Nasopharyngeal What?

Dilation Procedure XV a Success!

2011-01-06T16:05:00.002-05:00

I had dilation procedure XV today and it was a success. They were able to increase the opening of my esophagus from 18MM to 20MM. For those of you who remember thier basic geometry (That whole Pi R Squared thing) It is about a 23% increase in the opening size. Big time yipeee! for that.

Dilation Procedure XV

2011-01-01T20:06:00.003-05:00

Who knew I would actually use Roman numerals as much as I have been. This week is dilation procedure XV. I want to increase the frequency of the procedures. It seems that I made greater progress when there was less time between the them. It has nothing at all to do with the blanket warmer and heated gowns they have at the hospital, honest!

As always negative is good with MRIs

2010-12-07T05:22:00.001-05:00

Just a quick update. A few weeks ago I had another MRI. Depending upon whose calendar you use this was either my 3 year anniversary of ending treatment or the 2 and a half year mark. 3 years for radiation treatment and 2 and a half for chemo. Either way the results came back negative and as you probably know by now when it comes to cancer negative is good. Big time yippee for that.

Dilation Procedure XIV... More of the same

2010-11-19T07:51:00.003-05:00

Yesterday I had dilation procedure XIV. This procedure got me back to 18mm, just in time for the holidays! It had been about 5 months since the last one and I should have scheduled it earlier but after having so much fun with the PEG tube removal I decided to wait a bit this time. The next one is scheduled in about 2 months.

Oil Well Follow Up

The PEG tube removal healed without a hitch. Now you would barely know that anything was there. It's just a small scar that for the most part isn't noticeable. I also learned a new term. Fistula Repair. This is the surgery they do to essentially remove the indentation that comes with the PEG tube.

Drilling a Relief Well

2010-07-23T08:25:00.002-04:00

I had the relief well done last Tuesday. This method involves traditional surgery with a local anesthetic. (Talk about a strange feeling, having someone poke around in your stomach while you are lying on an operating table. No pain during the procedure but you can feel the tugging. I definitely prefer sedation with the amnesia effect. Of course I would prefer that for lots of things....:-)) In this case the surgeon removes the tissue around the PEG tube hole including the hole itself and separates the stomach from the wall of skin. (With a PEG tube those bind together permanently.) He then sews up the stomach, muscle and skin separately. No more second belly button and all of the interesting piercing opportunities for me. Instead I get a 3/4 inch horizontal scar.

All in it took only 45 minutes but was probably the most stressful part of this whole thing. For some reason this bothered me more than anything else I have gone through. I was clutching the side of the operating table so hard during the procedure that my forearms hurt afterward. Nothing in all of this, CT Scans, biopsies or anything got to me as much as this did for some reason. It still gives me the heebie geebies (note my deft use of technical medical terms.) to think about it. On the plus side this is pretty much a guarantee fix. I need to take it easy for a few days but by the end of this weekend the soreness should be gone and I can pretty much do anything but strenuous ab exercises. (My new excuse for not having 6 pack abs, the doctor won't let me.) After about 3-4 weeks I can do whatever I want.

The normal time line for this type of process is to take at least 4 weeks to see if the hole will close by itself. Then another 3 to 4 weeks with the silver nitrate and then the surgery. I accelerated it a bit and jumped to the surgery after 4 and a half weeks. From what I have read when you have a tube as long as I had and it doesn't close up quickly it probably isn't going to and you end up going the surgery route. As much fun as the silver nitrate sticks were I couldn't see doing that another 2 times. It appears to be healing over nicely however I am going to wait until 3 full days have gone by until I start testing it out with "normal" foods.

What I have in common with BP

2010-07-17T06:50:00.003-04:00

I officially left the Borg collective 3 weeks ago. It was a simple outpatient procedure done in the GI docs office to take the PEG tube out. Big time yippee! for that. Normally the hole for the PEG tube closes all by itself in 2-3 days and completely heals over in about 2 weeks essentially leaving you with a second belly button and some interesting body piercing options. However in keeping with my goal of trying to experience all aspects of this my hole decided to not completely close up. Here is where the resemblance to BP's oil spill in the Gulf of Mexico starts. Keep in mind that this is smaller than a pin hole and while it does leak it isn't gushing or anything.

The automatic closing method is something like the blowout preventer. It's just supposed to work. During that time I am supposed to eat small meals to help minimize anything leaking out. Unfortunately I tend to need to drink a lot of water to eat so it makes it a bit more challenging. To help I started drinking Ensure again to keep the calorie count up. They like to give it a few weeks to close over before going to plan B, what I call the top kill method. Plan B involves chemical cauterization. Basically they use silver nitrate to try to "encourage" the hole to close. The silver nitrate stick looks like a long match stick, sort of like what you would use to light a fireplace. They take the stick and wiggle it around in the hole. The silver nitrate on the stick reacts with any moister present and converts to acid that burns away some of the tissue. These exposes "fresh" tissue to try to heal over the hole. It's a simple procedure but it does temporarily hurt quite a bit.

Unfortunately the top kill method didn't work either. The normal course of action in this situation is to try the silver nitrate approach a few times with a week between attempts before moving on the plan C. From what I have read it appears that if it doesn't work the first time it most likely isn't going to work. I am on a bit of a crunch for time in getting this resolved so we are moving to the the next step this upcoming week.

Plan C, drill a relief well. The third, and hopefully last step, in the process is a minor outpatient surgery procedure. (Fortunately they do use a local anesthesia for this one!) Here they clean out the hole so it will heal over and seal it with a stitch. Depending upon how deep they have to go I will be sore for a few days to a week. However supposedly because they have closed it with a stitch I can go back to eating they way I used to. One downside is that I tend to drink a lot of water when eating and can cough quite a bit at times. This causes obvious problems with the "well" so I have throttled back my eating and rely on Ensure for most of my calories though I do occasional go off the wagon like last night at Buffalo Wild Wings and had a pulled pork slider. (Yep, I do live life on the wild side, pun intended.) Because of the altered diet I have dropped about 10 pounds in 3 weeks. While a very effective weight loss program it wasn't something I was looking to do.

So to recap. Here is how things went.

Phase 1: Blowout Preventer Phase

Remove tube, hole should close automatically in 2-3 days and be completed healed within 2 weeks.

Phase 2: Top Kill Method

After 3 weeks perform chemical cauterization with silver nitrate sticks. Should seal up in 1-2 days.

Phase 3: Relief Well

Clean out hole in outpatient surgery procedure and seal with a stitch. Recovery time 3-7 days.

Operation Garbage Plate Update

2010-06-18T12:07:00.002-04:00

For those of you that don't know Operation Garbage Plate is my swallowing recovery program. Last week I had dilation procedure XIII. Unfortunately that one didn’t move things any farther forward but that has happened in the past. The next one is will be in 3 months. As the saying goes “lather, rinse repeat”.

As far as Operation Garbage Plate goes there has been some success from the prior procedure. I think that there is probably at least one item on most menus that I could eat somewhat normally now and depending upon the restaurant there would be several. For example I am now able to eat the delicacy that is known as the McDonald's Double Cheeseburger. And I am comfortable enough to do it in public without fear of someone calling 911 from the antics I sometimes to go through to swallow. Now if break dancing were to make comeback….

I also think I could eat a Garbage Plate now though I won’t get a chance to try until the end of August. For those of you that are not familiar with the the delicacy that is the Garbage Plate here is a video that describes it in all its brilliance. Truly a culinary master piece.

There was one way cool thing about the last procedure. The hospital has upgraded the gowns they use and they now have these places to attach air hoses that you can use to provide warm air. No more blanket warmer for me! The link to the vendor site is : view link This was nifty surprise and made it worth the trip. They also provide you with these matching socks with rubber pads on the feet to make sure you don’t slip. Of course I asked if I could keep the socks as a souvenir. They also gave me pictures of my esophagus as they did the procedure. We are talking a full service operation here in tiny town. Heated gowns, free trip photos and souvenirs to boot. Pun intended. :-) (Yep, don't quit that day job.)

Time to leave the collective

The real update is that today I am going to leave the Borg collective. After about 2 and half years they are going to take the PEG tube out this afternoon. My last MRI came back negative and as we all know negative is good! Big time Yippee! for that. Now I am in the less than 8 % recursion group and haven’t used the thing in well over a year so they are letting me get it yanked. I offered to bring a pry bar to help but they declined. Go figure! Something about lawyers, malpractice and sanitation…

Up to now the primary reason for not removing the tube was they would have problem putting one back in if I needed it. That still holds true today but as my oncologist said if I needed to have it put in again I would have bigger things to worry about. They can still put one in its just via a different method.

Oh... and by the way it's only a rumor that I asked about getting the tube back to use as a modified beer tap. There is no way beer would flow out of it fast enough. Now to pour the hard stuff... that has possibilities.

Dilation Procedure XII as Success

2010-02-07T06:47:00.002-05:00

Last week I underwent dilation procedure XII and it was a success proving good things do come to those that wait. I had some scheduling issues and a nasty cold that caused delays but in the end it worked out OK. This time they were able to open my esophagus to 18mm. Definitely forward progress and as soon as the mother of all sore throats goes away I plan to take it for a test drive.

I did learn something new this time around. When I went in for the pre procedure checkup I mentioned to the doctor that I would occasionally try to push the size of what I could eat to see if I could help stretch the opening myself. Apparently this is a big time no-no. Swallowing applies downward pressure and with the dilation procedures they use the balloon type things that push outward applying radial pressure. Trying to swallow larger things than I should especially near my wind pipe is not recommend and can cause some problems. I guess this is what they mean when they say you shouldn't try this at home. :-)

Operation Garbage Plate Update

As part of my experimentation I have tried to venture out to two chain restaurants. Neither went very well and ended up with my not eating much as all. For some reason it seems that the food at a lot of these chains do not favor the swallowing impaired. (Who knew that we are not part of the target demographic?) Most of the choices seemed to be multiple variations on a few key components, none of which I can eat easily or want to out in public. The super sizing of portions doesn't really help matters much. One area I seem to do OK in is Italian. Just about anything with Alfredo sauce and enough time works out OK. One thing that this has shown me is what I can eat when at home and preparing it myself vs eating out is two different things. I have become very good at adapting things for my situation at home that I had forgotten what food out in the "real world" is like.

I did ask about getting my PEG tube removed this time around. we decided not to take it out at this point even though I haven't had to use it in quite some time. Apparently the limit to the amount my esophagus opens up would make it very difficult to put a new one in if they had to. Seeing as it isn't causing me any problems at the moment it was decided to leave it in just in case something went wrong with a procedure and I had to use it.

Another Cancellation and Captain Crunch To The Rescue

2009-11-12T03:52:00.004-05:00

Dilation procedure number XII was scheduled for today but due to a nasty head cold it had to be cancelled. Something about wanting me to be able to breath while under sedation. Picky people.

Aside from the normal downsides to having a head cold not being able to swallow properly adds another dimension to the problem. There aren't many things that I can just wolf down without a severe debris issue. I decided that maybe it was time to revisit some foods I tried back at the beginning and to see if they would work better now. Enter Captain Crunch cereal. This actually works reasonably well as long as I take small spoonfuls. The nice thing about this cereal is that is crunches into nothingness in your mouth quickly. As long as I take the time to chew it properly it doesn't have that much of a debris factor. I can't eat it as fast as I would like but it is something I don't have to spend anytime making. This opens up a whole new area of opportunities for eating in the morning. My normal routine is to take about 15-20 minutes making something that I then take 20-30 minutes to eat. As you can imagine with a head cold that gets to be a drag. Now I can browse the kids cereal section at the grocery store and hopefully have a wide variety of options. Next up Crunchberries! BTW in case anyone didn't know they aren't real berries. Check out this story. Apparently Froot loops don't contain any real Froot either. Go figure.

Field Trip Cancelled

2009-11-03T17:10:00.003-05:00

Unfortunately this weeks field trip to The Roswell Park Cancer Institute was cancelled at the last minute. I arranged to have my last swallowing evaluation faxed over and called today to make sure it had arrived. They called back to let me know that the doctor I normally see was no longer there and I would have to reschedule with another doctor sometime in December or January so no road trip tomorrow. :-(

18 Month Update

2009-10-15T13:16:00.008-04:00

Last week I had my 18 month CT Scan. It came back negative and as always in this case negative is good! Big time yippee! for that. I won't have another CT Scan until the 2 year anniversary. That is the next big milestone.

Operation Garbage Plate Update

I go in for Dilation Procedure XII in a few weeks. Hopefully we can start moving forward again. I did learn an interesting item about the esophagus and dilation procedures. Apparently the section that I am having dilated is more fragile than other parts of the esophagus. This could explain the caution that they are taking with the procedures.

I have been able to expand the items that I can eat at home. I am revisiting some of the early skirmishes of Operation Garbage Plate. There are items that I tried at the beginning of the year that I am retrying now. One item I tried awhile ago was a Wendy's Jr. Bacon Cheeseburger. This is arguably the best value priced hamburger on the market. So feeling particularly adventurous one day I decided to give one a try. Amazingly enough I could sort of kinda eat one. (Sorta kinda meaning 20-30 minutes, lots of water and some coughing. :-)) Finally, calories the old fashioned way via fast food. Unfortunately the nearest Wendy's is 20 minutes away so it isn't really convenient. Not wanting to ignore the siren call of the Jr. Bacon Cheeseburger I took a page out of Sponge bob and decided to duplicate the Krabby Patty, I mean Jr. Bacon Cheeseburger, formula. (Bonus points to any adult that knows who Mr. Krab's nemesis is.)

Next time I was in the vicinity of Wendy's I picked up another one of these culinary masterpieces and took it home to dissect it and see what the secret formula is. Note to all you hamburger right activists out there the burger in question was reassembled and eaten as intended so no hate mail please! What I discovered changed the way I assess food to see if I can eat them. The problem I have had in the past with burgers has been twofold. First is the size. It seems that for the most part the standard size is a quarter pound burger with the third pounder rapidly gaining on it. Those have been out just because of the size and in particular the size of the bun. I have tried a regular McDonald's cheeseburger but the problem with that was no matter how small of a bite I took it would reassemble into a plug in and as the saying goes "What goes down must come up..." You can imagine the rest.

The Wendy's Jr. Bacon Cheeseburger didn't have that problem. There is the whole debris thing but I expected that with the bacon, lettuce and tomato components. I normal try to avoid that stuff. Instead what I found is that those components were what kept the Jr. Bacon Cheeseburger from reassembling as a plug. It is just enough that when chewed properly I can swallow in small amounts without plugging my esophagus. The other thing I found is that Wendy uses a 2 ounce thin square patty, thin sliced bacon that is cooked soft, ketchup on the bottom and mayo on the top along with the bacon, lettuce and tomato. This combo works for me and also tastes pretty good. One thing I can say about Wendy is that gal knows her way around a grill!

Now that I have unlocked the secrets of Wendy (Jr. Bacon Cheeseburger that is) I have been able to duplicate it at home. I add a bit more mayo, sometimes I skip the lettuce, the tomato seems to be the key component here, but otherwise I keep true to the original burger masterpiece. My home version comes out pretty good and is actually easier to eat. I have more mayo on it and as is the case with bacon everything tastes better with mayo. The only downside is the prep time but what I have done is create my own patties (I can't seem to be able to buy anything smaller than quarter pound patties) and freeze them. I cook the bacon up in advance and store it in the refrigerator. This way I can put it all together and eat it in about 30 minutes. That is around 400 calories in a half hour and that is ahead of my minimum of 600 per hour.

Whats Up Next

I have another dilation procedure coming up in the next few weeks. I am also off to Roswell Park in the beginning of November. While pursuing the dilation procedures I also want to see what can be done about some other problems with swallowing. One of the problems is what I call the debris issue. I think this is related to the epiglottis not moving the way it should when I swallow. Hopefully they will have some ideas to help move this along. The debris issue is rapidly becoming more important and rather than wait until I am done with the dialation procedures I thought I would pursue that issue at the same time.

Operation Garbage Plate Update

2009-08-22T20:07:00.002-04:00

Last Thursday was dilation procedure XI. Unfortunately this one didn’t move me any farther past 16.5 MM. However there has been an exciting new discovery in my quest to swallow. Up to now snacking was pretty much limited to a select group of cookies with lots of water. The plus of this was they were and are one of my go to portable temperature stable foods. The downside is that sometimes when you are just hanging out watching TV you would like to have a more typical snack food… say popcorn. Currently popcorn is not one of those things that I can really eat. Every so often I will attempt a few kernels but it never ends up well. Not well in this case means cough fits followed by random particles coming out my nose the next hour. Once again not quite as popular as you would think in a group setting.

Now enter into the picture Chesters’s Puffcorn, butter flavor of course. These are butter popcorn flavored and shaped puffs that have a similar texture to cheese puffs. I was at someone’s house the other night and these were there so I thought what the heck and tried one. Sure enough taken one at a time I can actually eat these. They dissolve in your mouth. They have a butter popcorn taste without the swallowing downside of real popcorn. That Chester guy really knows what he is doing. They are not all that great in the calorie department but they are still a plus.

Another recent discovery is the Starkist lunch packs. These are packages designed to be a lunch kit. They come with a small can of tuna, package of mayo, package of relish, some crackers and a spoon to mix it with. You just open up the can, add in the mayo and relish and mix it up. Then put it on the crackers. My initial intent was to just eat the tuna, that I can sort of kind of do. Instead being the daredevil that I am I gave the crackers a try. They had just the right stale texture that kept them from reforming to a plug in my mouth when eaten along with the tuna. I was able to eat the entire package. By package I mean the food items, not the spoon and container. Admittedly it took about a half hour and fell below my normal per hour calorie goal but it still broadens the list of portable food items that I can eat. Way to go food engineers with the specially formatted long shelf life semi stale crackers. Hmmm… I wonder if they could use that in an ad . (Note to self: Contact Starkist with new ad campaign idea.)

Procedure X A Success!

2009-06-11T17:28:00.003-04:00

Today's dilation procedure kept to the idea that important anniversaries, predictions for cataclysmic events and good things happen in numbers easily divisible by 10. After being stalled at 15 mm for the last 8 months or so things moved forward today and they were able to dilate the esophagus to 16.5 mm. (A 21% improvement in volume) The ultimate goal is of course to get to somewhere greater than 20 but if the next few are successful I may be able to get there by fall.

I also had my PEG tube replaced today. They still won't let me get rid of it and the balloon burst on the one I had. Now I have a for real mic-key button tube. My model had been discontinued.

Now I am plotting what to try my new found capability on.

Hot Dog Therapy: Operation Garbage Plate Update

2009-06-04T13:05:00.003-04:00

Last week I met with the radiation oncologist. Once again the scope came out and once again up the nose it went. (No matter how many of those I have done I will never get used to them.) He confirmed that at this point the cancer is still gone. Big time yippee! on that. We also discussed the swallowing disorder a bit.

He got a copy of the speech therapist report on the swallowing evaluation and a new term was introduced. Pharyngeal Dilation. Along with the esophagus there is also an area above it that is constricted. Thus pharyngeal dilation. I haven't done much research on this but it is next up on my question to the ENT doc.

Hot Dog Therapy

When I first started on operation garbage plate I was focused primarily on the esophagus opening. Initially just drinking water in any amount was a challenge if not impossible. One thing I would try to do is drink a bit more than I can handle (water that is not adult beverages!) and see if I could force it down with a hard swallow. I could feel some discomfort / slight pain when I did this but in the end it really didn't help make swallowing any easier. Every now and then I would give it another try without any results.

After the swallowing evaluation I started to wonder what I could do to move the epiglottis. Then it hit me, maybe that was what I was feeling when I tried the hard swallowing with the water. When I have the next swallowing evaluation done I am going to try doing a hard swallow to see if the epiglottis moving is what is causing the pain / discomfort. It could be that is the strictures formed during treatment being stretched out. In some ways it reminds be of the jaw stretching exercises I did at the beginning to increase the amount my mouth could open.

This is where hot dog therapy comes in. Hot dogs are essentially pureed meat. (I use the term "meat" lightly. :-)) I have been able to eat hot dogs without buns in small bites but never in a way that resembled normal. One of the problem is that I prefer the white hot ones with natural casings. those casings cause some serious debris problems. So decided to switch to the skinless dogs. The idea is to chew them up a bunch and then take a large sip of water and try to force it down. This gives enough volume to that I can feel it but being pureed meat it lessened the chance of getting stuck. Achieving the effect of feeling the pressure is hit or miss but generally I can do it a few times per hot dog. Of course not being content with just that result I decided to add in another twist of two. The first was using a bun. What I have found is that if I use a New England style hot dog bun lightly toasted on both sides it reduces the problem I normally have with bread in getting stuck and increases the likelihood that I will feel the pressure from swallowing. The second addition was hot dog chili. This delicacy comes in a can and is mostly pureed beans with some onion. Yes... I know canned chili but for a hot dog this is about right and it is the same as you would get from a street vendor. The addition of the chili also helped mitigate the potential for the bread from the bun getting stuck.

The plan is to try to have at least one hot dog a day in this manner for the next month or so. The goal is to see if this is helping to stretch the epiglottis and / or the area above the esophagus. So far after 1 week I seem to be able to eat a hot dog easier than I could before starting this. Many thanks to the 12 brave hot dogs that made the ultimate sacrifice this past week for operation garbage plate. :-)

I know... it may seem like a horrible chore having to eat a chili dog a day. It's a burden that I am willing to take on, anything for science. :-)

Next week I am back in for dilation procedure X.

Swallowing: A Rube Goldberg Invention

2009-05-11T11:17:00.000-04:00

I had a barium swallow test done last week. This is the second one I have had done and going forward the plan is to do them every two months to monitor the progress of the dilation procedures. One thing that this test along with my other research into swallowing has shown is that swallowing is way more complex than I ever realized. Aside from the whole chewing, swallowing, tongue movement and esophagus stuff there is also coordination between the throat muscles and one other minor thing, the epiglottis.

That last thing is one of the sources of my debris problems. BTW that now has a more formal name, nasal regurgitation. Personally I think they could have come up with a much better technical term for it, maybe something in Latin. Nasal regurgitation sounds like the punch line from a stand up comedian. Anyway I guess the way its supposed to work is that when you swallow the epiglottis moves down to cover the trachea and stays horizontal or even pointing a bit downward so whatever you are consuming doesn’t go down the windpipe and moves along on its merry way. What the test revealed is that the epiglottis (try saying that 10 times fast) just isn’t moving, instead it creates a pocket to gather some of the food stuff in there. When I cough it dislodges the particles but sends some up to my nose. My guess is that depending upon what I eat and how, i.e. with or without water or other lubricants (mayo for example) , determines how long things get stuck there and how much of a debris factor there is. This could explain why some things seem to be OK and others require a significant amount of coughing to dislodge.

