog, so that I could wish his dog died and he found it dead in his driveway when he got home from work.
Doc: Compared to me, he's going to be your life-long buddy.

I'm planning on missing about 6 weeks of work in June and July. The first week of August is my target date for discovering what "normal" means. That's about when I should be able to start doing something other than surviving.

When the radiologist examined my neck and throat, he had some concerns about the healing. Me too. If I put enough water in my mouth that it takes 3 or 4 swallows to drink it all, it will leak out of one point in my incision. That got the radiologist on the phone with the surgeon, and the surgeon saw me the same afternoon.

The surgeon thought a minor surgery to assist in healing the incision was the way to go. He had me set that up with his surgery scheduler. May 14 was the available date. By May 14, the incision will be healed. I expect the corrective surgery will be canceled and then I'll start the process of scheduling the radiation again.

The first expectation (back in early March) was that the radiation would start 2 weeks after the surgery. It's looking like 2 months is going to be the interval between surgery and radiation.

First Visit With the Oncologist

Instead of scheduling the start of radiation treatments, I'm going back to the surgeon for another followup or two. I need some more healing from the surgery before they start the radiation.

Once the radiation starts, it will be every day for 5 or 6 weeks with a low dose of chemo every Friday. That's probably 2 or 3 weeks away. Patience is not one of my strong points (to put it mildly). I'm getting a bit burned out on how long everything is taking. Actually, it's more than a bit burned out. The only bright spot is that there's nothing growing back where the lump was.

I wasn't ready for the shock of a cancer treatment center waiting room. There were about 30 people waiting for their treatments. Most had someone with them. I will try to have a book to read whenever I go to that waiting room. It's bad enough seeing a husband and wife in their 70's and one of them in a wheel chair. I hope I never see a mother and a child in that waiting room.

I asked if I would lose my ability to taste food and produce saliva. Losing the sensation of taste is probably going to happen. With the radiation centered on my neck, I will probably continue producing saliva, but that's not certain. The doc warned me of a possibility of losing the ability to swallow. If that happens, it's back to a feeding tube.

Huge thanks to so many people

Thank you for your thoughts and your prayers. So much happened so quick and so much changed so quickly that I haven't really had time to digest it or realize exactly what happened.

The entire situation has only taken 9 weeks so far. In that time I've gone from nothing to a diagnosis of Stage 4 cancer to an all clear diagnosis. That's a lot of changes in a short period of time.

At one point I had to consider myself gone from this world as soon as my body figured out it couldn't survive what it was facing. I pretty much accepted that fate, but I was confident I would find a way to survive anything thrown at me. I never had enough time to contemplate not achieving that goal. Waking up in the middle of the night was bad. Waking up was the nightmare. Waking up always reminded me that real life was worse than any nightmare I could ever experience.

When the results of the surgeries were evaluated, the original diagnosis of Stage 4 was proven wrong. The life-threatening risk factors were proven wrong. All evidence at this point in time points toward a 100% recovery with not a single long-term effect or recurrence of this cancer.

I certainly haven't had the time to realize how lucky, fortunate, blessed, or prayed-for that I have been. I always thought I was going to beat it, regardless of how much things were stacked against me.

Getting a pretty much clean bill of health out of it is what I was expecting. It hasn't sunk in yet that I'm one of very few people who gets this kind of a change in their outlook.

I don't want to experience any epiphanies or go on any great crusade now that I have a second chance at living. I just want to enjoy each day and have a greater appreciation and understanding of those who are sharing a day of life with me.

The last post-surgery visit

The surgeon has cleared me for radiation and light chemo treatments. My first visit with the oncologist is April 15, when I will find out about the schedule for post-op treatments. It's taken me about 2 extra weeks after the surgery to get cleared for the treatments. My surgery was St. Patty's day (March 17). It's normally 2 weeks from surgery to radiation, which would have been March 31 (my birthday). With the 2 extra weeks, mine starts on Tax Day (April 15). These are really easy dates to remember. My first surgery was March 13, which was a Friday the 13th.

There is absolutely no regrowth of the lump that was removed. Something caused it to grow rapidly when it first appeared. Whatever caused that rapid growth seems to be gone. I've got some "lumpy" stuff in my neck and throat, but that is normal based on the surgery I had, and will eventually disappear.

I should expect to talk in a hoarse whisper through the entire remaining treatments. I'm supposed to start recovering my normal voice in June. There was nothing found on my vocal cords and nothing done surgically to them. The hoarseness is a result of the feeding tube and another tube that was in my throat during the surgery.

Good News From the Doc

The problem with my throat is healing on its own and will not require additional surgery. It's been a little over 2 weeks since the surgery to remove the lump in my neck. It only took six weeks for that to grow from nothing to the size of an egg. After two weeks there is no indication of any regrowth of the lump.

No regrowth of the lump means two good things. 1) That's an indication that the source of everything was removed, even though it was never confirmed that it was found. 2) The remaining radiation and chemo treatments are mainly a follow-up procedure to make sure that what was already done is all that ever needs to be done.

I got the first group of staples removed today. By my count it was about 20 of them.

Thoughts on a sunny (ahem) Saturday

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.

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.

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.

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.

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.

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.

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.

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.