I'm eating normal food

Well, mostly. I'm down to 600 calories a day from tube feedings and I'm gaining just a bit of weight, so I can start planning to cut that back.

Here's the biggie. For the first time in a year I was able to go to the grocery store and buy food that both Robby and I could eat and plan a week's worth of meals out of things we regularly ate before all this popped up.

This week's menu:
Chicken breasts in mushroom sauce with peas and mashed potatoes with mushroom gravy.
Ham and scalloped potatoes.
Pork chops in mushroom sauce with green and kidney beans and mashed potatoes with mushroom gravy.
A chowder similar to lightly seasoned chili with corn and bacon thrown in.

There is a theme. I bought 5 cans of mushroom soup on my grocery store run. I'm learning to eat using sauces and water to assist in swallowing. The natural reaction is to just swallow sauces and liquids. I'm learning to use them and incorporate them into foods that are difficult to swallow with limited saliva.

I'm getting better at what I call "eating in public". When I started eating again, I had to clear significant amounts of food from my airways. That makes a rather unpleasant sound that's not suitable for eating in public. I had to eat in a room separate from Robby because of the sounds I had to make. I'm getting past that and can eat food as dry as chicken breasts without offending those near me.

My recovery seems painfully slow, but when I look back even as recent as 4 to 6 weeks, the progress is amazing. I don't know if I ever really had a grasp of how much recovery I needed. Maybe that's best.

I'm also starting to taste things a bit better. Some familiar tastes are coming back and it's a pleasure to experience them again. Taste is also a factor of the liquid associated with the food. Saliva normally carries the taste of food to all the taste buds. I'm learning to use liquid with food to both assist in proper swallowing and tasting.

I will end up eating differently than most people. I'm learning that now and making good progress. I never thought I'd have to learn to eat, but that's pretty much what's required. An odd thing is that I don't get hungry. I think my stomach was shrunk long enough that that sensation just went away.

Sometimes it's hard to eat when chewing and swallowing are both challenging, there's little taste to the food, and I have absolutely no hunger. At those times, I just eat because I know I need to do it.

Contact Your State Reps - Pass This

http://www.ksn.com/news/local/story/Bill-proposes-legalizing-medical-marijuana-in/6NECExD14UqKrMZE4IIB5A.cspx

Links don't work right in this blog. You're going to have to copy and paste this one.

I know this is going to be controversial, but this needs to happen. Stoners aren't real productive members of society because they tend to forget what's really going on and spend their stoned time sitting around with not much concept of reality. They are able to ignore reality and enjoy a world where the only thing really significant is whatever happens to be entertaining them at that moment.

Now, think in terms of a cancer patient who is staring death in the face and watching their life crumble around them as the effects of the chemo and radiation destroy their lives as they knew them.

I was one of the fortunate ones who had a really positive long-term diagnosis going into the nastiness of the chemo and radiation. Even with that, there were times when the best thing that could have possibly happened for me was to forget. Even for a moment. Maybe have a laugh or two about something meaningless.

Just give me a chance to forget that I'm fighting for my life and I'm never going to be the same person after that fight is finished. Having to deal with that stuff is just brutal. I would have given anything to be relieved of that for a moment, an hour, a day - anything - just don't make me face that day in and day out for months on end.

The drugs the doctors prescribed for that are some of the most dangerous and addictive drugs in modern medicine. When I was at my worst, I was taking 2 of the 4 drugs Michael Jackson died from - and I wasn't taking the really addictive ones I was getting prescribed. That was just so I could go on from day to day and I had to have the sedatives so that I could stop caring about the damage that the "cure" was doing to me.

I'm not even talking about pain. I'm talking about an unavailable drug (marijuana) that could have let me forget what was going on, could have given me a laugh at something meaningless that isn't even funny, and could have helped me sleep during times when sleep was terrifying, but was my only escape from a truly horrible life.

That would have made my life during the tough months so much better.

Back to the Feeding Tube

I guess the word setback should be familiar by now. At least the time between setbacks is increasing.