At this point they really haven’t provided much info on how to change the way the epiglottis is behaving. From what I have been able to research there aren’t any muscle groups involved, it is just supposed to flop over when you swallow. Most likely strictures have formed from the radiation treatment so the question will be what, if any, means there are to deal with the strictures. Later this month I meet with the radiation doc and will see if he has any ideas. After that I will most likely get in touch with the ENT doctor to see what they suggest.

Dilation Procedure IX Update

2009-05-05T16:53:00.002-04:00

I had dilation procure number nine last week. Once again it got me back to 15 mm. It appears to be easier and easier to get me to 15 but difficult to move beyond that point. The thinking now it to try to keep on a regular schedule of procedures to see if we can move beyond 15 mm. The next one is should be scheduled 4 weeks from now.

The Carnival Was Back In Town In April

2009-05-05T16:29:00.002-04:00

It's been awhile since I posted an update on my swallowing recovery A.K.A Operation Garbage Plate. It's been two months between dialation procedures. Some scheduling issues and a nasty cold got in the way. (Something about wimpy anesthesiologists wanting me to be able to breath during the procedures. Sheesh, picky, picky picky.)

So for the month of March I was pretty much off the leash as far as doctors visits and such go. April on the other hand made up for it. I had another round of CT Scans to start off the month. All negative and as we all know negative is good. (Big time yippee!) It has been a year since treatment ended so the CT scan schedule is going to be every 6 months now. (Once again another yippee for that.) I also met with the oncologist for the 3 month check up. Nothing new there but it was a nice day to be out and about. Then a trip to the dentist. This did turn up a cracked tooth so its off to cap land for me. It doesn’t appear to be related to the cancer but the cancer makes it a bit more delicate to treat so I will be going to a specialist. I did check with the specialist at the Roswell Park Cancer Institute, more on that later, and they did not feel that the crack was cancer related. The dentist did speculate that it may have been due to the rather large cavity I had in that tooth from my sugar laden misspent youth. (No comments from you traildoc. It was the 70's and everyone was expirementing with candy bars in a big way. :-))

Fortunately after the dentist visit I was also scheduled to go to the Roswell Park Cancer Institute. I think I have mentioned this before but I will mention it again. If you have the opportunity to go to one of the major cancer centers that treat your type of cancer you really should. They may just reconfirm everything that you have all ready been told but it is still a worthwhile visit. In my case this is my third trip there. The first was just to confirm the diagnosis even though I had already started treatment. The second time was after treatment ended but before I started dilation procedures and the third time was today. All of the visits were worth it but today was probably the most beneficial. First I got a recommendation from them for a local dentist that they have worked with on head neck and throat cancer patients. If that schedule doesn’t work out or I am not comfortable with that dentist they can handle the crown there. They do them all the time and there are some special considerations for cancer patients. It’s not my first choice to drive 2.5 hours for a few visits for this but it’s nice to know the option exists.

The other benefit was the specialists they were able to bring in on the swallowing front. I should note we did go over the latest tests and once again they used that darn scope thing up my nose. (Someday I have to ask them to let me try it out on them so I can see what the attraction is. I swear every doctor I see that has one, and that is 3, love to use it on me every chance they get. :-). Back to my point. Because all of the specialists are housed in the same area at Roswell it has never been a problem for them to just grab a colleague that specializes in a specific area to chat and review the plan. In this case they brought in a nutritionist that introduced me to the mechanical soft diet. First the just referred to it as mechanical soft and some very odd thoughts went through my head. Then I figured out it was an eating plan for the swallowing challenged. :-) I really wish I knew about this 8 months ago. For anyone with swallowing issues do a goggle search using that phrase and you will come up with lots of good information. The nutritionist also took the time to explain in some detail about different oils, calories and cholesterol. I always knew that different oils had different properties but I have to admit that whole transfat, mono, poly or whatever thing did mystify me a bit in the past. I always felt a bit like the good witch in the Wizard of Oz. Are you a good oil or bad oil? Anyway it was great to get to spend some time with her and just rattle off some of the things I have been eating and get some ideas where they fell in the spectrum of things and look for alternatives.

The real find though was the Speech-Language Pathologist. This person just specializes in swallowing recovery for head neck and throat cancer patients. I brought up the reports from the GI doc doing the dilations and he was able to confirm that we are on the right track but added quite a bit of insight into the process and some great suggestions. One of the things that were recommended was doing the barium tests every two procedures to see how things are progressing and what swallowing techniques can be done to avoid the whole debris issue. For those not in the know that is my uncanny ability to sneeze just about any food out my nose, even when I don’t want to. A nifty party trick but you really need to have the right audience to pull if off. I have only had one barium test performed and that was before any dilation procedures. Getting that scheduled was my first call the next day. Another suggestion he made was on the technique of small bites and small sips of water. Apparently my macho drink as little water as possible approach when eating may have not been one of my better ideas. He didn’t suggest going back to drinking my food but just to have a bit more water when eating. Of course with that misstep there goes my centerfold shot in “Swallowing Monthly” Oh well…

I think the point I really wanted to make was getting second or third opinions about treatment and recovery options is a good idea if you can do it. It may seem redundant but it is worth the effort if for no other reason than to verify that the course you are on is the correct one. When I first went to Roswell Park it was after I started treatment. Some people did wonder why I was putting myself through that at the same time I was perfecting my precision vomiting techniques. Especially when all they did the first visit was confirm the diagnosis and treatment plan. For me it was the peace of mind knowing that I had multiple people concur on the treatment plan. The added benefit is that on the recovery side they have much more experience and are able to offer some good advice and they work well with my local docs.

So April has been a bit busy, nothing like the circus that was treatment, but still lots going on after having March off. Gotta go. There's no line at the ring toss.

From Vegetarian to Atkins

2009-02-24T07:39:00.003-05:00

Dilation procedure VIII went as expected it got me back to 15 MM. Right now I am just hovering at that level. The next procedure is in 4-6 weeks and after that I am going to ask to go back on the 2 - 3 week schedule. I seemed to make forward progress when there was less time between procedures.

One interesting thing is that my efforts to try to swallow with less water have really started to have an impact. Aside from the downstream benefits of drinking less water I also am also able to eat more items than I have been in the past. There were items that should have been small enough swallow but presented a problem. I have just started to be able to eat home cooked hamburgers with cheese, bacon and lots of mayo with some problems but I can get it down. Lately I have been having those for lunch and dinner just to get the practice. (O.K... also for the taste. Lets face it everything tastes better with bacon!) I am hopeful that burgers follow the same track that omelettes followed. With omelettes it was a major issue just to be able to eat one in an hour. Then I got it down to half an hour and now I can eat one in about 20 minutes without much to drink. That isn't back to where I was at but it is far better than where I was.

This does get into one of the things I feel is lacking (out of the many things I feel are lacking) in the Cancer industry. There really aren't many "how-to" guides out there, in particular for us head neck and throat cancer folk. Swallowing is an example of this. As I have found out there are a lot of aspects to swallowing. I was focused initially on just dry mouth and the esophagus opening. Just as important is technique. Strengthening the muscles in my throat and even posture I have found are very important. This is where a how-to guide would have really helped. Another guide that could be written is "Projectile Vomiting: Time Tested Techniques For Hitting The Bucket.". That one would have been very useful. My point is that I think most people that get cancer are newbies and learn by trial and error. Simple things like when should you call the doctor to talk about things like pain meds (I was way behind the curve on that one) or nausea would have been nice to have.

What's Happening This Week

2009-02-10T11:37:00.002-05:00

I have two appointments this week. The first is with the radiation oncologist for my 9 month checkup with him. The second is dilation procedure VIII. So far that looks to be a go! One thing I plan to ask the radiation oncologist about is my voice. So far my voice has not recovered as much as I would have liked and I need to see what the next steps are. Most of my focus up to this point has been on swallowing but I will need to start to focus on my voice as well.

Mission Rescheduled Due To Weather

2009-02-05T17:53:00.002-05:00

The cold that is, or more appropriately put my cold. Today's dilation procedure was rescheduled to next week because of a cold I can't seem to shake. I called yesterday to let them know and of course the procedure was rescheduled. Something about wanting me to be able to breath properly while they have me under. :-).

Frozen Food That Isn't Ice Cream

2009-02-01T22:31:00.002-05:00

I discovered another food option yesterday. Every now and then I will wander the food aisles of stores to see if I can get any new ideas for things to eat. Yesterday while I was at Target I checked out the frozen food section there. Normally frozen food entrees don't work out all that well. The food tends to get a bit rubbery and that makes it difficult for me to eat. However I did rediscover an old favorite, Stoufer's frozen mac and cheese. I have had mixed success with Stoufer's products and hadn't really given them a second look lately. It turns out the mac and cheese was gooey enough to eat reasonable well. As always the debris factor was there but for the taste and the calories it was worth it. The box I got said it was 2.5 servings. I am not sure how they calculate the numbers but I had the equivalent of 2 servings for dinner and finished up the rest later that night. All in it was around 800 calories. Not too bad at all.

Preperation Is Everything

2009-01-28T16:01:00.006-05:00

While waiting for the next dilation procedure I have continued with my food experimentation. One thing I have found is that how the food is prepared is as important as what the food is. Meatloaf is a good example. A while back I did try one of the pre packaged frozen meatloaf dinners. Needless to say it was not overly successful. There is something about ground beef that causes it to be a problem in almost any form. Bulk sausage also suffers from the same problems except when it is made into something like sausage gravy. Even then there are problems but not as bad as ground beef. Besides properly made sausage gravy and biscuits tastes good enough to put up with the problems eating it.

After trying packaged frozen meatloaf without success I was ready to write it off. I decided to give meatloaf another try but this time make it myself. I used a mix of ground beef, pork and veal as the base meat and a recipe from AllRecipes.com with some minor substitutions. (Let's be real, who has panko bread crumbs just lying around the pantry?) Turns out the meatloaf was a success, or as much of a success as eating can be for now. This particular recipe used ketchup as one of the liquid ingredients and as the glaze. Next time I think I will substitute some Dinosaur BBQ sauce instead to add a bit more zing. (Yep... once again all that late night TV is paying off by expanding my culinary vocabulary.) The other nice thing about meatloaf is that it keeps reasonable well and reheats easily without that much degradation in quality. This is important because one of the problems I have is that most things I can eat require advance preparation and don't lend themselves to just heating up in the microwave. As much as I like to cook there are times when you just want to heat something up to eat.

Two other home made items that I can eat reasonable well and can be made in advance are potato salad and baked beans. Baked beans work out well because of the nutrition in the beans. I can eat some canned beans but I prefer the home made ones and there are some significant cost savings there. These I just make using the standard Boston Baked beans recipe from "The Joy of Cooking". Potato salad also works out well. Both of these items keep well and can be ready to eat quickly. The only real modification I make to potato salad is to drop celery from the recipe. Celery, a.k.a. The Stalk of Death, is a problem to eat on many levels at this point of time and I avoid it like the plague. When I really want to live life large I will have a Hoffman's Coney (White hot to some folk) without the bun, baked beans and potato salad. The coney is essentially pureed meat and the Hoffman's brand is the one that I can eat without too many problems.

Once Again Negative Is Good!

2009-01-15T14:20:00.002-05:00

I had my 9 month check up at the medical oncologist office today. The CT Scans I had earlier in the week came back negative and as always negative is good! The next follow up appointment and CT Scans are scheduled for April.

Happy New Year!

2009-01-12T19:06:00.003-05:00

It's a new year and now that the holidays are over I start back into Operation Garbage Plate. This week I have some tests scheduled including a CT Scan to see how things are going. I also meet with the medical oncologist for my 9 month checkup. After that its back to the dilation procedures. Due to scheduling conflicts (Who knew that doctors took vacations?) the next procedure isn't until February 5th.

Operation Garbage Plate Update

Currently I am not using the PEG tube for any of my feedings. Big time Yippee! for that. Unfortunately they won't let me get the thing taken out until a few months after I have completed the dilation procedures. This is just in case something goes wrong with a procedure and I have to start using the thing again.

On the food front I have been experimenting with different types of food items and broadening what I can and can not eat. At this point I still need to prepare and eat everything at home. I did try to eat a McDonald's fish fillet on the way home from a hockey game last week and lets just say it wasn't something I would want to do in public. :-) To go to the game I had to be away from the house for 5-6 hours and that is a stretch for me so the option was to try something out or bring a can of Ensure. I decided to live life on the edge and try a Fillet of Fish sandwich with extra tarter sauce. All in I could eat it the sandwich though it did take about 45 minutes and involved lots of coughing along with the usual debris issues.

One thing I did find out is that I am able to eat french fries that are larger cuts like steak fries. I had tried McDonald's french fries in the past thinking that they were small enough to eat. The problem is that they have a higher proportion of cooked exterior surface that doesn't break down as much in your mouth. Big time problem. However I did try a larger french fry once and in small bites that wasn't much of a problem. I can't quite eat them like normal but they still taste good.

Other things that I have added to my diet are Thai curries with coconut milk. Fortunately I really like this food and the biggest challenge I have is finding a protein that I can have with them. So far tofu and imitation crab work well. I also tried braising a duck leg quarter and while it took me awhile to eat it I didn't have the normal coughing fits afterwards. I also add in quartered slices of summer squash, zucchini and mushrooms to get some vegetables. It's pretty good and adds some variety to what I can eat.

Another tactic that I am trying is to eat things with less water. I reviewed my notes from the last meeting at Roswell Park. There are many aspects to swallowing. One aspect is the muscles that are actually doing the work. It appears that there are lots of muscles involved that require strength and coordination in order to swallow properly. One potential side effect is that the nerves will get damaged. I don't think that happened in my case. What has happened is that like the rest of my muscles those involved in swallowing have also weekend from lack of use. By using water to wash down every bite I am in essence "drinking" my food. Some of the reason for using water is to combat dry mouth but I also do it because it makes swallowing easier.

Going forward I am trying to swallow without drinking after every bite. Think of it has doing sit ups for your throat or push ups for your tongue. (Look for the new Boot Camp DVD : Throat of Steel. Coming to a store near you.) At first it was very difficult. After about 3 weeks it is getting easier and I can definitely tell a difference in my ability to swallow. The esophagus opening is still a big deal but even if my esophagus could open up more I would still need to strengthen those muscles and relearn how to swallow.

I'm A Vegatarian (Almost) and Didn't Even Know It

2008-12-18T08:07:00.003-05:00

Since the last dilation procedure I have been trying to find some additional food items that I could eat. Lets face it, there are only so many variations of omelettes until they start to get boring. One of my favorite ways to try out new things is to check out the Chinese buffet bars they have at grocery stores. Its a great way to try a small amount of something without having to commit to a full sized serving. (Yep... its that whole fear of commitment thing. Who knew that it applied to food as well.)

Last week I was checking out the buffet at the grocery store and they had Panang Tofu. For those of you that don't know Panang Ped from a local Thai restaurant is probably one of my favorite dishes. I figured that I would give it a try even though I am not a big fan of tofu. Sure enough I could eat it without too much of a problem. The only real issue was the carrots were cooked to be crunchy and that causes problems. The tofu on the other hand was no problem at all along with the steamed summer squash. (Some steamed vegetables are not a problem as long as they are soft).

Once again putting all those late nights watching the Food Porn, I mean Network, channel to good use I decided to give it a try at home. I tossed together a simple dish with Panang curry, coconut milk, steamed carrots and summer squash along with tofu and baby portabella mushrooms. At a bit of seasoning and poof, a almost normal dish that I could eat. Big time Yippee! on that one. Another thing I discovered is that the "heat" from this dish, it is a bit spicy, doesn't bother me as much as it would have a few months ago. I take that as a sign that my throat is starting to recover a bit more from the treatments.

One of the problems I have had with normal food is eating meat. In small amounts with lots of gravy I can eat dark chicken or turkey. I also tried some duck from the take out buffet as well. Some things like certain fish sticks or salmon if it is swimming is sauce are OK. Not having a protein has the main part of the dish has been a limiting factor. Now with the tofu option on the table so to speak some other possibilities are opening up. This will allow me to add a few more items to the list of things that I can eat at home while working on improving my swallowing technique and undergoing the dilation procedures.

Time to get back to the Food Network....

Dilation Procedure VII

2008-12-02T21:46:00.002-05:00

Today was dilation procedure number VII. This procedure was able to maintain my esophagus opening at 15mm but wasn't able to increase it beyond 15mm. I had hoped that it would increase to at least 16.5 mm but this isn't the first time that I have gone in and just was able to maintain the existing size.

When I went in today the doctor did ask if I thought it had decreased in size. At the time I didn't think it had but when I got home and tried some food it appeared to be easier to eat some things than it was before today so my guess is that the esophagus did shrink back some. One thing I don't know if this is related to my throat still healing from the radiation treatments. A few weeks ago (I know... I am remiss in keeping the blog up to date.) I met with the radiation oncologist and he said that the throat and nasalpharengeal region was still red and swollen.

Unfortunately the next procedure won't be until after January 1st. I have established a moratorium around the holidays and they would like to have more time than two weeks between procedures.

On the eating front I am able to eat things like omelets, mashed potatoes and other mushy foods. The key is that the food needs to be able to be chewed up into separate pieces and not come together to form a plug when I swallow. One thing I plan to try is to make some braised dishes. I think these should be able to work. At this point I am not using the PEG tube for feedings daily. By making food myself and taking some time I am able to eat enough to get off of the tube feedings. The radiation oncologist wants me to keep the PEG tube in until at least 1-2 months after I am done with the dilation procedures. Big time bummer on that one. I understand the reasoning and agree with it but it still would have been nice to have it removed.

Right now my short term goals are to try to broaden the food choices that I can eat somewhat normally and cut down the prep / eating time. I probably spend 4-5 hours or more at times a day on overage with food prep and eating to get enough calories to maintain my weight at its current level. The goal is to add some weight but for now I am happy if I can maintain. Fortunately with the holidays upon us I do have one great option available to me... eggnog! At around 400 calories for only 8 ounces it is an effective means to up the calorie count. An added plus is that I really like eggnog. (Have I mentioned that when all is said and done I will be ready for the cardiologist?) Seriously another recent food item that I have found I can eat is risotto. I made it for the first time this weekend and it worked out well. As part of my never ending food experiments I plan to try different variations to see what I can add to risotto and still eat it.

Operation Garbage Plate Update

2008-11-08T08:24:00.003-05:00

The front lines in operation Garbage Plate have made significant progress in the last week. Typically after a dilation procedure it takes about a week or so for things to settle down and then I can start to get a feel for where I am at regarding swallowing. It's amazing the difference that only an additional 1.5 MM in the size of my esophagus can make.

I have created three classifications for how I can eat foods. Those that I can eat somewhat normally, those that I can eat but with some problems and those that are still beyond reach. The list of foods that I can eat normally is still fairly short but growing. Most soups are now OK to eat. Some mushy foods like deviled eggs are also in that group though just eating the white part is still a problem. A surprise but welcome entry into the group are some cookies. The recipe for cookies on the back of the Heath Bar bits package, available in all fine and not so fine grocery stores, isn't much of a problem either. That is probably because over half of the cookies is sugar and the toffee candy bits. This is a great portable snack though really not a long term solution due to the potential dental problems. :-) Some other things in the somewhat normal category include deserts like cheesecake, apple pie if the skin is peeled off of the apples, some soft cheeses like brie, pate and some breakfast cereals like lucky charms.

In the I can eat it but with some problems category there are bean burritos, McDonald's grilled chicken snack wraps, rotisserie chicken with lots of gravy, meat loaf with lots of gravy, steamed chinese dumplings, some items from your typical chinese buffet and omelettes wit some fillings. (Thanks to Alton Brown my omelette technique has improved quite a bit!) These are items that if given enough time I can eat but not something I would want to do in public. If things get stuck going down there is only one other way for them to go. :-)

One thing I am learning is that there are multiple variables involved in what I can and can not eat. The esophagus opening is one item and that is slowly moving forward. The other issue is related to the change of geometry in my throat due to the treatments. It seems like anything with raisins in it is definitely out of the question. The problem is that the raisins, when chewed, seem to cling to the back of my throat. What is odd is that breakfast cereal with dried cranberries don't pose the same problem. The change in geometry and the dry mouth issues are something that at this point in time really can't be corrected. What I am doing instead is experimenting and essentially retraining myself to eat some foods differently. For example with burritos I know that they tend to form a plug in my mouth and can get stuck when swallowing. To accommodate that I am taking smaller bites but also swallowing it small amounts with sips of water. It took a few days worth of testing with some "interesting" results to get the technique right and I feel I will get to the point where I don't think about it anymore but do it instinctively. I liken this to the way a child learns to eat. They take a few years to move from liquids to mushy food to small solids. I am trying to compress this learning cycle into a few months if not less.

The next dilation procedure hasn't been scheduled yet. I think they want me to slow down a bit and see where I settle out at after each procedure. Most likely the next procedure will be after Thanksgiving. Around both Thanksgiving and Christmas I have decided to not have procedures just on the off chance something went wrong and I had to spend some time in the hospital.

Happy Anniversary!

2008-10-31T18:39:00.004-04:00

No... its not my wedding anniversary, that was a few days ago. It's the anniversary of the start of my treatments to eradicate cancer. It was a year ago today that I started chemo and radiation treatments. I always felt it was appropriate to start radiation treatment on Halloween. If it was a grade B horror film there would have been lightning in the background and some sort of mutation would have occurred. Just think about what cool super powers I could have gotten.

Fortunately it was just another day, one of many during the treatment phase. The net result is that 6 months after treatment ended there is no detectable sign of cancer. A big time yippee! for that. While I will be tested every few months the next major milestone is at 2 years. recurrence for this type of cancer is fairly low though they can't give me specific numbers. The population pool especially in my demographic is just too small. However I have been told it is less than 10%. Good news!

Now all that is left is the recovery phase a.k.a. Operation Garbage Plate. Things are proceeding according to plan and next week I will update where I am at and what the current state of swallowing is. My approach to recovery was mentioned in an column about cancer in the local paper. Here is a link to the article.

Dilation Procedure Number VI

2008-10-28T14:56:00.003-04:00

Today was dilation procedure number VI. The results were once again a success. This time we moved from 13.5 MM to 15 MM, a 23% increase in volume. This should start to open up some solid food opportunities. It takes a few days for the soreness to go down so I may wait until then to really try to push it. I was able to eat a can of clam chowder soup once I got home without a problem.

On other news I can just about eat macaroni salad without too much of a problem. That means one component of the garbage plate is almost in reach. Yippee!

Garbage Plates For Cancer

2008-10-19T20:01:00.002-04:00

What does this have to do with my recovery? Not much, actually nothing but a friend sent me a link to an article about how one fraternity in Rochester runs (literally) a fund raiser for cancer research that also involves a garbage plate. Definitely worth reading and watching. Here is the link.

Deconstructing a Garbage Plate

2008-10-13T13:53:00.005-04:00

No, this isn't some nouveau approach to cooking or an attempt to turn such a great culinary treat as the garbage plate into high cuisine. It's just my plan to take tackling the garbage plate in stages. The most recent dilation procedure has started to move me into the beginning of solid territory so along with the other food tests I thought I would start to tackle parts of the garbage plate. For those that have forgotten what a wonderful thing a garbage plate is here is a link to the video the food network ran. BTW I have been to Nick Tahoe's to have an authentic garbage plate.

So why deconstruct a garbage plate? One of the things that I have learned during my swallowing rehabilitation is that there is more involved than just opening my esophagus. In some respects I need to relearn how to eat again and my stomach needs to get used to eating again. It will take at least two more dilation procedures until I even get close but that doesn't mean I can't start training now so I am ready when my esophagus is. After all if you plan to climb to the peak of Mount Everest you don't just go and do it. You need to train, start at base camp and slowly progress up the mountain. Fortunately I won't need any Sherpas to scale the Garbage Plate. (Antacids yes, Sherpas no.)

The plan is to train to eat each component of a garbage plate separately. When I say eat I mean eat in a somewhat normal fashion. The target is the best garbage plate there is, the cheeseburger plate with macaroni salad and home fries. As things progress I will post updates. Who knows, maybe in just a few months I will be planting my flag on the top of the Cheeseburger Garbage Plate.

Dilation Update

2008-10-09T15:33:00.006-04:00

Today was dilation procedure number 5 and once again there was some success though not quite as far as I would have liked. This time around we got to 13.5 MM. It is a half millimeter less that what I was hoping for but still provides a 26.6% increase in the volume of the opening. They tried 15 MM but that was a no go. One interesting thing I learned about the dilators they are using is that they have a build in safety system where if they feel a certain amount of pressure they stop inflating. That is a good thing as it helps prevent any serious injuries. The next procedure should be in 4 weeks.

One thing I am learning about swallowing is that if you haven't done it in awhile it takes some time to get back into the swing of things. Even just chewing food felt strange the first week or so I tried it because it had been over 10 months since I chewed anything. After this latest procedure I was able to go home and have an entire can of Progresso Clam Chowder soup (2 servings) along with some bread with butter. Probably 500 calories total. Then I was able to eat some home made banana bread also with butter for around another 100 calories. While I am still not mainstream when it comes to food it is nice to be able to get a decent amount of calories through eating.

Over the next few weeks I will start trying to eat some more small solid items. Even if they don't go down well right away I have found that by practicing now when my esophogus is opened up wide enough they go down easier.

CT Scan Update

2008-10-08T14:15:00.004-04:00

It always seems odd to be rooting for negative results. The latest CT Scan came back negative and once again that is a good thing! I did wait until a bit after 12:00 today to call for the results and the radiation oncologist returned the call in about an hour. Everything looks good and this scan was probably the most comprehensive that I have had since my initial diagnosis. There is a certain amount of symmetry in getting the results this week. It was a year ago this week that I first was diagnosed with cancer.

Operation Garbage Plate Update

There has been some progress in the war on swallowing. A milestone has been reached this week. Last night I had to go to a meeting and afterwards one of the people suggested going out to a local place. Normally this is the tradition after these meetings. I figured I would give it a try and if I couldn't get anything on the menu then I would just get water. The place we went to served Guinness and since I was off of the Fentanyl patch... I figured what the heck. Of course being Guinness I had no problem drinking it. :-) Another plus was on the menu they had one item, an appetizer that I could almost eat normally. It was a baked brie and avocado on bread with sun dried tomatoes. I knew that the tomatoes was a definite problem so I asked if they could make it without them. It wasn't a problem and I was able, albeit slowly, able to eat most of it. So for the first time in about 11 and a half months I was able to go out to a place and get something to eat and drink. Admittedly it was only one item on the menu but it is a start.

What's On Tap For This Week

2008-10-07T10:34:00.002-04:00

Last week was a busy week with the PEG tube replacement, the CT Scan (no results yet) and coming off of the pain meds. This week is a bit lighter with just another dilation procedure scheduled for Thursday. This will be the 5th procedure and hopefully will get me up to 14MM. That would start to put me in the solids territory. 18-20 MM is the final goal. Supposedly once I get to 18 the size of my esophagus will no longer be the limiting factor in eating. Ideally I would like to get to 20 just to have some extra space to spare. I will post another update later this week when I get my CT Scan results back and / or after the procedure.

CT Scan Today

2008-10-03T06:30:00.004-04:00

It's hard to believe it but just about 6 months has passed since they pulled the PIC line out on my last chemo treatment. To celebrate its time for my 6 month CT Scan today. Yippee! Yes, I do know how to live it up don't I? Seriously 6 months is one of those milestones after treatment to see how you are, or more appropriately put, how the cancer is doing. Today's CT Scan will be the whole thing, head and neck, so it will take a bit of time. The only pain about this, aside from the IV, is that because I am allergic to the contrast dye they use for the scan I have to take some prep medicines 13, 7 and 1 hour before the procedure so it doesn't make for much sleep the night before. I probably won't know the results until sometime mid next week or so. My next appointment regarding the cancer is with the medical oncologist in 2 weeks though if I don't hear anything I will call before then for the results.

Speaking of medicines I dropped the last remaining one from treatments. I am now off of the last medicine from my treatments. I dropped the Fentanyl Patch this week. It takes a day or two to work its way out of my system and then up to a week of withdrawal side effects. This is one of those heavily controlled pain medications. I decided to drop it because I think most of the pain left in my throat is as a result of dry mouth. (Also the side effects from the patch were not all that fun.) Without the patch I can get a better feeling for how I am doing in managing my dry mouth condition. Now instead of doing the mouth rinses and such on a pre set schedule that doesn't take into account how my mouth and throat are doing I can more appropriately use them on a as needed basis. Fentanyl also helps contribute to dry mouth so hopefully this will allow me to produce more saliva.

Time To Replace Some Plumbing

2008-09-30T07:36:00.006-04:00

My PEG tube has been getting loser and this weekend it seemed like it wanted to just pop out. While I can't wait for the day when I can get rid of the thing today is not that day. So on Monday I called the GI docs office to let them know what was happening. They said as long as it hasn't popped out of the hole yet then I should be OK and they scheduled me in to have it replaced today. One thing I like is these guys use terms even I can understand. Technically the hole is called the stoma but it took me a few months to figure that out. Fortunately they had my size of the button style PEG tube in stock at the hospital. When I first had it put in to replace the old one they had to order in a kit for my size.

Today I got to go in get it replaced. It turns out that the balloon on the inside that holds it in place ruptured. The way the PEG tube works is that there is a balloon on the inside that gets inflated with saline after it has been inserted and deflated when it needs to come out. This is how the PEG tube is held in place and tight to the stomach. Fortunately this time around the replacement was easy. I was in and out in an hour and a half and the first hour was spent in the waiting room. With the public WiFi and my iPod Touch I had no problem passing the time. The new PEG tube has a smaller stem and that is good. This makes it hold tighter to the stomach and keeps it more secure.

BTW the GI doctor probably described my approach to recovery the best. His said that I was aggressive in my pursuit to swallow again. That suits me fine.

Hot Diggity Dog

Once again living life on the edge I decided to try some more food experiments this weekend. We were at a tailgate party and I decided to try a half of a hot dog. Surprisingly I was able to eat it in very small bites. It took lots of sips of water but it did go down. Eating it wasn't exactly normal but I have approached eating and swallowing from a new angle. My view is that aside from the operational mechanics such as the size of the esophagus and saliva production there is also getting used to actually eating again. When I first started drinking liquids again it took quite a bit just to get a few ounces down. Even when my esophagus opened up it took some time to get used to drinking. Eating I feel is going to be the same way. So while eating a hot dog isn't an enjoyable experience now I am hopeful that in a few weeks after my next dilation procedure it will be better.

Music Therapy

Most of my blog entries the last few months have focused on Operation Garbage Plate. One thing that I have not mentioned is some of the other side effects. One that is related to the chemo is neuropathy. In my case this manifests itself in a loss of dexterity in my fingers. To help combat this I was trying to figure out what exercises I could do for my fingers when it hit me. Start playing the piano again. So starting this week I am adding in some time playing the piano each day to help increase the agility in my fingers. I am optimistic this will help.

My Schedule

As it stands now I am making definite forward progress in Operation Garbage Plate. My next dilation procedure is tentatively scheduled for October 9th and hopefully we will hit the 14MM mark this time around. To keep things moving forward I am trying to at least eat small amounts throughout the day that maximize the use of my esophagus to keep it from closing back up. This week I have a CT Scan on Friday that is my 6 month followup. It hasn't quite been six months since the end of treatment but its close enough. I was told it could take 7-8 months for most of the recovery process to happen and at the 1 year mark I would have a good idea of the ball park I would be in.

Forward Movement On The Front Lines

2008-09-26T08:50:00.002-04:00

Yesterday was the fourth dilation procedure and the results were positive. In this case positive is a good thing. This time around they were able to go from 10MM to 12MM. That results in a 44% increase in volume that the esophagus can open. It is definitely a move in the right direction. One difference this time around is that I did make an effort to try to swallow larger amounts of liquids or solids (mushy stuff) to the point of being uncomfortable or some slight pain. The thought here was use it or lose it. My throat is still healing from the treatments and will be for a few more months. That means strictures are still going to form and that is what is narrowing the esophagus. Prior to the procedure yesterday I told the GI doctor this and he said there was some validity to that. Going forward my intent is to continue this practice until my throat is healed. One technique that I have developed is to take a large sip of water and then do a "hard swallow" where I try to force it down as fast as possible. I do feel some momentary pain doing this but I feel that demonstrates that it is pushing the esophagus to its current limit and breaking any strictures that may have recently formed.

I did find a study that looked at the sizes of the esophagus in relationship to swallowing disorders. Anything below 18 MM was considered a problem for swallowing solids with 13 MM considered the minimum for any solids. Below 13 MM liquids start to be a problem. I can attest to those numbers at this point. Being at 12 MM makes a huge difference swallowing liquids compared to 10 MM. When I got home yesterday I was very hungry. Because the procedure is done under general anesthesia I can't "eat" for over 8 hours before the procedure. That generally puts it in the middle of the night so for me its over 12 hours without any feedings. The first thing I had when I got home was some Progresso tomato soup and I had no problem eating it this time around. It was easy enough to eat that I had two servings and was able to get 360 calories from it. This soup is pureed and has no solids in it but I did have a slice of bread with butter. If I ate the bread in very small bites with the soup and it was almost a normal meal and close to 500 calories.

At this point Operation Garbage Plate has almost fully liberated, I mean reclaimed, eating liquids. My next procedure will be in a few weeks and hopefully this will start to reclaim some ground in solid territory.

I Need To Move To France

2008-09-24T07:47:00.002-04:00

No.. its not to pursue some experimental procedure or get freedom fries from the source. My desire to move to France is a bit more decadent. It's for pate and brie. I made an interesting discovery in the war on swallowing this week. On the weekend Sue picked up some port wine cheese. Always looking for things to test out in the mushy diet category I decided to try some. Also wanting to continue my quest to live life on the edge I decided to try it with a bit of a cracker that was also out on the counter. I discovered two things. First that that particular brand of port wine cheese wasn't all that good. Second that cracker brand was made with swallowing disorders in mind. (OK, maybe they had other things on their mind but I can dream can't I?) This particular cracker brand tended to crumble into nothingness and unlike other bread type products didn't reassemble into a mushy plug in your mouth but stayed separate. That is a key feature when your esophagus is narrowed like mine. By staying in particle form I was able to actually eat the cracker with something on it.

So what does this have to do with France? Two days later I was at a local grocery store checking out the various food buffet bars. I was near the cheese counter and took a look over there and saw that they had pate but in larger portions than I was comfortable buying for an experiment. The person at the counter asked if they could help and I said sure. I explained my situation and she offered a taste of the pate to see if I could eat it. Sure enough the pate went down without a problem. I could actually eat it like I normally would have and I didn't even have my water bottle with me. Of course this makes sense seeing as pate is essentially pureed chicken or duck livers with added flavoring. (Yes I know, surprising that someone who has named their swallowing recovery "Operation Garbage Plate" would also like Pate.) The person at the store cut the portion they had in the case in half and off I went. At home the pate with the cracker was the perfect in between tube feedings snack. It has the added bonus of having lots of fat and calories as well. (Did I mention I need to eat between 2,500-3,000 calories just to maintain my weight?) It took less than 24 hours for the Pate to disappear.

Still, what does this have to do with France? Well in the interest of science, and my being able to taste something other than Ensure, I decided yesterday to give brie a chance. Now that I had a snack transportation vehicle that worked, the cracker, I decided to try a mushy cheese and what better one than brie. (Really, I do have diverse taste. Or put another way I will eat almost anything.) The brie also went down OK with the pate. Not quite as easy but still not a problem.

Once again... what does this have to do with France? The French Connection part comes back from my college days when I spent some time back packing around Europe. One of the things we would often do for an inexpensive lunch was get a loaf of bread (of the french variety of course) some pate and brie, find a park bench and that would be lunch. You could get that stuff at almost any market and they would have a wide variety of types at different prices. Here these items are treated more as high end gourmet foods and are priced appropriately. Also the selection, at least locally, for pate is very limited. While these foods are great for me to have at home they don't do much to increase my food mobility in this country. However if I lived in France....

Of course now I can find a use for the time spent watching the Food Porn, I mean Food Network, Channel. Today I am going to try to make my own Pate with a recipe from Emeril. At around $14 a pound for store bought vs. around 2$ in ingredients to make at home I figured it was worth a try. The brie on the other hand I am going to leave to the professionals, for now at least. :-)

So score another small victory for Operation Garbage Plate. (Hmmm... maybe a pate garbage plate would work.) Today brie and pate tomorrow Stilton Blue Cheese. Viva la France! :-)

Operation Garbage Plate: New Mission This Week

2008-09-21T21:55:00.003-04:00

Another dilation mission, I mean procedure, is on for this week. This one will be two weeks and two days after the last one and hopefully my esophagus won't have closed up again. To help avoid giving back any ground that was gained I have developed a new strategy regarding eating. My first strategy was to try to get back to eating some of the foods that I normally would have eaten before starting treatments for cancer. I tried, without much success, things like bits of a cheeseburger, clam chowder soup and such. Foods that I though would be obvious success's but didn't work out so well.

The axiom that a battle plan is only good up until the time a battle is joined rings true in this case. As I have mentioned before there are several physical aspects to swallowing one of which is the ability of the esophagus to open up enough to swallow solids. This time around I decided that the primary goal in eating was just that, eating. Anything that I could get down even if it wasn't pleasant or something I would usually eat is what I planned on trying. That along with drinking large sips of water. While I have a nifty thermos bottle with a straw that I carry around with me at home the goal was large gulps of water from a glass. That is a much more efficient means of drinking large amounts of water. The goal with all of this was to keep using the esophagus, hopefully up to its current maximum size, so that it couldn't start to seal back up. On Thursday we will know if this works or not.

The idea for this approach came to me when I started the exercises to increase the opening of my mouth. The morning is the time when my mouth opens the least. I think this is because it has had all night to start to go back to where it was and give up some ground. To counteract this I have to do exercises multiple times a day. Then it came to me (Que revelation music now) that this may be what is happening to my throat. It is still healing from the treatments and if it isn't being used then it will close back up.

The primary foods that I am eating are deviled eggs with the egg whites, Jello Instant Pudding Cheesecake, waffles cut into minuscule pieces with lots of maple syrup, home made candied peanuts (I would have never bet that would work but it does, sort of.) and pureed soups. I picked up a small food processor with a big motor to puree soups like split pea. So far it is working out well. A larger food processor would not do as good of a job. Thanks to the Mega Industrial Food Appliance Complex (M.I.F.A.C. for short. :)) for providing an endless set of kitchen gadgets.

I plan to keep up the eating attempts to keep the esophagus open and hopefully this week we will find out that has worked. Hopefully we can keep to the same schedule and have the next two procedures also scheduled only 2 weeks apart. Then I could get in 2-3 more procedures before Thanksgiving.

All's Quite On The Western Front

2008-09-10T00:47:00.003-04:00

Bonus points to anyone that understands that reference! It does describe how the last few weeks have been.

Everything is going well at this point. I am continuing to get my strength back and have continued but slowed down my food testing. I met with the medical Oncologist the week before labor day and one thing they were concerned about is that I lost some more weight. So as a result I am focusing more on doing PEG tube feedings now to help gain some weight. I am not overly thrilled by it because it is disruptive to have to keep using the PEG tube for feedings during the day. Still weight gain is important so I am focusing more energy on that for the moment.

On the food front I have made some interesting discoveries at two picnics we attended on Labor day. The first is that the filling for deviled eggs goes down pretty good. I made a basic filling at home and put it through the strainer. I worked without a problem. The egg white portion on the other hand was an issue. The other interesting discovery was that the instant Jello Cheese Cake is good to eat in small quantities. It also dissolves into nothing in your mouth. The down side to all of this is that so far getting protein and fiber has been elusive. There may be a solution on the way though. I have tried things like split pea soup but the problem was with the bits of skin in it. That would cause problems that really were not much fun. However a neighbor just made some lentil soup that I am trying out. She ran it through a food processor and then a strainer. It is pretty thick so there is some substance to it but more importantly it does seem to go down OK and has both protein and fiber in it. Big time plus there and it also tastes pretty good. Right now my throat is pretty sore from the dilation procedure I had done today but I plan on eating it in the next few days when my throat recovers. I could eat it now but it is hurts to swallow and I would rather wait and eat it when I can enjoy it.

That brings me to the next item. Today, or actually yesterday, I had dilation procedure number 3. Unfortunately we didn't make any forward progress. My esophogus had started to close up a bit and they were able to open it up back to 10 MM again. The plan is to go in in 4 weeks for another procedure. I am committed to keep doing this until I stabalize in the 16-18 MM range. With another 40-50 years left to go I figure it is worth the effort. After all there are so many foods still waiting out there for me to eat. It would be shame to disapoint them.

So that is where things are at. Lots of activity in terms of appointments and such but in the end my swallowing function is still where it was about a month ago. I am more aware of what works and doesn't work now but from a functinal point of view things haven't changed. All's Quite On The Western Front as the saying goes. :-)

Operation Garbage Plate: The Avocado Mission

2008-08-26T17:23:00.003-04:00

Things have been moving slowly in the last week or so. I had a regular checkup with the medical oncologist and I dropped 5 pounds or so since the last visit. It was suggested, in a nice way, that I shouldn't measure success by getting off of the PEG tube as fast as possible. In other words focus on the weight. :-)

I had tried to get to the point where I would use the PEG tube for about half of my nutrition and would try other things. The problem there is that it is hard to get in the calories when it takes a half hour to eat a poached egg. So I am back to using the PEG tube as my primary source for calories and nutrition. I can drink things like Ensure and Carnation Instant Breakfast but they are not meant as a long term by themselves diet where the feeding supplies they give me are. Right now I use Ensure primarily as a portable nutrition when I may not be able to get back to do PEG tube feedings.

There has been some moderate success on identifying foods that I can eat. I may do a post at some time about what I have learned from my food experiments. One thing that was suggested to me was to try a mashed up avocado. In essence guacamole without the solids like tomatoes or onion. It turns out that the avocado actually went down pretty well. It wasn't fast and still took almost an hour but it is a pretty good source of calories and does have some nutritional value unlike the milkshakes I make on occasion. It isn't going to replace the PEG tube feedings but it is something else to eat on occasion.

I am in good company

2008-08-20T13:58:00.002-04:00

I was recent sent a link to this article. It appears that Babe Ruth and I have something in common, the same type of cancer. Now if only we shared hand eye coordination. :-) The article is a good read and definitely shows how things we think are true in fact may not be.

Waking Up Miss Silvia

2008-08-19T19:11:00.004-04:00

Another major milestone was reached today. I fired up my trusty espresso machine. For the past week or so I have tested the waters with some cappuccino's from my favorite coffee shop. Those have gone down without a problem so I purchased some fresh roasted espresso beans from the same coffee shop and today I brought Miss Silvia out of retirement.

For those of you that don't know I am a bit of a coffee addict. In particular espresso. I have a Rancillo Silvia, aka Miss Silvia, home espresso machine that can make with the proper grinder and fresh roasted beans shots of espresso just like you get at a coffee shop and in some cases (say... Starbucks) much better. (Yep... you can just feel the espresso snobbery. :-))

The picture above isn't my specific machine but the grinder shown and bean storage container are the same as I have and this is pretty much what my set up is like. Now I can combat fatigue the traditional way, with caffeine.

Another Milestone

I did also reach another milestone today. Today I started the drug to help with saliva production. Its a pill I have to take 3 times a day. The pills are pretty small, 0.3 inches in diameter, so I thought I would give swallowing them a try. The test was wildly successful and swallowing these pills with water was not a problem. This is great news because crushing up pills and putting them through the PEG tube gets real old fast. One of my hesitations on going on this medicine was having to take 3 additional pills through the PEG tube. Being able to just pop one in my mouth and take it with a glass of water is a huge step forward.

A Few Steps Forward and One Step Back

2008-08-17T16:08:00.004-04:00

So far the results from the last dilation procedure have been good but not what I expected. As I mentioned the procedure went well and was better than last time. Drinking liquids is definitely easier. What it has done is highlighted other problems that are related to dry mouth.

The New Battle Begins

Up until now I had set aside the dry mouth problem. This was for a few reasons. First I didn't want to add in another set of drugs into the mix at the time I was still recovering from the cancer treatments. The second reason is that I am still only 4 and a half months away from the end of the last chemo treatment. I have been told that it is during the first 6 months most of the recovery occurs and after about a year I should have a good idea of where I will end up at. Finally I am on some drugs that cause dry mouth. So my view was that taking on dry mouth at this point may cause some additional problems and at the same time it would be chasing a moving target.

My first priority was the swallowing problem. (After all, there is only so much time left in the BBQ season!). That was a problem that wasn't due to the drugs I was on and seemed to show no improvement at all so that was the one I decided to go after first. Now with my esophagus opened up to 10 MM some other problems have become apparent and it appears that while pursuing the swallowing problem I will simultaneously pursue some other issues as well.

This approach actually appeals to me. One thing I don't like doing is just sitting around waiting and hoping things get better. I would rather have a plan and things to do.

Operation Garbage Plate

Next up is operation Garbage Plate. One of my food goals is to be able to eat a garbage plate. Other than the crusty bread served with a garbage plate everything else on it looks like something I should be able to eat. Two cheeseburgers (no buns), macaroni salad, home fries (real ones made on a grill not fried) covered with a chili type sauce and onions. I may have missed something but all of that is solid and can be cut into small pieces if required.