I'm back to getting my food out of a can and through a tube until the docs figure out why my digestive system is freaking out. Step 1 is to go back to what was last known to work, which is the feeding tube. The digestive problems began within days of starting to eat solid food.

Everything else is going pretty well. Sleep is still a major issue, and waking up 4 to 6 times a night because of digestive problems doesn't help any.

Eating was progressing nicely. Swallowing was getting more accurate and stronger. I was to the point where I would have eaten salad in public. No meat other than cocktail shrimp on the salad and not much cheese, but I can go that route.

Taste was another matter. At first it was so great just to be able to eat that I ignored what things tasted like. When it comes to repeating foods and trying to figure out a week's worth of food, taste becomes a factor.

Pretty much everything tastes awful and maybe half the things I used to like are just downright nasty tasting. Some are so bad I can't tolerate them in my mouth. I have to have Robby sample my food, because I'm convinced a lot of it is rotten based on my taste. It's not. The big surprise is pasta, which tastes like rancid vegetable oil.

It's pretty tough to enjoy eating when the taste is nasty, chewing everything to a fine pulp is required and tiring to those muscles, and swallowing presents a risk of some unpleasant throat work to clear food out of my air ways. There are some foods I am avoiding because I really like them and don't want to have any memories of how they would taste now. It's too late for shrimp. They lead the way for tasting spoiled. Gotta love the taste of spoiled seafood. Yummy, yummy.

I'm reminded of the description of a smell I was producing at the worst of the chemo and radiation. Stuff was dying all over inside me and there was something I was producing that I described as smelling like two skunks fighting over a dead fish.

Refried Beans and Fried Eggs

Well, that's the best things on my diet right now.

I can swallow stuff, but what I can realistically eat is pretty limited. Meat is really tough. Wienies just barely make it. Burger works if there's lots of gravy or other sauce. Pork chops cooked in the top of a crock pot (really tender and moist) work - barely.

Then it gets into taste. Fortunately, I've never been picky on taste. Swallowing is hard work for me, and it seems even harder for things that taste bad. I was hoping that my brand new taste buds would give me great taste, but that's not the way it's working. Right now, fried eggs are the best tasting thing I eat. I pretty much can't taste sweet, and that really messes things up. Here's a bit of a rundown on things I've tried and what I've found from a taste aspect:

Bananas - Disgusting. Knock out the sweet part and they're nasty, but I eat them.
Chocolate - Disappointing. I have to enjoy the bitter aspects.
Shrimp - Great. Plus, my mouth rinse brings out the flavor for extended time.
Budweiser - Tastes like a good import with not great hops.
Tea - The bitter flavors are great and very pronounced.
Coffee - Very strong flavor. Good for enjoying the bitter.
Wienies - Way too spicy. They almost burn my mouth.
Salsa - Yikes! Pace medium is hot, hot, hot! I miss hot sauces.
Berries - Almost inedible. take out the sweet and they're nasty.
Rice - Bland. Just like rice tastes normally.
Long grain and wild rice - Tastes exactly like I would expect dirt to taste.
Cashews - Unbelievable. I can taste the nut butter (like peanut butter) and salt tastes and They're awesome together.
Yogurt - Unpleasant. The worst parts of the "yogurt" taste are turned up to the max and the sweet and fruits added don't have a good taste, but yogurt is still a major part of my diet.
Pork chops - Almost tasteless.
Grilled hamburger - Almost tasteless.
Sausage gravy - Intensely spicy, but tasty.

Most food is unpleasant to taste. That's an improvement over August when I was eating before the pneumonia. Back then I had two taste sensations: 1) Nothing and 2) My mouth is on fire.

I can eat a max of maybe 12 ounces at a time. That will generally require about 16 ounces of water to get everything swallowed. My swallowing mechanism gets tired during that much. Once that happens, I may as well quit trying to eat because I'm swallowing too weakly to get anything down.

Fortunately, my swallowing mechanism gets tired about the wsame time as my stomach gets filled. I'm eating more smaller meals than I used to.

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.