There are 3 fronts in Operation Garbage Plate. The first front I haven't really talked about in the past is how much my mouth can open. Right now it is very limited and I couldn't get a hot dog in there if I tried at this point. Well, maybe without the bun but that is it. There is a device that has been recommended to me called Therabyte that helps stretch your mouth a bit at a time. Basically you use it 7 times a day and after several weeks you start to stretch the muscles of your mouth to increase the opening. It can be a bit painful and requires doing multiple times a day but at least there aren't any drugs involved. This isn't required to eat food but will make it easier once I get to that point.

The second front is the one that I have been focusing on and that is my esophagus opening. So far that has been going well and most likely will take another 3-4 procedures to complete. My final goal is to get to somewhere over 15 MM and keep it there. Fortunately the doctor that is doing the procedures is taking a cautious approach to avoid any damage and has done quite a bit of research on the procedure. One of the nurses at the last procedure told me that they ordered in dilators just for this. Way to go GI doc!

The third front is dry mouth. I was aware this was going to be a problem but I wasn't aware of how much of a problem it would be. This is going to be the hardest one to solve. There are basically 2 parts of this problem that need to be addressed. First is the production of saliva. The second is the results of dry mouth on my mouth and the swallowing process. This is what I didn't realize, that dry mouth affects swallowing more than just a lack of liquid to chew food with. Dry mouth injures the oral cavity and that causes problems with swallowing. In my case the back of the tongue is sore when I try to swallow as a result of dry mouth and based on my meeting with the radiation doctor on Friday there is a large section of the back of my tongue that is coated with a thick cover of mucus. This appears to be where the current swallowing problem is coming from. Food particles are getting stuck at the back of the throat on what I have found out it the tongue. (BTW one thing I have found is that the tongue is a lot bigger than you realize. Its definitely several times larger than the part you use to eat an ice cream cone with or stick out at someone. :-)). This area is also near the part of the throat that covers your airway when swallowing. As you can imagine getting something stuck there has some interesting consequences. :-)

So the plan here is two fold. First tackle the cause of dry mouth and that is saliva production and second tackle the side effects in damage to the oral cavity from dry mouth. I had started somewhat on tackling the impact on my mouth. There are a series of products from a company called Biotene that are used to help treat dry mouth. These are essentially a special tooth paste, mouthwash and spray to help when your mouth is dry. I can say that they do have some positive impact. In addition the radiation doctor added a new drug into the mix that increases the production of saliva from the glands that are still intact. He also gave me a sample of a prescription mouthwash to use. This is supposed to help treat the effects of dry mouth. Last he took me off of the sea sickness patch. This patch was used to help control the mucus flow but it also increases dry mouth. He felt my body may have become dependant upon it to regulate the mucus flow. The downside is that the mucus flow is back but he feels that after a week or two it should subside. Fortunately at this time I am not dealing with all of the other issues that I was back when I was undergoing radiation and chemo therapy.

Hopefully the multi front approach of operation Garbage Plate will meet with success. The hardest part of all of this will be dealing with the mucus build up on my tongue that is causing food to get hung up on it. I had better get to work, there are Garbage Plates waiting to be eaten!

Quick Dilation Update

2008-08-12T17:21:00.003-04:00

The dilation procedure went well today. They did not have to go in through the the stomach so no worries there. This time they were able to open my esophagus to 10 MM. That is approximately 0.40 inches. 10 MM is short of the final goal of 15 MM or more it is a definite improvement and going in the right direction. While 10 MM is only a 25% improvement in diameter is a 56% improvement in area. 8 MM was a circle with an area of approximately 50 MM. 10 MM is circle with an area of approximately 78 MM. On the other hand 15 MM is a circle with an area of approximately 176 MM.

For the first day they want me to consume liquids only. My throat is sore from the procedure but drinking is easier and feels more normal than it did before this dilation. That gives me hope that I may be able to start to some small solids in the next few days.

Whats On Tap This Week

2008-08-10T14:18:00.003-04:00

Dilation #2 is scheduled for Tuesday this week. So far the first one seems to be keeping open. It may have shrunk a bit but I am still able to drink liquids better than I was before. We were on vacation last week and I was actually able to order a kids size soft serve ice cream in a cup and eat it. (A ice cream cone at this point would have been a definite problem.)

For this go around I am hoping that they are able to open it up enough so that I can start to try small solids. Things like soft fruits and such. One thing the first procedure did highlight is my dry mouth condition. Now that I am able to swallow liquids better what little saliva I have doesn't just hang around. I plan to start looking into some of the treatment options available in the next few weeks. I am generating some saliva but not enough to eat any type of dry food with. I tried a junior mint candy the other day and while I was able to swallow it in small amounts OK it was a challenge because there wasn't any saliva to help it go down. How important saliva is to eating and oral hygiene is one thing that this whole process has made me aware of.

One plus to being able to swallow liquids better is that I have given Ensure another try. The new improved flavors are definitely better than before. Still not what I would reach for as a preferred drink but they are now drinkable. What this means is that I can start to substitute those in for some of my regular feedings. This lets me have some portable nutrition and be away from my feeding supplies for longer periods. Last week we were on vacation up in the Thousand Islands area and it was a big help being able to drink Ensure while out and about.

I am hoping that after the next dilation procedure I will be able to start to get more of my nutrition from regular foods. I will probably post my next update at the end of this week after my throat has recovered from the procedure.

There Is Always Room For Jello

2008-07-30T11:34:00.003-04:00

A quick update on the swallowing and eating saga. At this point I can drink liquids in a more normal manner than I was in the past. Also drinks like the yogurt smoothies you can by in the store with bits of fruit in them are also OK. I can feel the fruit going down but it isn't a problem.

Eating solids on the other hand is still not there at this time. After the dilation procedure I esophagus was widened to 8 mm. That is about the size of a cherry bit. However I think it has shrunk a bit based on how drinking liquids feel and 8 mm is the max opening. As I learned trying a very watery pork and beans eating anything that is near that size just doesn't work. Jello on the other hand seems to go down OK. Its slippery enough and when you chew it it breaks into small pieces and doesn't stick together. That helps it go down. Outside of that non liquids are not possible at this point.

The next dilation procedure is scheduled for the second week in August. Hopefully after that procedure I will be able to try to eat some solids. From what I understand 3-5 dilation procedures may be required to get my esophagus to be wide enough to eat "normal" foods and not have the opening close back down.

Swallowing Update

2008-07-23T07:39:00.002-04:00

So far the results from the dilation procedure have been positive. I am not eating solid food yet but drinking is definitely easier and and I am able to eat things like soup with some small solids in them. Right now I am testing out different foods being careful that none of them have anything larger than 8 mm in them. I also did try a silver of a chocolate chip cookie yesterday. One thing I noticed is that it feels strange to chew anything. It makes sense seeing as the last time my mouth had to chew anything was around 8 and a half months ago. (Ahh... how the time flies when you are having fun. :-))

One thing that has become more apparent is dry mouth. Now that the esophagus is opened up a bit more the saliva I do generate goes down the esophagus when I swallow. Also my saliva production has been damaged by the radiation. At this point it is impossible to tell where I will end up. I am still in recovery mode and will be for several more months. I also am still wearing the scopolomine ear patch and the pain patch. Both of these contribute to dry mouth. For the moment it is only a problem when I talk for more than a few minutes, eating of course and sleeping at night. I have started to carry a water bottle with me during the day to help with dry mouth when talking. That seems to work. Also at night there are some products I can use that will help with dry mouth at night. As for eating I am going to have to learn how to eat using sips of water between bites.

I did meet with the GI doctor yesterday and the next procedure is scheduled for the second week in August. Unfortunately between his schedule, my schedule and being on blood thinners there wasn't any other earlier time that would work. I could have had it done this Thursday but I need to be off of the blood thinners for at least 5 days prior to the procedure. Unfortunately that means Thursday was out. Big time bummer.

All in things are moving forward. I think after the next procedure I will start to get a bit more adventuresome in the food that I try and see if I can eat some "normal" food.

Plumbing Update

2008-07-18T14:46:00.002-04:00

I had the esophageal dilation procedure done on Tuesday and for the most part it went well. There were some minor problems but as I have said in the past I am working on making sure I experience all the possibilities. :-)

The first issue that came up was how much I could open my mouth. Because radiation makes the tissues in the area affected more fragile they were going to put in a airway tube to protect my breathing. Unfortunately due to lack of use and strictures from the radiation my mouth doesn't open up as much as they would have liked. This meant that they had to use a different type of sedation in order to put in the tube. No big deal but one more thing that would take some extra time.

The larger problem was with finding an opening to thread the balloon through. In order to do the dilation they need to fin some opening that they can thread the deflated balloon through and then inflate it. If they couldn't find one going in from the mouth then they would have to go in from the stomach. Of course I already have a ready made opening in my stomach where the PEG tube is.

So around 8:00 AM they put we under for what is normally a 30 minute procedure and I woke up in the recovery room around 11:00 AM. Why the extra time? Part was from putting in the airway tube but unfortunately they couldn't find an opening going in from the mouth so they had to go through the stomach. To do that they had to remove the PEG tube and then dilate the hole that went in so the scope and dilator could fit. Basically they had to widen the stoma (aka the hole in my stomach) to fit the tools through. Then they were able to find a opening from below and successfully dilated the esophagus to 8 millimeters. Not as much as I hoped for but enough to make some difference in swallowing liquids.

The major side effects from the procedure were being out of it for the rest of the day due to the anesthesia, soreness in the stoma (aka the hole in my stomach. :-)), (they did put the PEG tube back in) , and a very sore throat from the procedure. Fortunately the soreness in the stoma area and the throat have subsided by today.

The first day due to the sore throat and being out of it I didn't do much testing of swallowing. I did drink some water right when I got home and it was easier to swallow. When the meds they gave me during the procedure wore off and the sore throat really kicked in I stopped testing.

The next day we went to the Roswell Park Cancer Institute for a follow up appointment now that I have completed the treatment plan. One of the goals was to get more information on esophageal dilation in cancer cases like mine. Based on what the doctor said the goal for normal swallowing function is to get the esophagus to open up to at least 15 millimeters. It will take a few procedures to get there and it may take a few o keep it there. Sometimes the esophagus will start to close back up. Aside from opening up the esophagus to swallow there is a certain amount of coordination between muscles in the throat in order to swallow. Fortunately it appears as if that part is working OK. I meet next week with the GI doc for a check up on this procedure and the plan is to schedule the next one in 3 weeks.

The initial results have been positive. I can swallow liquids in a "normal" manner. I am also starting to test liquids with some solids in them. Egg drop soup seems to be going down fine. prior to the procedure the egg strands would give me problems. The only major issue so far is I need to water down any liquids that are acidic. They tend to burn the throat. I did try some tomato bisque that I couldn't swallow at all prior to the procedure. I can swallow it now but it is too acidic to eat at this point. Later this weekend I plan to try cream soups like shrimp or crab bisque. As much as I would like to hurry the process along I need to be careful and take it slow at first. Hopefully when I have the next procedure in August I will be able to move on towards solid foods. Then I start to attack the recovery food list.

Other News From Our Visit To Roswell

A few other questions I had for the doctors up at Roswell were regarding other side effects, follow up testing, recurrence and milestones. Starting with milestones the major ones are 6 months, 2 years and 5 years. They took a look at the latest test results and also used the scope to look in the nasal area (Really, I think all doctors in this area of medicine just look for reasons to use that thing. :-)) Based on the results and what they saw they also felt I responded well to the treatment plan. Regarding dry mouth there are some drugs that are available but they are only about 30% effective. For now the dry mouth is a problem but not so much that I want to start taking drugs for it. First I want to solve the swallowing and other throat problems. Even just being able to drink more water is helping with the dry mouth. The other question I had was about fatigue. He did order up some additional blood tests to check my thyroid function. One of the comments that he did make was that basically I won't know where I will end up at until about a year after the end of treatment. That basically means I should continue to improve for awhile yet.

A Twisted View Of Food Labels

One thing I don't think I have mentioned is I have been searching for higher calorie foods in liquid form. I have found some like Carnations Instant Breakfast that you add to milk and smoothies in a bottle. The other day I found in the dairy section a Chocolate Milk Shake in a bottle. It was over 400 calories! Yep, now I get excited by things with high calorie counts. At the current point in time I need to consume somewhere around 3,000 calories to maintain my weight.

Time for the Roto Router Man

2008-07-12T15:02:00.003-04:00

Last week I met with the medical oncologist and the GI doctor on Monday and Tuesday. The meeting with the oncologist was fine. We discussed the side effects I am still feeling and I told him about the esophageal dilation procedure. He agreed that it was a good idea and said that they have referred people to the GI doc for that procedure. One potential hang up is the blood thinners that I am on. He said I can go off of those for the week before the procedure. (Yippee!!! Warfarin is definitely not a fun drug.) For now the only drugs I am on regularly is the ear patch and pain patch.

The next day I met with the GI doc to talk to him about the dilation procedure. He reviewed the written report from the swallowing eval and also agreed that this was the direction to go in. Normally they dilate the lower esophagus but he has worked in the upper esophagus area as well. Because it is near my wind pipe and I had radiation treatment to the area they are going to proceed slowly and just try to open the esophagus up a little bit at a time. This means I will most likely have to undergo several procedures. I am OK with that if it works. There is also the potential for the throat to close back up after a period of time and the procedure would need to be repeated. I view it as cleaning out the plumbing. From what I have read in some cases the procedure takes and there isn't much if any follow up treatments required. In other cases it appears that the procedure needs to be repeated every few months to keep things open.

Basically the procedure involves the doctor, with the aid of scope, threading a wire down my throat to find a passageway that is open. Then they slowly inflate a balloon to open up the area that does not open when swallowing. In my case this is most likely due to strictures that formed as a result of the radiation treatment. The radiation treatments will make the esophagus more "fragile" so they will proceed carefully to avoid tearing or puncturing the esophagus. They may also put in an air tube to protect my breathing. Fortunately I will be under sedation during the treatment. For those that are interested here is a link to a video on YouTube that shows the procedure.

All in the procedure takes less than a half hour. I go in early in the morning on Tuesday and should be back home by mid morning. From what I have read they will be able to tell almost immediately if it worked or not. It it does work then I should be able to start to swallow normally and eat some foods like soups that have bits of food in them. Right now I can only consume things that are liquid or readily melt into liquid form.

Also later in the week I head up to the Roswell Park Cancer Institute to have them review my current status and also talk to them about the side effects that are persisting. I did discuss the dilation procedure with the lead doctor on my case and while he couldn't comment on my specific situation he did say that dilation is often done in cases like mine. He also mentioned that he has worked with my ENT Doctor on cases and would trust his opinion.

I will try to post an update on Tuesday about how the procedure went.

Mortimer not Mic-Key

2008-06-24T08:32:00.002-04:00

The PEG tube replacement went off without a hitch except that they didn't order the Mic-Key replacement but what I would call a Mic-Key knock off. While the nurse was setting me up for the replacement procedure she gave me the manual to the PEG tube replacement. I then became aware that it wasn't a Mic-Key tube but one that looked like it. Normally I wouldn't be concerned about something like that, most of the drugs I take are generics but in this case the Mic-Key tube made specific statements about being able to swim with it while this other one mentioned nothing about swimming.

We had time before the doctor arrived so the nurse researched the replacement tube and called the company that makes it to ask about swimming with it in. She also called the manufacture of the Mic-Key tube. Interesting enough neither company would give the green light for swimming. My guess is that they don't want to commit even though the Mic-Key tube uses swimming as part of its marketing on the web site. They have a story of a girl with a Mic-Key tube that swims and goes to water parks.

From looking at the tube they wanted to use on me and the Mic-Key I couldn't really tell any difference. I spoke to the doctor when he arrived and he couldn't see any reason I couldn't go swimming with the tube they were going to put in so we went ahead with the new tube. So far everything with the new tube is working out fine.

Swallowing Update

The day before the PEG tube replacement I met with the ENT doctor to review my status. At the meeting I asked him to take a look at the swallowing evaluation and get his take on the dilation procedure. He looked at the swallowing evaluation and called the next morning to let me know that he felt esophageal dilation would be appropriate for the procedure.

This week the Roswell Park cancer center called to reschedule my follow up appointment. Initially they wanted to move it to August. I was not overly amused by the delay and was able to get them to reschedule it for the middle of July. At the same time I was able to get a moment to talk to the doctor on the phone about the dilation procedure. He said that it is done in head neck and throat cancer patients and that he has worked with my ENT doctor on several cancer cases a year and would defer to his opinion on the procedure.

Then just a day later I was at the ball park with my youngest son and ran into a person that I I knew from my sons team in prior years. He didn't know that I was being treated for cancer and I mentioned the dilation procedure he knew what I was talking about. Apparently he had it done on him self for a narrowing of the esophagus from a different cause. He used the same GI practice that I do and said they do hundreds of these a year. Good news! (See, all of the good info can be found just hanging out at the ball fields or in the Winter at the skating rinks. :-)). This is good news as I am scheduled to meet with the GI docs next week to discuss the procedure and have them follow up on the PEG tube replacement.

Speaking of next week I have a follow up appointment with the medical oncologist to check on my status and I also have the appointment with the GI doctor to discuss the dilation procedure. Hopefully they will be able to do the procedure locally and I can have it done in July. Initially I had wanted to have it done at Roswell Park but given the delay in scheduling and that the local doctors have done several of the balloon dilations I am starting to feel more comfortable about having the procedure done locally. Also I will most likely require several procedures to fully widen the esophagus and some patients require follow up procedures as maintenance. With radiation patients they tend to be more careful and only try to enlarge the opening a bit at at time.

Sing it with me... M I C...K E Y...

2008-06-19T18:45:00.002-04:00

No, I haven't joined the new Mickey Mouse Club, yet that is. The Mic-Key is a type of PEG tube that is waterproof. Tomorrow I get my PEG tube replaced with a Mic-Key tube and this one will let me do things like go swimming and kayaking, if I am up to it, on the lake. The current tube can not be submerged at all. I am looking forward to this. Last week when it hit 90 we opened up the pool and while everyone else was able to go in all I could do was sit on the ladder and put my feet in. Now I should be able to go swimming with the family. Yippee!

Swallowing Update

On the swallowing front I met today with the ENT doctor that did the initial diagnosis. He scoped me to check on how things were and also to take a look at the swallowing issue. He is also going to take a look at the tests the physical therapist did. So far he seemed to think that dilatation would be the direction to go. Tomorrow when I have the Mic-Key tube installed I am going to ask the GI doctor about his findings on dilatation as well.

I most likely won't have anything done until after I meet with the doctors up at the Roswell Park Cancer Institute in July. They see more of this type of cancer and I am curious as to what their thoughts are on the dilatation procedure.

One thing the ENT doctor did tell me is that many times the procedure needs to be repeated. In some cases the patients are able to do it themselves. Basically you have to stick something down your throat like a sword swallower. Either way anything that can improve the swallowing function would work for me.

A Little Bit Of A Normal Life

2008-06-07T21:30:00.006-04:00

One of the biggest downsides to cancer treatment is that it has prevented me from doing things with the family outside of the house. I essentially missed all of the boys hockey season this year and baseball season so far. (The baseball games are in the evening for the most part and right around 6 o'clock is when I start to head south.)

Well last weekend I was able to take the boys out fishing on Sunday morning for about 1 and a half hours. We went to a place that is only 10 minutes from the house and had a great time. My 11 year old son caught two fish including his first bullhead. He handed both by himself and was suitable proud. My younger son didn't catch anything but did learn how to cast is his first spinning rod. All in it was a short but good time and almost felt like a normal existence again. Admittedly I went home and crashed afterwards but it was still a good time. Everything was catch and release.

My Role In a Sci Fi Show

2008-06-07T21:01:00.003-04:00

So last week was a bit interesting. First I had my regularly scheduled check up with the medical oncologist office and the usual blood test. Nothing really noteworthy came out of that appointment. I met with the nurse practitioner and basically they just reviewed my vitals, what drugs I am on and how I am doing. It lasted all of 20 minutes and ended up with a scheduling another appointment for next month.

Last weeks big fun was the speech therapist meeting for a swallowing evaluation. This was pretty high tech, at least for me. They sit you in a chair that has a specialized x-ray machine. Essentially what it does is show a live x-ray video. It was setup to show my head and throat. It looked like one of those sci fi movies or TV Show where you see a live animated x-ray of a person as they look for some sort of embedded chip. (Hmmm.. I wonder what that thing was that said Big Brother Inc. on it?) The big plus is that the monitor was situated so that I could see it and watch it live as it happened. Definitely a way cool experience.

So with this nifty hi tech tool they had me swallow different puddings of various thickness along with a small, and I mean small, nibble of a turkey sandwich all of which were laced with barium so they would show up on the x-ray. In essence what the test showed was that there is a part of my esophagus that isn't opening when it should. The test wasn't designed to see why it wouldn't open but just what the was stopping things from going down. From the test it appeared that liquids could make it through the part of the esophagus that wasn't opening but not solids. They did give me two exercise to do a few times a day. One was an exercise down with a dry swallow that is designed raise a part of the larynx that helps keep liquids from your airway. The other exercise was more of a swallowing technique designed to keep liquids away from the airway. That has been a problem where sometimes a bit of what I swallow goes down the wrong way and causes a coughing fit. So far it appears that this swallowing technique has reduced the number of times that happens.

Another thing that came out of the eval was my question about how they open up the esophagus when it won't happen. This is typically handled by the GI doctors and it is caused Esophageal Dilation. There are several forms that this occurs in but in essence they thread a tube down your throat and then inflate a balloon to open up that area. The idea is that there are strictures that are preventing that part of the esophagus from opening. I did some research and this can be a side effect from getting radiation treatment of your throat. On my way out I stopped by the radiation suite and asked the nurse there about it. They have had one patient that had this procedure done. The first time it lasted 6-7 months. They had to do it a second time and there was some bleeding so they stopped. She did say that the person who had the procedure done was much older than I am and I may not experience the same thing.

This bit of research comes at a good time. The ENT doctors office called at the end of the week to schedule a follow up appointment for the 19th of June. I am also going to meet with the GI doctor in the next week or two and plan to ask them about the procedure as well. Lastly I head up to Roswell for an eval in the week after the 4th of July. That will let me get a few different opinions on the procedure and then discuss it at Roswell. I have done some research and what I have found out so far is that the procedure is generally considered safe. The success rate depends upon the skill of the person performing the procedure. This is a case where I will ask each group I talk to how many of these procedures they have done and what the success / failure rate has been.

Outside of that nothing is on tap for this week. This weekend I have been having some stomach issues. I don't know if its from another bug I picked up or from trying to many different types of drinks to swallow. So far I have determined that ice water is not a good idea at this time no matter how good it feels going down. My stomach just isn't used to something that cold. Also the sports drink and grape juice seem to be a bit too acidic. For now I have throttled back my attempts to mix it up and have been just keeping to water at room temperature. (OK, I did have about 4-6 ounces of a chocolate milkshake left over from one I made for one of the kids. That did go down OK.) :-)

CT Scan is Negative... and That Is Good!

2008-05-28T19:59:00.005-04:00

I met with the radiation oncologist today to go over the CT Scan from last week and it came back negative. In this case negative is good. The lymph node the were tracking shrunk some more and there doesn't appear to be any signs of the cancer remaining. Of course the definitive test is a PET scan and I will probably have one of those some time this summer but at this point everything is looking good.

Of course it wouldn't be a visit to the radiation oncologist office without pulling out the scope and checking things out through my nose. This time it went easier than the last time. The CT Scan was for the neck area. With the scope the doctor checked out the nasalpharynex area where the main tumor was. As with the CT Scan there is no sign of the tumor. Yippee!!

Next he checked out the throat area. It is still red and swollen. The esophagus has narrowed. Some of that could be due to the lack of use and some from the treatment. We discussed my attempts at swallowing and what steps to take next.

Right now the swallowing has gotten a bit easier but is still far from easy. Basically it is still liquids or things that turn into liquids only. Any solids won't go down no matter how small and cause problems. I found that out today when I tried some shrimp bisque that had microscopic pieces of shrimp in it. It was a problem until I ran it through a strainer. Then there wasn't any problems. Another oddity is that food with fat in it goes down much easier than water. I had read this was the case and the doctor confirmed it. Another strange thing is that I decided to live life on the edge and try a bit of root beer today (what can I say, it was calling to me at the grocery store.) and that wasn't a problem. It may be the carbonation. Keep in mind all of this is done via small sips and a total of 2 ounces at a time.

After a week of my home brew swallowing therapy I can say that things have improved in areas that I hadn't thought about. For the past 6-7 months there hasn't been any liquid going down my throat and now I realize that helped contribute the the thick mucus that was plaguing my throat and nasal passages. (I have also learned through all of this how much your nose, mouth, throat are all connected.) Just by consuming the liquids that I have in the last few weeks everything has loosened up quite a bit. This has reduced the congestion and discomfort in my throat and made things like sleeping easier. It took a few days to have a noticeable impact but it has helped.

Next week I meet with the speech therapist and I hope to get some guidance on how to improve swallowing. I realize that I am not going to just jump in and start eating fried chicken (though some Seneca Farms fried chicken sounds really good right about now) but I do think there should be some sort of progression to slowly introduce semi solid foods. One thing the radiation oncologist suggested is to try egg custard. I may modify that and make some flan tomorrow. Home made flan tends to be a bit loose and could go down well but also have some characteristics of a solid. It also tastes pretty good and who knows, after that I could try creme brulee. Hey if this works out I could get used to this type of swallowing therapy. It wouldn't be too bad if I had to eat flan and creme brulee on a regular basis as part of my recovery. :-)

What's Up Next With The Recovery Plan

I am being patient with the recovery but do want to get started on a defined plan with goals to work towards. Just hanging out waiting for things to recover isn't really my style and I don't think its the best course of action. The doctor today did give me several exercises to start on that are designed to stretch the neck muscles and help me open my jaw wider. He even game me a stack of tongue depressors to use as a tool to help. I am hoping that the speech therapist will be able to provide an action plan to help move forward with the swallowing.

The doctor also gave me some samples to try to help with dry mouth. At this point I have some dry mouth. It manifests itself when I am talking and trying to eat. I seem to generate enough saliva to avoid dry mouth during normal activities and at night it isn't that bad. I do carry a spray bottle with me to spritz my mouth when talking for any length of time. Over time this should improve a bit but I have accepted that I will most likely have some permanent dry mouth. All that means is that I most likely won't be munching on saltines by themselves but that's OK because I was never much of a totally dry snack person. (I will miss some things like popcorn but I can live with that.)

One last thing the doctor today did was give me a prescription for the thrush infection. I am currently using miracle mouthwash but he feels based on what he saw with the scope that the miracle mouthwash may not be reaching far enough back in my throat to deal with the infection. This is a drug I have had before and it seems to work well. Getting rid of the thrush infection should also help as well.

On the physical therapy side I am continuing to use the Wii Fit and that is working out very well. My goal at this point is to focus primarily on the legs and balance exercises with a mix of the balance games and some basic yoga. In another week or so I will start to add in some of the strength exercises for the legs and the arm exercises. After a week of using the Wii Fit I have noticed a significant improvement in my legs. The Wii Fit isn't a silver bullet for solving everyone's exercise problems but in my case it provides a great way to slowly start to ease into exercising again at a pace I am comfortable with. I also think that even after I get by my cancer recovery phase it will still be an integral part of my exercise training. In another post later on I will provide a more detailed review of how it worked out for my recovery. At this point I would recommend it to any cancer patient that is looking for a way to get back into exercising.

Whats Up This Week

2008-05-27T00:33:00.002-04:00

On Wednesday I get the results of the last MRI Scan. As always I am a bit apprehensive but don't think there should be any bad news. I think they are going to use the scope again to check things out and I want to ask them about what is blocking my throat.

On the swallowing front I can swallow ice cream and soups a teaspoon at at time. I have also tried this ice cream called Dibbs that is essentially small bite sized chunks of ice cream covered in chocolate. These I eat in very small quantities. Its better than ice cream because it forces me to chew it a bit but still melts completely. This is getting my jaw muscles working. The first time it was hard to even open my mouth. Keep in mind that it has been 6 months since I had to chew anything. One interesting thing I have noticed is that swallowing thicker soups like cream of mushroom is easier than thinner liquids like water. I still can't consume anything solid but just being able to get down a few spoonfuls of soup at a time is progress. The way I am approaching this is the same way I am approaching my physical rehabilitation. Take it slow one step at a time. With swallowing the goal is to just use those muscles in some manner a few times a day. It isn't a lot of fun at this point but I think it is a necessary step to go through.

On the physical side I don't think I have talked about this much but part of the result of 6 months of inactivity and the weight loss is that my muscles, in particular my leg muscles, have really diminished. With my legs it was at the point where just standing up from a kneeling position was difficult as was climbing stairs. This week I started doing some training with a Wii Fit. I have only been using it for a few days but I can say this is just what I needed to get started. The balance exercises actually do work your leg muscles and in my case it allows me to do a little or as much as I can handle at the time.

One of the things that kept me from starting other exercises for my legs is that most of them involve some sort of motions like knee bends and such that I just couldn't do. With the Wii Fit and the balance exercises and games there are activities that I can do that benefit the leg muscles without worrying about starting something like knee bends that I can't finish. I have already noticed some positive results just after a few days of using it. Right now I am doing 20 - 25 minutes a day. At first I just did the games to get my legs used to do any type of activity. The games may seem simple but after 20 minutes you do start to break a sweat. In the last two days I added in some of the most basic yoga poses. One, the warrior I could do OK. Another, the tree I think its called, would have been a good candidate for America's Funniest Home Videos. You have to stand on one leg and needless to say I wasn't able to hold that pose in any type of balance position at all. One of the nice things about the way Wii Fit works is that you can choose the activities you do. So for most of the workout I can keep focused on the simple exercises that I can do but I am able to add in one or two that require more effort every now and then to see how I do.

After this week I have a few more appointments. I meet with the medical oncologist office for a status check and then with the speech therapist for an evaluation later in the week. The radiation oncologist office was able to get that appointment moved up a week. I will post more information on how those appointments went next week.

Update To The Recovery Food List

2008-05-23T22:59:00.004-04:00

As part of my taking charge of my recovery I decided to start with some basic clear broth soup to see how that would work. In the last week I determined I can swallow about 2 teaspoons at a time. I figured that out because that is the amount I need to take of the Miracle Mouthwash for the Thrush infection.

I had been trying to sip some flavored water but the combination of sucking on the straw and swallowing seemed to be a bit difficult. So I thought what if I used a spoon. And of course what do you eat with a spoon, soup. That led me to today. I ordered up a clear broth soup with mushrooms from a local sushi place that I like and decided to try to see if I could eat a spoonful or two. In the end I put 4 ounces in a separate bowl and eating it one teaspoon full at a time I was able to consume all 4 ounces. Yippee! 4 ounces isn't a lot but it is a start. Also I am taking this slowly. My stomach has known nothing but the feeding formula for the last 6 months or so and even if everything else was working properly, and it is not, my stomach would still need to adjust. However having said that I didn't have much of a problem consuming the soup a spoon full at a time. The plan for the short term is going to be to try to eat 4 ounces of clear or broth based soup a day for the next few days and see how that goes.

As I try new soups out I will add them to the recovery food list. Any items highlighted in yellow are items that I have tried. Hopefully the list will start to grow over the next few weeks.

Update on what is coming up next...

2008-05-22T00:03:00.003-04:00

The CT Scan went well today. In the past when I had these at the hospital they were done by the people in the radiation department so I stopped in there first. It was great to talk to the people there again. I hadn't seen them in awhile after seeing them for 7 weeks straight. So we chatted for a bit and I mentioned that we should be the CT scan started. That's when I found out that because it was a diagnostic scan and not one for treatment I was supposed to be over in the main hospital. Oops. Oh well, fortunately that was only a two minute walk away and the nurse escorted me over.

One result of talking to the radiation folk is that I asked when they called to confirm the CT scan about physical therapy. They setup of an appointment to be evaluated in June by the speech therapist. Unfortunately its not until June 10th though they are going to see if they can get it moved up a bit. I am looking forward to getting the opinion from the physical therapist. My view is that there are three types of things I can do to affect my swallowing. I could do things that help the situation, have not impact or make it worse. Obviously I don't want to do the latter so working with the speech therapist should help let me know what I should or should not be doing. Also I should be able to get some reasonable expectations. At this point I am just looking to be able to consume liquids. I could get by quite well on soups and smoothies/ milk shakes. No problem there. I am also convinced that there are probably things I could be doing to help the situation along. Its been over 5 months since I last really used my throat for eating and that length of inactivity is bound to require some work to help restore swallowing. Just waiting and seeing doesn't seem like an option to me at this point.

So next week on Wednesday I get the results of the CT Scan. I am a bit apprehensive as I am before all of these tests. I have no reason to think that anything will show up on there but it still causes some apprehension. The week after that I go into to meet with the medical oncologist for a regular checkup. Then the week after that is the eval for physical therapy. (Hopefully that can be moved up a bit.)

On the swallowing front I did make some progress in the last week before the 24 hour hurricanes hit. I seem to be able to swallow, with difficulty, 2 teaspoons at a time. That is good because that is what the miracle mouthwash amount is. I stopped taking that during the whole 24 hour episode and the few days recovering from that. Now I need to start that up again. I also tried out some sugar free candy. That was interesting because it did demonstrate that I could take something that was a solid and chew it up enough in a small enough quantity and swallow it with water. It was a sugar free Stoffers coconut candy covered with chocolate. I literally nibbled at it. I also tried a small, and I mean small, strip of ham and was able to get that down in nibble size bites with water. The plus side of all this is that I could taste the ham fine and the candy fine. It wasn't satisfying at all because I had to work at chewing the food up and drink water to barely choke it down but still it was progress. That along with the vanilla ice cream I tried last week leads me to believe that my taste buds seem to have come through OK. That is good news. I have notice that my jaw range of motion is reduced. This is a potential side effect though I have read that though physical therapy the range can be improved somewhat. That will make chewing a bit easier.

That just leaves the swallowing problem as the main limitation. Hopefully there will be some physical therapy options that will help improve the situation at least to the point where liquids will go down fine.

Weekend Update - A 2 Hurricane Affair

2008-05-18T13:53:00.002-04:00

Something new developed this weekend. Apparently I picked up a 24 hour stomach bug that decided to test my ability to vomit on the hour every hour. :-) Starting Friday night until Saturday was an interesting experience to say the least. Fortunately my oncologist was the on call doctor for the weekend. At first I thought maybe it was something to do with my swallowing attempts that was causing the problem. So I kept trying to keep the feedings going, big mistake there! I talked to the doctor on Saturday and he had me stop the feedings for several hours and then only start back with a limited amount. Sure enough by Saturday night the stomach pains had subsided and on Sunday morning I was able to keep the feedings down.

While not a fun time at all I was glad to know that my swallowing exercises did not cause the problem. Today I am still recovering from the 24 hours of fun but I have introduced something else into the swallowing exercises. I took a little bit of some strawberry kiwi sports drink that we had and used that to help with the swallowing. I only take in 1-2 teaspoons at a time but having a bit of flavor does help make the effort worth while. I am also going to start to try to use ice chips as well. Just to keep something cold and wet in my mouth to help with the swallowing.

I also tried out one of the sugar free candies today. This did point out that I most likely will end up with some permanent dry mouth as a result of the treatments. I was able to suck on the candy as recommended but it didn't help out much with saliva production. I had to add in some water now and then to make it work.

Whats Up Next Week...

2008-05-16T16:44:00.002-04:00

Next week I have another MRI to check on how things are going. This one is just of the neck area. I won't get the results until the following week. (Bummers on that one. They really need to work on developing instant MRI results.)

Changing Tactics

This last week I took a change in tactics that I think is helping make some forward progress. Things seemed to have stagnated and I wasn't scheduled for another appointment with the doctors until June. I called Roswell to schedule a follow up appointment with them. The only options I had when I called was for an appointment in July. :-( I went ahead and made that appointment but I also talked to the doctors nurse about the swallowing problem. One thing she mentioned was to keep trying to swallow something and that in some cases they end up prescribing physical therapy. After I got off the phone a light bulb went off in my head. Physical therapy seemed to make quite a bit of sense. If you break a leg and are in a cast for 8 weeks or so you need physical therapy for the muscles that haven't been used for 8 weeks. When the cast comes off you don't just start running around. I remember how it was with our youngest son when he broke his femur and was in two casts for a total of around 12 weeks. It took several weeks of physical therapy for him to start walking without a walker. At first it was painful and slow but he wasn't going to get any better without going through those phases.

So this week I decided to apply the same concept to swallowing keeping mind that my throat is still healing so I couldn't expect too much or for this to go too quickly. At the same time I think I developed a Thrush infection again. This is an infection in the back of the throat and mouth. The standard treatment is something called Miracle Mouthwash that is a blend of drugs unique to each practice. (Yep, old time medicine at its best.) The last time I had this was near the beginning in November and at the time I wasn't able to use the Miracle Mouthwash because I couldn't swallow it.

I called the medical oncologist office and told them that I thought I had a Thrush infection again and asked if they would call in a prescription for Miracle Mouthwash and they did. So this week I tried three different strategies. First was to use the small spray bottle they gave me at Roswell to spray a small amount of water in my mouth and try to swallow it. At first it was hard. Rather than just try two or three times and then quit when it felt like I was going to throw up I kept at it for a few more attempts. Sometimes it worked, sometimes it didn't. I figured that was just the price I would have to pay. I started the spray bottle prior to getting the Miracle Mouthwash.

The second strategy was to not keep spitting out the mucus / saliva that would accumulate in my mouth but instead try to swallow it. I did this on an intermittent basis along with the spray bottle and had about the same results. Still at least two or three times a day I worked on this strategy. I actually got a little carried away on the first day and took a teaspoon and got a partial spoonful of vanilla ice cream. I was able to slowly lick off the equivalent of about 1 teaspoon of vanilla ice cream. Yippee!!!! Of course I then paid for that later and I learned to keep my intake to fluids.

The first day I just did this a few times during the day. The more I used the spray bottle the easier it got though indigestion started to become a problem. There was another beneficial side effect to this. By running more water down my throat it seemed to loosen up the mucus. The mucus I cough up after working with the spray bottle is much looser and not composed as much of solid chunks. This has me wondering if trying to drink more water will help with the mucus issue at the back of the throat.

The third tactic was using the Miracle Mouthwash. I could have asked for a drug that also works on Thrush infections. This is what I had to do back in November. Instead I thought I would try to see if I could swallow the Miracle Mouthwash (MM). With MM I need to consume 2 teaspoons by swishing it in my mouth and then swallowing it. Up to now I have not been able to swallow any type of meaningful volume so I was a bit apprehensive on trying this. Fortunately it appears that by starting out with the spray bottle a few days prior to trying MM I had paved the way for swallowing the 2 teaspoons. Keep in mind it doesn't go down easy at all but it does go down and stay down. This is definite progress.

What Next?

So where to go next. First I have started to use the spray bottle more during the day. I also try to swallow the mucus / saliva combination in my mouth rather that spit it out. The goal is to keep working those muscles that swallow food. I also want to try to swallow something other than the Miracle Mouthwash in 2 teaspoon increments. I picked up one of those fortified water drinks that are out there in a melon flavor to try. The flavor was important not for the taste but for the acidity. Drinks like Gatorade or Grape Juice are too acidic for my throat at this point. If I am able to swallow this in two teaspoon increments then next week I will up it to three with the goal of working my way up to 6 teaspoons (1 ounce). At that point I would consider liquids a success.

The other tactic is to start sucking on sugar free hard candy to help promote the production of saliva.

I have done some research on physical therapy for swallowing and wasn't able to find much our there for my level. It all seemed to be aimed at patients that have it far worse than I do. Those recovering from surgery where physical parts of the throat or tongue have been affected. One thing I did gather from what I have read is that repetition is key so I need to do this each and every day to achieve results.

I also need to keep my expectations in check. This is a program that I have come up with and may not produce much in results at all or it may really help move things along. Hopefully by the end of next week we will see some additional progress. Still I feel it is better than just sitting around waiting for things to improve.

On Again Off Again

2008-05-12T06:50:00.002-04:00

Just a quick update. My blood work on Friday came back and the levels for Warfarin were high again so they took me off it for a day and reduced the dose a bit. Apparently it is a trial and error process in getting the right amount dialed in. The downside is that this drug does cause other problems when the level gets too high. Hopefully this time the dose will be at the right level. I get tested on it again at the end of this week.

Not much to update at this point

2008-05-09T03:15:00.003-04:00

I hadn't planned on taking this long to post an update but I was hoping that my next update would be that I was swallowing again. At this point that hasn't happened but I do feel that my throat is making progress. The mucus problem is still there but it is different now than it was two weeks ago. Two weeks ago I was coughing up a larger volume of mucus and it was denser. Now the volume is less and it isn't as thick. Still all I can do at this point is choke down a very small sip of water. Somewhere along the lines of a teaspoon sized sip. If I try to take anywhere near a normal sip of water it comes back up faster than it went down. Fortunately I am aware of this potential and have things setup to handle it. :-)

The other two major side effects that I am experiencing are tiredness and a lack of some strength particularly in my legs. The tiredness is from a lack of energy. I have found out that while I can spend a day doing somewhat normal activities the next day I am going to end up sleeping most of the day wiped out from the previous days activities. I am not talking about doing anything strenuous just not spending the entire day lying around. From what I have read and what the doctors have told me the energy level is going to take some time to come back. Part of it is due to being inactive for the last 7 months and part of it, perhaps the majority, is from damage due to the treatments. This also applies to the reduction of strength. In the last 7 months I have lost around 50 pounds. A lot of that was muscle mass from lack of use. To help combat this I have started doing some light exercises each day. This is one area where I am trying to be careful about not over doing it. I have to admit that I have a tendency to want to rush my recovery but there is only so far that this can be pushed.

One of the first things that go through your mind when you complete treatments is that once the chemicals are out of your system your body will go back to normal quickly. Unfortunately that is not the way cancer treatments work. The damage they do to your body can take a long time to heal. There are things that you can do to help the process along but at the same time I need to be realistic about what my capabilities are.

There are two barometers that I use to gauge my progress. The first is the status of my throat. At this point it is still very sore and I can tell when it approaches the time to change the pain medicine patch. Along those lines are the mucus issue. I am told that part of the mucus issue is related to the throat. The mucus is designed to help protect the parts of the throat that are still healing. Once again I can tell when the ear patch that I wear is getting close to needing to be changed as the mucus flow increases greatly. The second indication that I use is my facial hair. At this point it is growing a bit faster than it was before but I can still go weeks without having to shave. This is also an area where there has been some change so I do know that progress is being made just slowly.

Other than that there isn't much more to report. I did have one interesting thing happen regarding the blood clot medicine. Apparently they were supposed to be monitoring with blood test weekly but somewhere that didn't get scheduled or communicated. When I went in for a checkup two weeks ago at the end of the appointment the doctor noticed that a particular test for monitoring the blood clot medicine hadn't been run in awhile so he had me give another sample after the appointment. I have to admit that I wasn't overly thrilled as I had already given a sample right before the appointment. It was at the end of the day and I had been kept waiting for an hour for the appointment and just wanted to get home at that point. They initially asked me to drop the new sample off at the hospital for testing. Apparently the courier had already left of the day. I said I wasn't comfortable with that and they ended up handling it. I also was starting to tire out from the day. So I got poked again (did I mention that one thing out of all this is that I have been cured of my needle phobia?) and gave another sample and then went home. Based on the results I am glad I did agree to the test even though at the time I wasn't too thrilled about it.

I ended up crashing early that evening but the doctor called around 8:00 and told Sue that I should stop taking the blood clot medicine and wanted to know if I had already taken it for that day. I was asleep and Sue didn't want to wake me so she put a large note on my computer monitor telling me to stop taking the medicine. That is where I normally stage my drugs to get ready to take them so I did see the note when I woke up and fortunately I hadn't already taken the medicine. Apparently there was some test that showed the level of the drug was too high in my blood or something along those lines. They wanted me to stop taking the medicine until that level came down. We figured it was serious when the oncologist calls you at home at 8:00 at night and kept asking Sue if I had already taken that days dose.

One thing to note about this drug is that the instructions are very specific in how you take it. You need to take it the same time each day and if you miss a dose you are not to double up on the dose. If you do accidentally take a double dose then they have you call your doctor immediately. That gave us some indication that they were serious about my not taking anymore of the medicine until they could test my blood again. I also looked at the side effects from taking too much of the drug, Wayfarin, and some of those side effects were the same ones that I was experiencing at that time during week three of the chemo treatment. Once I stopped taking the drug I did start to feel better.

The next week they tested me again and the levels were down so they started me on the drug again only this time they are monitoring me weekly. I went into the doctors office for another test that same week and things came back normal. At this point they have set up a standing order for tests at the convenient care facility 5 minutes from home. All I have to do is just show up and say I am there to be tested and the lab will draw the blood and perform the test. I don't have to schedule an appointment in advance I just show up. This makes it very convenient for myself. Generally the convenient care facility is pretty quick with running blood tests and I am in and out of there in about 10 minutes. They also have public WiFi access so I can bring my iPod Touch with me and surf the Internet or check out YouTube while waiting.

That's all there is to report at this point in time. The plan is to update once a week as things progress unless there is a break through in eating then that will get reported right away.

Recovery Update: The ups and downs

2008-04-21T20:43:00.002-04:00

Its the third week since the end of the last chemo treatment. After this week I enter uncharted territory. Things have settled down at this point. My voice is slowly coming back but I can talk in sentences now. Sometimes its easier than others. A lot of that depends on the mucus situation and how my throat is feeling.

I meet with the medical oncologist this week for my normal post chemo check up. I also hope to learn what the testing schedule is going to be going forward. At this point I have completed all of the treatments (note to self: remember to have champagne as soon as able to. :-)) so what remains is testing to see if there are any remnants of the cancer left and then to keep checking to see if it has come back. I have discussed this with the doctor in the past and with the type of cancer I had if we got all of it then most likely it will not return. This appears to be due to the nature of the type of cancer, that it was caused by a virus and not some type of genetic or environmental type cause. At least that is my understanding. Of course it only takes a few rogue cancer cells that remain behind the scenes that haven't been killed to cause the cancer to recur. That is part of the reason for the follow up chemo treatments that were oh so much fun. They were designed to finish off any cancer cells that the initial chemo and radiation didn't get.

The other big topic of discussion for the next appointment is recovery. My first interest is of course my throat. It is still sore and I do need to have the fentanal patch to keep it under control. The question is what, if anything, can I do about the swallowing. It may be nothing and it will just take time but I still plan to ask if there is anything that I can do. My goal is to take it slow. I don't plan to start out with a garbage plate or anything, as tasty as that may be. My initial goal is to just start to consume liquids such as smoothies and such. Part or the reason for this is to help increase my calorie intake. Using the feeding tube and the new "nutrition in a can" has helped maintain the weight but I really won't be able to start to put weight back on until I can consume calories on a more regular basis without the hassle of the tube. Its not that I am looking to pack on the pounds right away (Though there are at least 10 pounds designated for junk food weight gain. :-)) but being able to consume more calories will help increase my energy level. Right now that is the other big side effect that seems to vary by the day. Some days my energy level is fine others it is non existent. Some of that is related to the effects of the chemo treatments and will take awhile to come back but I think part of it is due to the amount of calories I take in. Either way the ability to enjoy a strawberry milkshake is my first goal as far as food intake goes.

Outside of that I have a few other questions regarding some of the side effects that I am experiencing and what to expect from them. They are nothing major but just something I am curious about. One of the side effects is the occasional ringing in the ears. That seems to come and go so hopefully it will eventually go away. The other side effect is some loss of coordination in my hands. At times there isn't any problems but then other times there are tremors in my finger tips that make doing some things awkward. Once again this seems to come and go with out any pattern so I am curious as to what the doctors thoughts are on this.

Now that I am finished with the treatments it is also time to go back up to Roswell to have them check me out. They had requested a follow up visit during the second round of chemo treatments but there was no way I was able to make the trip to Buffalo then. Now that the treatments are done the trip shouldn't be a problem and it will be good to get their opinion on how the treatment went and their advice on the side effects and what happens going forward.

Storm Clouds Are Clearing

2008-04-15T20:38:00.002-04:00

It seems that the storm clouds from the last chemo treatment are now clearing. The weekend was a bit of a rough ride culminating on Monday. For some reason the mouth sores seemed to be worse this time around and that impacts the other symptoms and seems to magnify their effects. Now the mouth sores seemed to have peaked and are in decline so that means I am through the worst of it and on the upward trend. Yippee!

My voice is still out at this point but that should start to come back towards the end of the week. My big goal now is getting to the point where I can eat real food. Next week I meet with the oncologist for a check up and at that point I plan to get a referral to the ENT doctor to get his take on what we can do to move the process along. I do need to realistic and not push this too hard. I have read accounts of cancer patients that end up pushing themselves too fast during recovery without good results. I also need to set realistic expectations.

I have two basic side effects right now that are having an impact on me. The first of course is the swallowing problem. The second is my energy level and general fatigue. This is the symptom that I think people may tend to overdue. Its been over 6 months since I have done any real physical activity and it shows. It took 6 months of no activity to get to this point (not to mention all the wonderful drug and radiation treatments. :-)) its going to take some time to get back to where I was. That doesn't mean I expect to be out of it for 6 months I just have to be realistic and not expect to reach the same activity level I was at before treatment in just a month or two. It may take a bit longer than that. Fortunately now is the time for outdoor activities and there are lots of small things that can be done outdoors in moderation. I don't need to go to the mall to get in a walk.

Final Chemo Update: Downgraded to a Tropical Storm

2008-04-09T19:35:00.002-04:00

This last chemo treatment is keeping to the same pattern as the previous two only a bit more intense on two fronts. The first is the mouth and throat sores. For some reason it seems as those are a bit more intense this time around. The pain meds are just able to keep up with those as long as I keep on the meds schedule. The other side effect is the excess mucus. That seems to be more but of a different type. Less of the solid mucus and more liquid. I had to remember to jump back in with all of the meds recommended to help with the mucus. As long as I keep up on those the side effects are manageable.

Fortunately if this holds true to form by the end of this weekend these side effects will start to fade and I will be on a upward recovery trajectory going forward. Have I mentioned how good it feels to not have any more treatments on my schedule? By this time next week I should be on the path to recovery.

Out Like a Lion: A 3 Hurricane Night

2008-04-07T08:20:00.005-04:00

Not to be out done the last round of chemo decided to go out the same way the first round came in.. with a 3 hurricane evening. (For a description of what that is check out this post. A three hurricane evening For the most part the weekend was like previous weekends after the PIC line was pulled. On Sunday though my energy level seemed to be higher and I thought that maybe this time around things would be a bit lighter. From what I have been told its hard to predict how people react to multiple chemo treatments. Sometimes the reactions are lighter, sometimes not. I was hoping for the lighter part of course. :-)

In the early evening I did feel the tell tale 5 second warning signs that I needed to get back to my room. Having been through this a few times I made it back with out a problem. (Its amazing the skills you acquire during cancer treatment. :-))

(Warning gross stuff coming up.) Typically these incidents are ones that want to clearing the mucus that gets lodged in the back of my throat that causes the swallowing problems. This is mucus that would make a severe head cold proud. :-) Normally these get cleared by just coughing it up but once in awhile, after chemo treatments for example, my body decides that more extreme measures are required. Normally any ill feelings pass a few minutes afterwards and I am back up an operational. This time around however I became dead tired and literally fell asleep right where I was. Big time rookie mistake. One thing I have learned throughout all of this is don't mess with the meds schedule. Unfortunately this ended up with my missing a few meds.

For those that don't know my meds schedule can be broken down into three categories. There are those that last only 3 hours, pain meds for the most part. Then there are those that are once a day like the meds for the blood clot and then those that are every 8-12 hours. These typically are the ones that control nausea and symptoms along those lines. Missing any isn't really a good thing but the ones that are every 8-12 hours are the ones that like to remind you why you shouldn't miss them. :-). I have learned that even when I am feeling particularly good on a day I should still try to adhere to the meds schedule by the minute. Pushing it even an hour on a good day isn't a good idea. Like I said, rookie mistake.

So after sleeping a few hours I woke up to once again with a bang. This time from missing the appropriate meds. With these last three chemo treatments Sunday nights and Mondays always seemed to be the worst times and this time around was proving to be the same thing. So at this point I am feeling out of it from the general chemo effects and missing the meds schedule along with a feeding. (The feedings also help keep the symptoms under control. Not having an empty stomach plays a part in controlling nausea as well.)

I won't bore you with the rest of the details but lets just say it took awhile to get my body back on the meds / feeding schedule and have it take effect. Fortunately by the early morning I was able to get back onto the "normal" course that happens after chemo treatment and back to the usual feelings. On the plus side of all this if history is any indicator in a few days I should start trending upward again. Right now I have all the usual symptoms, tired, fatigue, mouth sores and can't talk. This should all start to get better by mid week and hopefully by the weekend I will just keep going on the upward trajectory.

With the last round of chemo it did appear that I recovered faster than the previous round so hopefully this round will bring more of the same. The added plus this time around is that there isn't any additional chemo treatments to knock me back.

The Final Assault Is Over!

2008-04-04T20:58:00.002-04:00

The visiting nurse came down today and removed the PIC line. This signifies the end of the assault! Yippee! Unfortunately I can't celebrate with champagne but I can add that to my recovery food list. (Feel free to have a glass for me if you want to. :-)) Just to recap I have had 35 radiation treatments and 6 chemo treatments divided into two sections. All in there were a few delays in the chemo due to the side effects but nothing that significant. The assault on the cancer is over and now its time for recovery. Yippee!

I waited to report on this weeks chemo because it always seems that right after I report nothing major is going on something crops up. This week was probably the best of the first weeks for the final three chemo treatments. (For those that may not be aware the first 3 chemo treatments were getting a single large dose of Cisplatin in a day every three weeks running in parallel with the radiation treatment. The last three treatments were a lower dose of Cisplatin on one day followed up with a 5FU infusion that was administered by an IV pump at home over the course of 4 days. That is the treatment that just ended.) Fatigue increased throughout the week and the mouth sores started to appear at the end of the week. (I think I could set my watch by the way those things show up on time. :-))

I am anticipating that the same trend as the previous two at home treatments will continue with this one where things get a bit worse for the next 4-5 days or so and then I start to come back out of it. Already my voice, just today, has gone from being able to say a sentence or two to not talking at all. Fortunately having been through this twice already I have some idea what to expect and based on last time have the proper medication levels set to help offset the side effects.

The difference this time around is that once I do bottom out its all recovery from that point going forward. It has been odd I think for people to see the whiplash speed that things change. As I get farther away from a chemo treatment I start to improve, can talk a bit and the energy level starts to get better. Then once the chemo starts its like going back to the beginning. One day I could talk the next one I can't. As I said a sentence or two ago the nice thing this time around is that once I start on the recovery part there aren't any more treatments to set me back. I should be getting better day by day. As for how long that is going to take is any ones guess. It could be two months and I am eating again or it could be 6 or longer. There really isn't any way to tell. One thing I have noticed is that the week before chemo treatments, the third week after a treatment ended, the recovery seemed to pick up the pace a bit. Of course then another chemo treatment was administered and that put me back to the beginning. It will be interesting to see where I am at 4 weeks from now.

The Final Assault: Follow Up Chemo No. 3

2008-03-31T09:25:00.007-04:00

I am blogging from on location at the hospital this morning as I await the start of the final chemo. This is it. The troops are all staged and ready for the final door to door sweep for any stray cancer cells. The PIC line is in and they just hooked up the IV pump. What happens is the PIC line gets installed then an XRAY is taken to make sure it ended up in the right place. Once the doctor evaluates the XRAY and gives the green light to start the IV pump is hooked up and the process is started.

One plus with this time is that I have been feeling a bit better over the weekend and taking in more fluids. This is good because they can't start giving me the actual chemo drugs until I "output" a certain volume. For the past few chemo sessions they had to give me extra drugs to "encourage" activity to get the output that was needed. Sometimes that meant I was just getting fluids through the IV pump until the afternoon. Today I have already hit the volume requirement so hopefully I will be done early. Yippee!

CT Scan Update

I realized that I didn't put a post about the follow up visit for the CT Scan. Overall the CT Scan came back good. This was a scan just of the neck area. There is still one small mass there the largest tumor was in the lymph nodes on the side of my neck. It has shrunk about 75% by volume from the last CT Scan. I met with the radiation oncologist first that morning and he said that it could be scar tissue, dead cancer cells or lingering cancer cells. I wasn't so keen on the last answer and asked what the options were. They will keep a watch on that area but it is steadily shrinking. Another CT Scan is schedule for about 2 months out and they will look at it then.

In the afternoon I met with the medical oncologist and asked him about the CT Scan results. He felt that there was nothing to worry about. With the size and amount of tumors that I had in my neck he did not feel the lymph nodes would go back completely to the same shapes that they were prior to the cancer. That this was most likely just residual tissue from the dead cancer cells and there may always be some small change there. In about 3-4 months they will schedule a PET scan.
The PET scan is the gold standard as far as tests go to detect cancer cells. Other than that everything else is looking good, except for the swallowing issue. :-(

The radiation oncologist used a scope to check out the nasal area and the throat. He confirmed that the main tumor in the nasopharynix is all gone. He also confirmed that the back of my throat is still coated with lots of the thick green mucus. This is what makes swallowing a problem. There really isn't much that can be done about this except wait. For the last few days I have noticed that I am coughing up less mucus that I was before but it is more than enough to cause me not to be able to eat yet. This last round of chemo of course will set that back even farther but only for a few weeks. After that its onto recovery time knowing that there are no more treatments. Yippee! While I am not looking forward to the next 7-10 days or so it is nice to know that so far the treatment plan has been a success and that this the last treatment. Once I get by the next two weeks I should be on a steady course of recovery without the spectre of being set back by additional treatments lingering in the air.

New Addition To The Recovery Food List

I have discovered YouTube and Expert Village as great sources of how to videos. You can find out more about cooking techniques from some of the videos there than on the Food Network. While poking around I did find a video from the food network that covered something called the garbage plate. For those of you not aware of all that upstate NY has to offer in culinary delights I am going to attempt to link to it here. This is a great food item and it ranks right up there with sausage gravy and biscuits. My favorite garbage plate is the cheese burger plate with an extra cheese burger. Here is the link.

Garbage Plate Video

If you get a chance and are in the Rochester area there are a few places that serve this marvolous delicacy. It is worth the drive. And if anyone has the recipe for the ground beef type of hot sauce they put on hot dogs and the garbage plate let me know. I think that is all I need to be able to make one at home. Now that is motivation to get eating again!

CT Scan Update: Well Maybe Not...

2008-03-20T20:47:00.005-04:00

I was supposed to go see the radiation oncologist today for a check up. They were going to use the scope to check things out (have I mentioned how much fun that is?) and go over the CT Scan I had on Monday. Well... things didn't quite work out. I showed up at 2:00 for the appointment and the doctor wasn't there. Apparently my appointment was for 1:00, not 2:00. Normally I am pretty good about keeping a log of these things so I was trying to figure out how I made the mistake. What happened is that when they called to reschedule appointment two weeks ago I answered the phone, first mistake, and it was right about at the end of the at home chemo treatment. I vaguely remember something about the timing of the appointment and them mentioning the doctor had to leave at a certain time. I think what happened is that I wrote down 2:00, the time the doctor had to leave, and not 1:00 the appointment time. Now the appointment is scheduled for next Wednesday. While I am a bit disappointed in not getting the CT Scan results I am OK with having the scope delayed a bit. This is the test where they start a probe up my nose and work it back to the throat. All of the areas that are still tender. The last time they tried to do this they couldn't make all the way back there. My view is having another week to heal up before the test works for me. (Really... its a fun test... everyone should have one. ) :-)

All Dressed Up And Nowhere To Go

So here I am, on the other side of town and nowhere to go. For those of you not familiar with Ithaca the other side of town is all of 10 minutes away. I had a need to pick up a item at Lowes and decided to head over there. It was mid afternoon so there wouldn't be a lot of people around and generally I am good for 2-3 hours mid afternoon these days so I figured why not. As expected the place was pretty much empty. I picked up the one item I needed and then proceeded to wander aimlessly around the isles just looking at things for awhile. Its been around 6 months since I have been in a hardware store. For those of you that don't know one of my hobbies is wood working. I also like to do home improvement projects. Going 6 months without stepping into Home Depot or Lowes is like being in exile. It took a lot of restraint not to want to buy half the stuff in the store. I did pick up one or two more small item. What I did do was just wander around to get some ideas for things I may do this summer.

Most of the time when I go to a store its with the intent to get specific items. Its normally on the weekend and I just want to get in and out of the store. Its not often that I just take a look around to see what else they have. For example Lowes has a much better selection of wood glues that I would have thought. (Yep... just look at all the useful information you get from this blog) And of course I did have to take a few minutes to browse through the tool section.

So while I may have made a mistake with the doctors appointment the afternoon wasn't a total loss. I did get to go on a field trip to a hardware store. That was definitely a worthwhile way to spend the afternoon.

I probably will not do another update until next week after I get the CT Scan results.

Chemo Update: Things are going well and a new CT Scan

2008-03-18T10:22:00.003-04:00

Things are still going well. My voice is slowly getting better and I can hold a one or two sentence conversation now. My family appreciates that. Without talking I would try to communicate with mono syllable utterances or by pointing. Not only would I be the worlds worst charades player I think at times if I was video taped it could have been a winning entry for America's funniest home video's.

One change is that I am transitioning to a new feeding supplier and type of supply. I was consuming the number of cans of the old stuff per day that I was supposed to but continued to lose weight. I am currently down about 40 pounds. The new supplies should add about an additional 800 calories per day into the mix so hopefully I will level off and even gain a bit a weight. Not too much though. Some of the weight I need to gain back needs to be saved for going to chines es buffets, three chili dog lunches... and so on. The other change in tho feeding supplies is the new stuff is vanilla flavored. For those of you that don't know vanilla is one of my favorite flavors, not that I will be tasting this stuff. The old stuff was more like baby formula. To transition to the new stuff I am adding a can day. My body has been used to the old stuff for the last 4-5 months so I don't want to shock it all at once.

Part of the change I have made is going back to one can at a time feedings. I think this has helped quite a bit with how I am feeling during the day. With two cans at a time the volume was just a bit too much to be comfortable and I would end up having to stay relatively still to avoid setting off any "incidents" The advantage of 2 cans at a time is longer time between feedings. In my case that isn't a problem. The downside to single can feedings is that I have to use the PEG tube 8 times a day just for nutrition and then the additional times that I have to take medicine that doesn't fit into the feeding schedule. There have been days that I have used the PEG tube over 10 times. Its very disruptive because the setup and break down for doing the feedings is a few minutes. All in its 10-15 minutes per feeding.

Yesterday I had another CT scan done. This was planned awhile ago and it just a status check by the radiation oncologist. I see him on Thursday for a check up. The CT Scan was of the throat only. I can't feel any more lumps in my throat but that is what the CT scan is for. (Keep in mind this whole thing started because I thought I had a severe sinus infection. :-))One thing I am going to have to get used to over the next several years is the lag time between having a test done and getting the results back. I have no reason to think anything will show up on the test but occasionally I do have some apprehension as I wait for the results.

Unless something comes up my next post will be after I get the test results on Thursday and then when my last chemo treatment starts at the end of March. Yes... there is indeed an end in site and its coming soon. Yippee!

Chemo Update: Time Helps a Lot

2008-03-13T21:55:00.003-04:00

Its been 5 days since the PICC line was removed and each day things get a bit better. Based on this experience and the last one its the 3-4 days after the 5FU infusion that are the worst. This time was a bit different. On Monday I went in to get a shot to increase my white blood count and have blood tests done. This was day 2 after the PICC line was taken out so I was a bit out of it. The chemo nurses at the doctors office were great and we talked a bit about what was going on. Last time they increase the dose of the anti nausea drug and this time the steroid I take right after chemo was continued for a bit longer. All with positive results.

I explained that the problem on Monday was the 5FU was causing mouth and throat sores and the pain meds barely kept up with it. I also explained that with the mucus issue when I cough it up it would sometimes trigger a gag reflex and stomach acid would come up. Oh... I should have mentioned potential gross part coming up. Oops. :-) Then when the stomach acid hits the sores things really get wild. Of course at this time I wasn't talking again (More on that in a bit) so I had to write it out. That worked out well. In the past I have called in and tried to communicate as best I could with limited conversation or through Sue. Being able to write directly to them in the office worked out for the best. They made two more changes. First they increased one of the pain meds to help with the mouth sores and they put me on a drug that limits stomach acid for acid reflux. Between those two this time around has been better. Even when I have to really work to cough up the mucus (I warned you about the gross stuff) I don't get the stomach acid flowing. That avoids the chain reaction that goes along with it.

Another change I have made is I am currently sleeping reclined in a chair. Not too worry its comfortable and all that. I found that with the mucus level where it is currently at if I am in bed to sleep it tends to pool at the back of the throat even more and I wake up after an hour or two gaging. I still don't sleep more than 1-2 hours at a time but I don't wake up choking either.

One last change I made was the frequency of the feedings. The goal has been 8 cans a day doing two at a time. I still have the goal of 8 cans a day but now I am doing them 1 can at a time. Its more of a hassle with the PEG tube but the benefit is that if I do throw up I am only losing one can of nutrition. Also by feeding more frequently my stomach is empty less. This has an impact on nausea. I am up all hours anyway so doing 8 feedings a day really isn't too big of a hassle and it seems to have also helped with the side effects.

Relating this back to talking last week I was able to actually hold a few minute conversation with one or two people on the telephone. Today I am back to writing notes or if I have to barely uttering one word statements. What happens is I slowly get better after the chemo treatment... right up until the next one starts. Then I go back to the beginning again. I realized this with talking and also used this information to adjust how I dealt with the side effects. For example the farther away I get from the chemo treatments the less mucus I get and I can talk better. When that happens I start to reduce the treatments that I have to slow down the mucus. The reason is that those drugs were starting to cause severe dry mouth while sleeping. (Talk about waking up without a lot of fun. Whew!) What I figured out is that when the next chemo starts I need to go back to the beginning and start taking those drugs again or at least start to introduce them. An example would be the ear patch. About two weeks after the chemo ended I stopped wearing the ear patch. No problem then. However when this round of chemo started and I sensed the mucus building I started using the patch again. Essentially I need to adjust my treatment of the side effects on a regular basis. Until I get by the last chemo treatment my condition will continue to be one where I get a bit better, a bit better and then go back to the end of the line again. Armed with that knowledge I am better able to deal with the side effects when they happen. That has made it easier this time around. Fortunately there is only one more chemo treatment to go. Yippee!!

A Comment On Food..

I don't think I realized how much the swallowing issue was bothering me. I didn't dwell on it but it did bother me occasionally. Now that I think I have a good handle on that I don't think about it much anymore. I actually started to get interested in the cooking shows and such again. Food Channel (AKA the Food Porn Network) has changed a bit and seems to be more into competition or cooking that normally people can't do so that has become less interesting to watch. (Good Eats is still a fun show for the entertainment value) What I have found is that YouTube has lots of "home made" cooking videos that are geared more towards normally people. Yep... that's what I do when I am up late at night and can't sleep... check out cooking videos on YouTube. Sad but true. Seriously though I watched one the other day on making bread. It was about 10 minutes long. It turned out that I saw something similar on the Food Channel awhile ago and I think the YouTube video had more useful how to content than the Food Channel did. If you are interested in cooking there are some good things out there on YouTube. You have to search a bit. There also seem to be quite a few music videos of cooking but there are also some with good explanations.

Some Rambling Thoughts On Eating...

2008-03-09T16:44:00.007-04:00

Afternoons seem to be a bit better for this round of chemo treatment. All of the usual symptoms are present, tingling in the fingers, mouth sores, irritation of the throat and such. What I have found is that when I am like this it is better not to lie down. That causes mucus to pool at the back of the throat and get thick. Then unfortunately my body only seems to have one way to want to get ride of it, coming back up. Not a lot of fun. What I will end up doing for the next few nights is sleeping, when I can sleep, in a chair. Its not the best solution but it beats the alternative.

One thing I have been able to do is surf the Internet so I thought I would try my hand at researching dry mouth again. After months of on again and off again searching today I found some good information that helped ease my mind a bit. As you may know one of my concerns about the long term effects has been eating. For those that know me you know how much I enjoy food. Who else would spend their lunches up in Syracuse doing field research on the downtown hot dog vendors to see who had the best chili dogs. (BTW I don't know the name off the top of my head but its the guy near what use to be called the MONY Towers. Good service, good price and great dogs!) It was a sacrifice but myself and another person visited just about every hot dog vendor within walking distance to gather the research information. Wouldn't you know it the first place turned out to the be best. One other FYI some vendors try to extend the menu by adding things like salt potatoes and other items. They sound good but from practical experience I can tell you that salt potatoes do not lend them selves well to eat as street food. Food that requires eating utensils really doesn't work out so well as street food. But I digress.

Enter A New Term: Dysphagia

My concern was that once I started treatment the suggestions for food all seemed to be things like mashed potatoes with gravy, ice cream Popsicles and such. The problem I had is that in addition to the dry mouth issues I actually had another side effect. I also was developing a condition called Dysphagia. Essentially a swallowing disorder. This was from the chemo and the radiation treatment. It included the reduced saliva but also the swelling in the throat and the sores. The sores right off the bat eliminated anything sweet like ice cream. One that hit the sores it was painful. The mushed food worked out OK at the beginning but at the throat became more swollen it became harder. Thus the need for the PEG tube. While I was glad I had the PEG tube I was also a bit discouraged that I wasn't able to even eat the basic types of food that were recommended. At the time I lumped all of this into being caused by dry mouth. Now that I have researched it some more it was a combination of dry mouth and the swallowing disorder.

As a result I have had my on again off again paranoid views that I may never again enjoy real food. It is generally accepted that I will have some form of dry mouth as a result of the treatments. The damage from the radiation treatment is permanent. Some will come back over time but there will be some loss of saliva. (Note: semi gross part coming up) Your saliva is made up of two parts. The first part is the liquid part and the second part is the white part of the saliva. There are more technical names than that but you get the idea. The liquid part is the first part to get damaged and that did. Having said that I can generate some saliva and when I do test swallow I can, painfully try to swallow that. No additional permanent damage is being done to my saliva glands now so if anything that situation should improve. I think half the drugs I am on have some sort of dry mouth warning on them. Where I have had problems with dry mouth that becomes painful is when trying to stop the mucus flow. Between the ear path (once again where is the Nobel Prize for the crew that came up with that idea?), Sudafed, these eye drops that you put under your tongue and my every changing condition based on where I am at in the chemo treatments I have had situations where I wake up and my mouth is painfully dry. Fortunately that is a rare occurrence. As I come out of treatments my need for those other medications will go away so I am guessing that while I will have lingering dry mouth it won't be to the point of always in pain. My guess is that I will be more aware of it and most likely always have a water bottle with me. That and my dreams of making the Olympic Spittoon team are probably gone as well.

Getting back on track the big issue I have now is Dysphagia, swallowing. With eating there are three aspects that have been effected by my treatment plan. The first is dry mouth, the second is swallowing and the third is taste. Taste is another area that changes. What I have been told is that it can be permanent and to start out with strong tasting foods. Even though I can't swallow I have done some limited field tests on my taste buds and they are not dead. (Yeah!!!) I placed some things like a cheese puff on my tongue and have been able to taste it. I tried a sip of grape juice during one of my braver swallowing experiments and I could taste that as well. Also once again for those of you that know me subtle flavors have never been my preference. So having to eat "strong" flavored foods are fine with me. That means one of the three components of eating should be all set. Oh, I also haven't mentioned smell but that wasn't effected at all. BTW you may smell lots more flavors that you taste but just smelling food doesn't really make up for not being able to eat it. :-)

Two components are left, dry mouth and swallowing. For the past few months I have combined the two into one problem (big mistake) and tried to envision how things would be once I am done with treatments. My paranoia on this also gets compounded whenever I go to see the doctor and they ask about eating and seem surprised that I am still getting everything through the PEG tube. I put that one down to the lack of hands on experience with my particular type of treatment plan. More on that later. Every once in awhile I would get the feeling that I was behind on where I should be, part of that is my fault for not just accepting that I wouldn't be eating regular food for 6-8 months or more, and the problems I had eating simple foods the beginning.

So today while doing some research again I came across a site put together by a parent of a child with cancer. The site is This is a interesting site and had a link to a food product company called Hormell Health Labs and that led me to the term Dysphagia. Suddenly things started to become much more clear to me. I had two problems. The first was dry mouth the second was Dysphagia. I was going to have some type of permanent dry mouth condition but the swallowing disorder should eventually go away. Now this became interesting. The company makes several products some that are considered puried products. I had been told that eating pureed products was a good way to go but in my limited knowledge of what is considered a pureed product I limited my vision to only those things that are in liquid form. Turns out for swallowing disorders that really isn't a accurate definition. This company makes pureed products that are shaped into patties solid items. The difference is that they are designed with some guidelines in how the break up when you eat them and swallow them. While I haven't checked out all the details on this I think meatloaf and gravy could be considered a pureed food item. On a side note again there was a project we worked on years ago where I spent many lunches at a pizza place / dinner that had excellent meatloaf and gravy. Real food that I could eat.

Now I was getting encouraged. Even if I did end up with a permanent swallowing disorder I would still be able to eat and taste some real food. It would just be in less textured form but it could be solid. Once again things like pancakes, fish patties seem to be OK. This caused me to think a bit about what my condition is like now and what my expectations probably should be.

With many cancer patients maintaining weight is a problem. In my case I have lost about 40 pounds. Proper nutrition is a key to battling cancer. In my case I get all the nutrition I need from the feedings on the PEG tube put not enough calories. That is changing with the latest feeding order. They are upping the calorie count. For many cancer patients the issue is lack of appetite, fatigue and nausea. I of course have those but in addition the added issue that the cancer was in my head and throat. This means that in addition to the normal things that keep cancer patients from wanting to eat I had a few additional issues, dry mouth and swallowing disorders. To make matters worse the dry mouth and swallowing disorders were getting progressively worse as the treatments went on. That I understood and had no illusions that I would be eating normally during that phase of the treatment plan... it was phase II that I was misguide on. I don't know much about the treatment plans of other head neck and throat cancer patients but it appears that for some of them once they are done with the radiation and chemo they are just about finished. In my case they have me on the second phase of the treatment that involves the same primary drug, Cisplatin, and the addition of a second drug, F5U. There in lies the culprit and cause of some of my misplaced anxiety on eating.

F5U One Nasty Drug

We had been told two things about the second phase of the treatment plan. First was that the doses of the Cisplatin were lower and second that the side effects were less. The side effects are less that the combined radiation and chemo treatment but they are still there and can be pretty nasty. One of the side effects of 5FU is that it irritates the mouth and throat including causing mouth sores and in my case aggravating the throat quite a bit. What this means is that my Dysphagia essentially gets worse with each treatment. There is a bit of a delayed effect in the 5FU what happens is 2-3 weeks after the treatment starts the impact is pretty strong. For example right now I am on day 7 of the treatment and my throat is raw even with the pain killers. I have to watch them to make sure I don't miss a dose by even a few minutes. Even then it barely keeps even. Just a week or so ago the Fentanyl patch I wear was able to handle most of the pain. As I get farther from the start of the treatment things slowly get better. Then BAM! Time for another treatment and we are back to the beginning. Essentially it is a losing battle at this time to try to fight against the swallowing disorder. No matter what I do each chemo treatment is going to impede any attempt to try real food. Having that knowledge is actually a relief to me. At this point I have no expectations of any real progress until 4 weeks or so after the end of the chemo treatments. That puts my mind at ease. I am sure that to the medical providers who have dealt with all types of cancer conditions, some far worse than mine, my expectations on eating seem a bit odd. Its just that when people seem surprised that I am still using the PEG tube and every one keeps mentioning mashed potatoes and gravy and ice cream as primary food sources I tend to get a bit paranoid.

My Revised Expectations

Based on these new revelations I have started to revise some of my expectations. First is that there isn't much sense to dwell on the swallowing until the treatments are completed. Much like the radiation was a cumulative impact as long as I still have a chemo treatment to go this situation isn't going to get any better. I just need to accept it and move on. The other expectation is that I should be able to eat most of the things I like and the problem is going to be dry foods. I may not have the desire to sit down and and eat a bag of pretzels but no great loss there. Most of my favorite foods are well lubricated (gotta like those sauces) and from what I have read seem to fit in with where I will be at. The biggest limiting factor now is the swallowing disorder and nothing is going to really change there until after the chemo treatments are completed.

This is one of the downsides to having a Nasopharyngeal Carcinoma and being treated in an area where they may get one case a year. The uniqueness of the cancer doesn't provide a lot of first hand experience for the medical professionals in anticipating the side effects and expectations. The treatment plan is the correct one and being delivered properly but there are two parts to cancer treatment. The first, and most important, is the success of the treatment plan but in addition quality of life during and after treatment are also always weighing on your mind. When you are laid up for 6 months or so you have a lot of time to think about these things. If at the beginning someone had said to me that even after the radiation treatment I would still have the swallowing disorders while in the second phase of the chemo my expectations would have been a bit more realistic. Looking at it now and having gone through two of the follow up chemo treatments I can say for certain there is no way I would be eating normal food with the impact that the 5FU is having on me. Instead, partly of my own fault for wishing it were true, I thought the swallowing problems would slowly recover after the radiation treatments. I hadn't considered that the second phase of treatment would have additional impact on swallowing and it wasn't realistic to expect to be able to eat anything until after the treatment is completed. Also researching the swallowing disorders and visiting a few food providers web pages I can also see that even if I did have some type of limited swallowing disorder I could still eat real tasting food and most of the foods I like would still be OK.

Armed with this knowledge I am more comfortable about the long term prognosis on eating. Yes... I know it seems like a lot of time spent dwelling on something like this but when you are up late an night and can't sleep, haven't had real food in over 5 months and every other commercial on TV seems to be about food you get a bit paranoid. :-) My view is now that until sometime in May myself and the PEG tube will be well acquainted. After that things will slowly get better. In the beginning I may be eating lots of mushy food. But in the end I should be able to enjoy most of the foods that I do like now its just going to take time. That's a relief. I got a Dim Sum cookbook for Christmas and I would hate to think I wasn't going to be able to use it. I also got a great deep fryer for Christmas (yes, these are things I wanted.) and have all sorts of plans for that. I have a feeling that things like chicken wings, french fries with lots of ketchup and donuts are going to be OK. :-)

So that's the end of the rambling for now. I am still going to miss having corned beef and cabbage on St. Patricks day but I am sure it will taste just as good in the summer. :-)

Chemo Day 6: As Fun As Before

2008-03-09T05:05:00.003-04:00

This time around is as much fun as before. The one difference is that this time I know what to expect. The mouth sores have returned along with the mucus problem. On the plus side the at home chemo provider came out to the house to remove the PICC line on Saturday. That was a big benefit of the new company. It was quick and easy. We spent more time going over questions and getting vital signs than removing the line

That's all for now. I am once again bloging from the iPod Touch.

Chemo Day 5: Now The Fun Starts

2008-03-07T22:47:00.002-05:00

Its day 5 of the the chemo treatment and the last day of the at home chemo. If I hadn't had the problem with the pump that would be done today. Instead it will be tomorrow morning that the PICC line and pump go away. I have started to notice some changes though. Prior to the start of this chemo we did away with some of the drugs that were drying up the excess mucus. This was because severe dry mouth was starting to form. Now at the end of this week I can tell that the exact opposite is starting. This afternoon there is lots of mucus and saliva so I have started back on the treatment to handle this. The excess mucus really impacts sleeping.

I am also concerned about the nausea that manifested itself last time on the weekend. I started on Zofran today (Had to wait to day 5 of chemo to restart the Zofran) and went with the schedule that solved the problem last time.

One thing I have noticed from the chemo treatments is that the side effects come and go without a lot of notice. It isn't the case that once a side effect is gone it doesn't come back. The excess mucus is an example. Last week that was going away. The biggest concern was the thick mucus at the back of the throat. (Still a concern) Now the excess mucus is back and needs to be dealt with. In this respect I look at each chemo treatment as a potential reset of symptoms. Even though things may have gotten better at the end of the last cycle this is a new cycle and things start all over again. Fortunately there is only one more treatment after this. Then hopefully as side effects drop off they stay away. That is the hope at least.

On the TV trivia I have noticed once again that there are more food ads on TV than you realize. All with nicely done tempting commercials. I have started watching the Food Channel in anticipation of when I will be able to eat again. As you may remember my other term is the "Food Porn" channel. :-) At times I wonder what type of food budget and cleaning time would be required to make these type of items on a regular basis. I like fresh herbs and such but keeping a supply in to use at will would get very expensive and all the dishes and pots used would require at least an hour per meal of serious clean up. Still its a fun channel to watch just to get ideas and to live vicariously through others. Hopefully in the next few months I will be able to start to eat normal food. Right now that is the biggest thing that I really miss out on.

Chemo Part II day 4: No Major Storms Yet

2008-03-06T23:55:00.002-05:00

Its day 4 of my second to last chemo treatment. The new pump is working fine though with the delay I will have it on until Saturday morning. Between this treatment and the last treatment we have switched insurance providers. You can ask Sue just how much fun that has been. :-) NOT! One plus with the new provider is they use a different at home chemo pump provider. In this case they will come out to the house to remove the pump and PICC line. That saves me a trip in and makes it a bit easier.

So far the side effects this time are about the same as last time. The one change is a thicker mucus forming at the back of the throat. It is causing some discomfort when sleeping but no major nausea so far. Of course last time the side effects seemed to kick in during week number 2.

Next week I think I am will be going to see the ENT doctor to check on my throats progress and also some partial blockage on one side of my nose. I wonder if that is causing some of the mucus backup. One thing that is different this time is that what is building in my throat is a lot thicker and more like what you would get out of your nose. (Yep, it is that gross. :-)) I think that is also causing some of the swallowing problems. It like I can feel the water hitting the back of the throat and getting stopped or diffused by these big chunks of hardened mucus. That seems to trigger some of the gag reflex.

One of the consequences of the change in insurance is that the ENT doctor is no longer considered "in network" so that makes using his services a bit more difficult. I was scheduled to go this week but with the problems with the chemo pump and just being in the pump for the week we cancelled that appointment. Next week though it will make sense to see him. Its not that the medical oncologist are not keeping on top of things but at this point I think its time to get a second expert opinion. From my initial conversations with the ENT doctor when they first diagnosed the cancer I gathered he has seen more of this type of cancer so he may have some other ideas.

As I mentioned the lack of ability to drink for the last several months really gets to be a drag. Until you start to pay attention you don't appreciate just how many commercials there are for different drinks or restaurants on at late night. At times it can be a bit of a downer. hopefully this will start to change in the next few weeks. Even now I am watching a show called "How They Make It" The were showing how fire extinguishers are made when I started writing this but now has switched to a donut factory. Its too interesting to want to switch channels but on the other hand its a bit of torture to watch the donuts being made not knowing when my next opportunity to eat one will be. :-( (Yep... I am a glutton for punishment. Pun intended. :-)) As the immortal Homer Simpson would say... " mmmmm... donuts." or something like that. :-) OK... now the show is covering shock absorbers. Time to wrap up this post.

I can tell the throat is getting better. It used to be that a Fentanyl patch and some additional medication taken every 3 hours were required to handle the throat pain. Now the Fentanyl patch seems to handle it except for situations where I have thrown up. There will be some mouth sores from the F5U chemo that I am getting now but that will be different than the throat pain and the pills will help handle that.

Chemo Day Three - New equipment

2008-03-05T08:57:00.002-05:00

I am posting again from the iPod touch. This round of chemo with the pump at home seems to take more out of me than normal.
One problem did crop up this week. Since the last round of chemo we have switched insurance companies. For the most part the doctors have stayed the same. One switch is the service providers for equipment and st home feedings. For the st home part of the chemo treatment this meant a new pump provider. Unfortunately the first pump had a problem where it kept reporting a air bubble in the line. After reseting the pp the error would clear for about 45 minutes and then return. I spoke to the doctors office and the pump provider sms the next day went into the doctors office so they could take a look at it. I had to go in to have the dressing on the PICC line changed as well.

There was a small air bubble in the bag that they cleared and I thought that everything was good to go. Then shortly after getting home the alarm went off again. This time when I called the pump supplier it was decided to replace the pump. They sent another pump that afternoon and talked me through hooking it up. That was pretty so simple and did not involve unhooking any of the lines from the chemo drugs. That I would not have done. I may not have mentioned this before bot they treat the chemo drugs like toxic waste. They even gave me a special kit designed to handle toxic waste spills in case there were any leaks. Yep, that is the stuff they use to go after the cancer cells. Its considered toxic waste on the outside of you bot is a cancer killing medicine inside of you. The irony is pretty amazing.

Other than that hiccup things are going along as expected. One nice thing to know is that after this round of chemo there is only one more round left. Then its just about recovery. Yippee

Whats On Tap for This Week

2008-03-03T06:58:00.002-05:00

I get to rejoin the collective again today. The 2nd of the last three chemo treatments is scheduled for today so the PICC line goes back in. Now that I have been through it once I find I am not so apprehensive about the PICC line and wearing the pump for a few days. I really just want to get these last two chemo treatments completed.

Right now the biggest side effect that I am still feeling is in my throat. It just doesn't seem to be getting any better or at least noticeably better anytime soon. The last radiation treatment was about two and a half months ago and I still can not drink anything without getting the urge to throw up. I know that my throat isn't blocked because I can throw up fine. :-) It seems to be that when something hits parts of the back of the throat on the way down it triggers a reaction to throw up. I am going to ask if I can get a referral to the ENT doctor that first diagnosed my condition. While the medical oncologist are fine at treating the symptoms like nausea and such I would like to get an experts take on my throat. It may just be that with the large amount of radiation I had the healing process will take time. On the other hand I would like to make sure that there isn't anything else I could be doing to help move the process along. The one thing that I really miss throughout this whole process is just the simple ability to be able to take a cold drink of water. I haven't been able to do that for about 4 months now. Sometimes we take the simple things for granted but just being able to drink something to clear your throat or mouth is something that I really miss.

Making Sure I Experience Everything...

2008-02-25T07:30:00.004-05:00

Last Friday I went to the doctors for a regular status check. At these appointments they do a blood test and check how I am progressing on the side effects. I am making forward progress but it is still slow going. At this point I can talk a bit now and that alone is a big improvement. No more hand gestures or nodding my head to try to communicate. One thing this experience has taught me is that I would be lousy at playing charades. :-) The initial blood counts came back low. While I was undergoing radiation treatment there wasn't much they could do about the white blood cell count. There is a drug that can boost the white cell count but you can not take it when under going radiation. As it turns out later in the day when they had the final blood test results back they called and scheduled me to come in on Monday to get the shot. At this point I am neutropenic. That means my white blood cell count is lower than they would like and I need to be careful to avoid infection. They also want to get the white blood cell count back up before the next chemo treatment that starts in a week.

A new side effect

Earlier in the week when getting up out of a chair I felt a pain and tightening in my right leg. My thought was that I has twisted or pulled something getting out of the chair. Over the next two days my leg was a bit sore if I tried to walk on it and it did feel like I had pulled something. Then on Thursday I noticed that my lower calf and ankle has swollen up a bit. Since I was at the doctors on Friday and the oncologist office does other work outside of oncology I thought I would ask if they could take a look at my leg and see if I needed to go see my regular doctor. The medical oncologist took one look and immediately new what the problem was. Apparently I had developed a blood clot in my leg. The swelling was the blood pooling below the clot. Of course you can imagine my surprise at that. According to the doctor this is a potential side effect of the chemo treatments. They increase the risk of blood clots.

To be sure that I had a blood clot and get me started on treatments right away they sent me to the hospital to have an ultra sound exam on my leg. Fortunately the hospital is right behind the doctors office and they were able to get me in and out in around an hour. I new that the doctors office was taking this seriously because they would not let me leave the hospital until they had the results of the test and then if it turns out that I did have a blood clot they wanted me back at their office.

Learning A New Skill

So after the ultra sound test I went back up to the doctors office. I was told that the blood clot isn't a big deal as long as it gets treated. The treatment consists of taking a blood thinner called coumadin once a day for a few months. This in essence helps melt the blood clot. It takes a few days possibly up to a week for the coumadin to build up to the desired level in my system to treat the blood clot. While they are waiting for the coumadin levels to build up they have another medicine to take so that the treatment for the blood clot starts right away. This treatment involves taking a different drug once a day by injection. Yep, that's right. Once a day I have to get an injection of a drug called Arixtra. To receive the injections they gave me a home injection kit. Yep, you read that one correct as well. I get to give myself home injections. This from the person with with the needle phobia.

Actually the injections are not that bad. They provided me with a starter kit that included the syringes prefilled with the medicine and a sharps container. The needle is similar to the ones used for insulin injections. The injection is delivered in the waist area. The way it works is I pinch an inch (just like the old Special K commercials) and swap it with an alcohol wipe. The syringe has a cap over the needle and the plunger. Once the alcohol dries up I take the caps off, pinch the inch again and inject the needle. Its only about a half inch long or so and goes in pretty quick with just a small pinch. Then I push down the plunger until the bubble in the syringe reaches the end near the needle. I then take the needle out and push the plunger a bit more until it clicks. This retracts the needle back up into the syringe so it isn't exposed. By doing this it prevents me from accidentally sticking myself with the needle. I dispose of the needle in the sharps container and that is it, all done. It takes about 2-3 minutes total to administer. The design of the syringe is actually pretty ingenious and makes the process pretty simple.

So for the person that started out having a needle phobia I have had countless IV's, blood tests, a PEG tube, a PICC line and now am doing at home injections. If I didn't know better I would swear my body is having the reactions to insure I get to experience the maximum number treatment options. It must think there is a book deal in this somewhere and we needed some extra material for additional chapters. :-)

Chemo Week 2 Update

2008-02-20T08:39:00.002-05:00

This is the second week since the end of the 5FU update. So far the change in the frequency of the nausea medicine seems to have solved the problem of throwing up. Yippee! (Throwing up 4 plus times a day was starting to get old.) I am experiencing a different set of side effects from the 5FU and there is one odd one that I think is from the Cisplatin.

One of side effects from the 5FU at this point is a general sense of tiredness. I don't think its fatigue because with fatigue there are problems sleeping. At this point I could fall asleep almost on command. Prior to all of this I would have just downed a few shots of espresso but that option isn't available yet. :-) Another side effect is a numbness or tingling sensation in the hands and feet. I don't think I am feeling numb in my fingers but I do have a loss of dexterity. It is like they are only 90% there. A very odd feeling. It doesn't really impact much of what I can or can not do though I am a bit more careful when handling things.

Another side effect is mouth sores. This one came on loud and clear. On top of the residual radiation effects my mouth was quite the painful place. Fortunately they do have me on some good pain meds and that seems to keep it under control. The downside is that one of the side effects of the pain meds is to make you drowsy. I have noticed recently that the mouth sores seem to be dwindling a bit now.

Now for the odd side effect. I think I mentioned back aways that I didn't need to shave because none of my facial hair was growing. Well about 3 weeks ago one half of a mustache started to grow. Now I could grow a full mustache but no other facial hair has returned yet. Very strange. Not too worry though. No mustache for me.

To help combat the tiredness I am starting to do some light exercises. Basically just some simple exercises with 2 pound hand weights. We have a Nintendo Wii and I also plan to start playing tennis on that for a few minutes a day with the goal to work up to a combined 30 minutes. I had hoped that the new peripheral Wii Fit would have been available by now but it isn't due out until mid May at this point. By then I will be all done. (Of course I will probably still get it then. :-))

Weather Update

2008-02-14T20:43:00.002-05:00

The solution to the two Hurricane weekend turned out to be pretty simple. The anti nausea medicine that I am taking was originally prescribed for 3 times a day back in November. In January when I got a refill along with a few other new prescriptions the doctor changed it to twice a day. I really didn't think much about it at the time. My pain medication had changed and two other new drugs were added. I think I just assumed that it was a different dosage.

So over the weekend I was taking the anti nausea medicine every 12 hours. When I spoke to the oncology nurse on Monday (Note: The term speaking may be overstating my side of the conversation. Grunts may be more like it. :-)) we talked about the meds and she was considering something else when I mentioned that I was taking the anti nausea medicine once every 12 hours. She changed that to once every 8 hours. That was when I remembered that the initial prescription was for every 8 hours. A quick look at the paperwork in the prescriptions folder and sure enough in January it was changed to every 12 hours.

I switched to every 8 hours and that seems to have done the trick for the nausea. I took a look at the log for the weekend and sure enough the "events" were all 8 hours or more after taking the nausea medicine. When I was looking for some type of pattern I looked at just the recent changes in the medication like my even newer pain meds.

Now that the nausea is taken care of the biggest problem is mouth sores and the ever present mucus issues. Chemotherapy disrupts fast growing cells. Unfortunately it is not as precise as just targeting the cancer cells. While going after the cancer cells the drug also gets some good cells. In this case it also effects cells in my mouth an lips. The pain meds help some but not as much as I would like.

A Two Hurricane Weekend

2008-02-11T07:49:00.000-05:00

There really are two time lines for the current chemo treatment. The first is the one for the Cisplatin that is delivered on day one and then the second is for the 5FU that is delivered over the next 4 days via the PICC line. For the Cisplatin this weekend was days 6 and 7. For the 5FU this weekend was really the start of days 1 and 2.

The PICC line came out without a hitch on Friday. They measure the line after they take it out to make sure none was left in. (I really don't want to think about what they would do to try to retrieve a part of the line if that happened. :-) ) So for now I am a little bit less a part of the Borg.

The weekend was a bit rough. One of the side effects of 5FU is mouth sores. For some reason it seems that all of the treatment plans I am on tend to impact the mouth. I wonder if they are trying to tell me something...

In addition to the mouth sores it appears that the anti nausea medicine isn't working as well with this set of chemo drugs. The weekend was pretty much spent trying to manage the mucus issue that seemed to kick into high gear this weekend, making sure I got enough nutrition and water despite throwing up every now and then and dealing with the mouth sores. This morning I am going to put a call into the medical oncologist to see what else we can do to help manage the nausea. For now I have started keeping track of the times when I do throw up to see if it correlates with certain drugs, feedings or anything else. So far nothing is jumping out at me as the culprit.

While the weekend was a bit rough I tend to view it as just another sign that the treatment is working. If my healthy "good" cells are impacted imagine what the remaining cancer cells must be going through. Fortunately there are only two more chemo treatments and then I am done. Hopefully the doctors will be able to come up with something that will contain the nausea a bit better.

Chemo Day 2: No Major Storms So Far

2008-02-06T20:59:00.000-05:00

So far there have been no major storms from this next round of chemo treatments. The biggest side effects so far have been indigstion, an increase in dry mouth and a general overall tiredeness. This of course has made it difficult to concentrate on things.

The other big change this time around is the addition of the IV pump I have to carry with me for 4 days. This is a continuous infusion that can not be turned off. The pump is in a bag that looks like a larger fanny pack but from the weight of it I don't wear it that way. I carry it more like a shoulder bag and set it down when I am not moving. There is plenty of IV tubing in the bag so it can be a few feet away from me. The pump runs on batteries and can also be plugged in. At night I plug the pump in to charge the rechargable battery. Supposedly the rechargable battery will last two days on a full charge and it also has 2 double A batteries as a backup that can run for 2 days. By charging the unit at night I don't have to worry about constantly plugging it in during the day.

One thing they did show me is how resiliant IV tubing is. It is almost impossible to kink. I was glad they showed me this because it made me more comfortable positioning the unit when sleeping. I was paranoid about what would happen if I rolled over on the tubing. Even if it does get blocked the unit has an alarm that goes off to let me know. This has happened once or twice at night and I just moved a bit and it cleared right up.

I Am Borg Designate 1 of 4: No Storms So Far

2008-02-05T05:02:00.000-05:00

I took one step closer to joining the collective yesterday when I got me first PICC line installed. I now have a feeding tube (PEG Tube) and a semi permanent IV. As with most thinks the anticipation of getting it installed was worse than getting it put in.

The PICC line was put in because part of my chemo therapy is delivered at home over a period of 4 days. This last set of 3 chemo therapy courses are a combination of the initial chemo drug, Cisplatin, that is delivered the normal way only at a reduced dose and a second drug 5FU that is delivered via a pump slowly for a period of 4 days. The idea behind the infusion is two fold. Be delivering the 5FU over a period of days it may reduce some of the side effects. Also be doing a constant infusion over the 4 days it is attacking the cells at different stages of their development. The goal of these last three treatments is to get any microscopic cancer cells that may still be lingering around.

Getting the PICC line put in was interesting. One thing I have noticed is that today most medical procedures, at least the ones that I have had so far, seem to come in kit form. This one had everything including a paper tape measure, scissors and tweezers. Nothing appears to be left to chance. The nurse got started by selecting a vein to use right below the inside joint of my elbow. Then using the kit she took out a paper tape measure and measured up my arm and into part of my chest. I think the distance was 51 centimeters. Using that tape measure she cut the PICC line to that length. The PICC line is a very thin piece of flexible tubing that in inserted in a vein in my arm and then threaded up that vein into my chest. To help with this there is a metal wire in the tube that provides some stiffness when it is inserted.

To insert the PICC line they start with what looks like a normal IV except that at the end it was able to break away from the PICC Line. This is inserted like a normal IV only they did numb the area locally. the PICC line is then threaded through this up into the vein and into the chest. I really couldn't feel it at all as it worked its way up into my chest. (Good job nurse!) Once it was in she tested it by drawing some blood and then flushing it with saline solution. The guide that was used to thread the PICC line was removed and she put in a dressing that holds it in place on my arm.

Once the line was installed they took at chest XRAY to make sure that it was in the right place. There is a off chance that it could have found a path up my neck or somewhere else they don't want it to be. According to the radiologist it was a perfect placement. Bonus points for the nurse! The actual time to install the PIC line once everything was in place was less than 5 minutes.

The PICC line was used to deliver the Cisplatin chemo drug and then I went over the oncologist office to pick up the pump and the 5FU. After I have had the pump for a day or two I will put up a post on how that is working out. So far no major issues.

Battle Plan Delayed By 3 Days Due to Weather

2008-02-01T10:24:00.000-05:00

Sometimes the best laid plans get side tracked and that is what happened today. I woke up to help get our oldest son ready for the bus when about 10 minutes before the bus was to arrive Sue said to check for closings on the TV. I hadn't paid attention to the weather outside but apparently there was a pretty bad ice storm. Sure enough the schools were closed and they were recommending no unnecessary travel. With that in mind I rescheduled the next chemo until Monday. Time for the troops to stand down for the weekend, get some R & R and prepare for battle on Monday.

The Second Phase Of Operation Overlord Commences Tomorrow

2008-01-31T18:47:00.000-05:00

I met with the medical oncologist yesterday and while my progress recovering from the primary treatment phase is still going slow we decided to proceed with the next phase. At this point the primary side effects I am feeling are from the radiation treatment. This next round of chemo shouldn't make that any worse, it will just introduce a different set of side effects. (Fun, Fun!) My view on this is its better to get it all out of the way now rather than delay any longer.

The purpose of this phase of the treatment is to get any stray cancer cells that may be hiding that didn't get caught up in the initial round of treatment. From what I have been able to read this second phase of chemo helps reduce the chances of the cancer coming back. The first phase with the radiation treatment leading the air assault was targeted at the identifiable tumors. The chemo that went with the radiation helped make the radiation more effective and also helped get any stray cancer cells in the body. This next round is a reduced dosage of that first chemo drug, Cisplatin, combined with a second drug F5U. According to the medical oncologist the use of a combination of chemo drugs has been one of the more significant advances in chemo therapy in recent years. Apparently the two working together are more effective than doing them separately.

The Cisplatin will be delivered the same way it always has been. I will go to the hospital and they will deliver that via an IV. It takes about 6 hours or so because of the support drugs that go along with it. The 5FU is delivered in a bit different way. Rather than use a regular IV they will install a PIK line tomorrow. This is a semi permanent IV that runs through a vein up my arm and into my chest. This is to make sure it doesn't come out. After the delivery of the Cisplatin they will give me a special pump that is in a fanny pack. I will have to wear this continuously for 4 days as the pump slowly delivers the 5FU. This method is referred to as an infusion. (I have a few other names for it that I won't go into here. :-)). Apparently one of the reasons for this method of delivery is that it reduces the impact of the side effects of the 5FU as opposed to delivering it all at once.

I must admit with my needle phobia I am a bit apprehensive about getting a PIK line installed and wearing this pump for 4 days. I am told it is no problem but one thing I have learned as I go through this process is that the people telling you it is no problem most likely have never had to go through the procedure. Still for 4 days I can endure anything. After the 4 days I go back to the doctors office and they will remove the PIK line. All together I have three more chemo treatments including this.

There is one possible side effect from the 5FU that will cross over the the side effects from the radiation treatment. 5FU can cause mouth sores. Once again my view is that it is better to experience both sets of side effects simultaneously for a shorter period of time rather than drag this out.

Now that the treatment regime has started back up I will be doing more frequent posts to the blog and reactivating the hurricane measuring system for the chemo. Hopefully I don't hit anything more than a tropical storm. :-)

I Sip Therefore I am...

2008-01-29T19:58:00.000-05:00

Not a lot of changes in the last week. The most noticeable thing is that I have been testing out taking sips of water each of the last few days. I haven't been drinking regularly but testing out the waters so to speak, pun intended. :-) Basically just seeing if I can choke down some water through a straw. It has been a mixed set of results. I can do it about half the time but some times it has caused me to have things come right back out. What I can say is that my throat is slowly getting better.

One think I have learned is timing is everything. For example don't try right after having two cans of the liquid nutrition stuff and a cup of water. (I learned that one the hard way. :-)) While I am still taking everything through the PEG tube I can see the path to where I will be able to start drinking water on a regular basis and from there moving towards some food. I really can't wait for that. I have to admit that at this point using the PEG tube is getting to be a bit of a chore. The problem is that with the PEG tube there is a process just to getting started. I have to clean the syringe that attaches to it and the entrance with an alcohol wipe, then run some water through it, add an medicines that need to be taken (I grind up the pills) then pour in the food. When I take in 2 cans and the water at a time I then need to sit pretty still for about an hour to let it settle. I really miss the days when I could just graze on food and consume way more calories than I should. :-) Right now my schedule in some respects is dictated by the PEG tube. Fortunately I seem to be maintaining my weight the last few weeks. At this point I am down about 30 pounds and really don't want to drop any more.

What's Coming Up

Tomorrow I meet with the medical oncologist. At this point things have settled down and I am slowly getting better. My guess is that I will start the next round of chemo this Friday. This round is a bit different than the last. It starts with another course of the main chemo drug, Cisplatin, only 80% of the amount that I got last time. Then they hook a pump to me and give me another drug, 5FU, over a period of 4 days. A semi permanent IV line called a PIK line will be put in on Friday and then taken out 4 days later. The pump will be in a fanny pack of sorts and I will have to wear it continuously over the 4 days. Yep, this is where I become even more like the Borg. I do hope they green light this to start on Friday. The chemo treatment isn't going to affect my throat or cause and delay in it healing. There will be some side effects of course but they will be separate from the radiation. I would rather get this started and over with as soon as possible.

The Ground Troops Get A Weeks Reprieve

2008-01-23T10:45:00.000-05:00

Yesterday I met with the nurse practitioner to see how I was doing. Things are progressing but very slowly. I still can not swallow and all nutrition comes through the PEG tube. This has become a bit of a challenge with regards to maintaining my weight. As of this point I have dropped about 30 pounds. Unfortunately the liquid diet stuff they have me on has a limited amount of calories. In order to maintain my weight I need to take in 8 eight ounce cans during the day.

Given that I am still having a problem with the mucus and that leads to other issues such as sleep and keeping food in they decided to postpone the start of the final three chemo treatments another week. They want me healthy enough at the start so that I can go through the treatments without taking a break. I was concerned about delaying the treatments and the effect on the cancer but at this point they did not consider that an issue.

So for now the game plan is more of the same. Just keep going day by day getting better. For now the next wave of assault gets another week off.

Wheres Waldo Been?

2008-01-17T16:07:00.000-05:00

It's been awhile since I last updated the blog. Until recently there hasn't been much to report. I am still slowly recovering from the radiation treatments. At this point I can put a few words together but if I try to talk for any length of time it creates problems that can lead to a gag reflex and everything that goes along with it. :-) My throat is still sore and I am not able to eat or drink anything. Everything is taken through the PEG tube.

Yesterday I met with the radiation oncologist. The plan was to use a scope to check out my throat. The scope enters via the nose and works its way back to my throat. Unfortunately due to my condition he couldn't get the scope all the way back there. He did think that I may have a yeast infection in my throat that is causing some of the problems and prescribed two different drugs to help with that. I have been on both of these before. One is a general antibiotic and the other is the same one used to treat thrush infections. That last one has some side effects including drowsiness. I have to admit that when I started taking them I did end up sleeping some during the day afterward. Hopefully these will clear up some of the problems in the throat. It has been just about a month since the radiation treatments were completed and I was hoping for a bit more progress at this point.

On other news they have scheduled the start of the next three rounds of chemo. They put some distance between the end of radiation and the start of chemo to give me some time to recover. The next round starts a week from Friday. This round is a bit different than the first three treatments. The first difference is that the main drug used, Cisplatin, is used at a lower dose. This dose is 80% of the dose used during the main treatment. The medical oncologist said that while it may not seem like much of a reduction it will lessen the side effects. The next change is that a second drug will be used as well. This drug is 5FU. It is delivered via an infusion over 4 days. To accomplish this a special IV will be installed called a PIK line. (I am not sure I spelled that right.) This is a semi permanent IV line that will have a small pump hooked up to it. This pump slowly delivers the drug over 4 days. This is also designed to lessen the impact of the side effects. They will give me a fanny back to wear that will contain the equipment. I will have to wear this non stop during the four days. This is when I really start to join the collective. Not only will I have the PEG tube but I will have the PIK line coming out of me as well. :-) I have to admit I am not particularly looking forward to this phase of the treatment. The side effects will be less and wearing it over the weekend will not be too bad but I don't relish the idea of a semi permanent IV line being hookup up to me for a few days. When the 4 days are up they will take the PIK line out.

After that there will be two more treatments that are the same. Then I am done. The only thing left will be the ongoing testing that will take place for quite some time. I already have another CT scan scheduled for March and a PET scan will be scheduled for some point after the treatments are complete.

Next week before the chemo treatment I meet with the radiation oncologist on Tuesday. I probably won't post another update until after that meeting.

Report From The Front Lines: Enemy In Full Retreat

2008-01-07T14:02:00.000-05:00

Today we met with the medical oncologist. The purpose of the meeting was to see how I was recovering from the initial treatment plan and to go over the latest MRI test results.

I am slowly recovering from the impact of the radiation treatments. Its been 2 weeks and 5 days since the end of radiation and I am still having the mucus and sore throat problem. At this point I still can not swallow or talk much. On the plus side I can tell that it is slowly getting better. The doctor said it is a bit slower than he would like but given that it was a pretty strong treatment plan it is not unexpected. He scheduled me to come back in two weeks to see how I am doing and then discuss scheduling the follow up chemo treatments.

After he did his initial exam we went over the MRI test results. Nothing but good news there. The lab that does the MRI writes up their own report and sends it to the doctor. The doctor can also pull up the images on their computer as well. The report by the lab said everything looked normal. The doctor called them up just to verify and say they were looking for cancer. He then showed us a side by side comparison of the initial MRI and the one that was done last week. What a difference. The MRI just covered the sinus / brain area, not the neck. The tumor on the initial MRI was about the size of a walnut with a stem attached. On the latest MRI it wasn't there at all. No remnant was left. This is the first that we have seen the initial MRI and I am somewhat glad that I hadn't seen it before. I think if I knew the size of the main tumor I might have been a bit more stressed out.

The doctor also did a physical examination of the lymph nodes in the neck and he said they feel normal to him. It appears that the main treatment plan was successful. Between the air assault (radiation treatment) and the ground forces (chemotherapy) the enemy is in full retreat. That definitely makes all of the side effects and such more tolerable.

So at this point everything is looking positive. I have to admit that there was some apprehension between when the MRI test was performed and getting the results today. While I felt that everything would be positive there still was some uncertainty. I imagine it will be that way for the next several years as they test me to see if the cancer has come back.

Until I start the follow up chemo treatments I will probably drop back to posting updates on the blog once a week. In this case no news is good news. :-)

Happy New Year!

2008-01-02T16:36:00.000-05:00

Its hard to believe that 2008 is already here. It really seems like yesterday that I first found out I had cancer and was getting ready to start treatments. The recover phase from radiation seemed far far away and now its here.

There really isn't much to report. I am slowly getting better. At this point I still can't talk more than uttering a single word and I can't swallow or of course eat but I do feel that I am moving closer and closer to those goals. My energy level is getting better and I am starting to keep "normal hours". No more sleeping all day and being awake half the night. (The food channel just lost another late night viewer)

I imagine that it will change a bit when I have the follow up chemo treatments but the impact on my throat will only continue to get better. From what the radiation folk told me I will start to get better slowly at the beginng and it will accelerate as time goes on.

Whats Up This Week? Not Much, Yippee!

2007-12-29T23:07:00.000-05:00

Its amazing the difference a week can make. A week ago I was feeling the full brunt of the radiation treatments and the last major chemo. It was all I could do to get out of bed and handle the feedings with the PEG tube. Now, a week later my energy level is up and I don't need to nap as much during the day.

This upcoming week the only thing on tap is a MRI for Thursday. That is to see what is going on in the nasalpharyngeal region. That will provide a update on how the radiation worked. The medical oncologist said that at this point they can't do another PET scan because of the impact of the radiation treatments. They will do when the the last set of chemo treatments are done.

Next week we meet with the medical oncologist to discuss the next steps for the last three chemo treatments. In the meantime my job is to recover from the radiation side effects. One of the major side effects are the incredible sore throat. It is so sore that I can't even swallow at this point though it has gotten a bit better in the last few days. Another side effect is dry mouth. There are various stages of dry mouth and we won't really know where I end up at for several months. As I recover some of the other salivary gland functions may come back or the may not. This could be the one significant long term side effect. Related to the throat and dry mouth is an inability to really talk at this point though that has also gotten a bit better over the last day. Lastly is the impact on my mouth. There are some sores and I have no taste whatsoever. The taste buds will come back but no one really knows how much. According the the radiation oncologist that could take up to 6 months.

My primary concern now is the recovery of my throat. I need to be able to start to swallow if I am going to get off of the PEG tube. The PEG tube was definitely needed but having to do the feedings on a schedule and such is a pain. I miss getting calories the old fashioned way, snacking all day long on junk food! Hopefully my throat will recover during the month of January. I have to admit that during the holiday season the one thing I really missed is eating.

Meeting with the Doctor... maybe?

2007-12-28T05:01:00.000-05:00

Today we had our regularly scheduled meeting with the medical oncologist. When we got there and signed in they came over and told us the appointment was not for Thursday but was for Friday and that the Doctor wasn't there. Fortunately I had the calendar that they had given me with the the doctors appointment specifically written in on the 27th. At first they suggested we come back on Friday but Sue explained it took a bit of coordination with the kids to be available on Thursday. They checked and decided the doctor would be back in about and hour and we could wait if we wanted to. Seeing as we already were there and had coverage for the kids arranged we decided to stay.

When we met with the doctor we discussed the current state of the symptoms. We explained that the urination was still a big problem. (Part of the reason I am writing this at 5 in the morning is because I haven't been able to sleep much all night and not because the Discovery Channel had a "How Its Made Marathon" going. :-) Though if they did that would be a good reason to stay awake.) I was surprised that after the special blood samples they had taken on Monday the only results he had was the blood counts. He seemed to think that this was a side effect of the chemo drug and would go away in time. They did order another set of blood tests to check the kidney function and also to do a urine culture.

As I mentioned the other day the urinary problem is now my biggest concern. During the day I literally can not go longer than 30 minutes without the urgent need to urinate. Tonight for example I haven't been able to sleep in a single stretch longer than 20 minutes. The reason this is a big concern is that my energy level is starting to return and the inability to sleep or just not have to get up every 15 - 30 minutes starts to drag that back down. It also makes it difficult to focus on any activity for more than a few minutes at a time. Hopefully based on the tests they may have some other suggestions of how to deal with this.

After we discussed how I am now we discussed the general prognosis. So far the medical oncologist feels the treatments are working well. Right now they are going to give me a break to recover from the radiation a bit before the next round of chemo treatments start. There are 3 more treatments left but they are at a reduced dose of the main chemo drug along with an infusion of another drug. According the medical oncologist these will pack less of an impact than the first set of treatments. The other plus is that I won't also be going through radiation at the same time. Pretty much as we were told back at the beginning this last week would be the worst part of the treatment plan and that is now behind us.

At the end of next week I am scheduled for a MRI to take a look at where the main tumor was in the sinus area. Then the week after that we meet with the medical oncologist. My guess is that depending upon how I am doing at that point they will schedule the last three treatments. When all of the treatments are completed another PET Scan will be performed that hopefully will come out negative. (Once again proving I have a radioactive personality. :-))

Where's Waldo Part II

2007-12-26T18:40:00.001-05:00

Last Sunday and Monday were probably the lowest point of the treatment so far. As I mentioned the way radiation works is it starts like a freight train. Slow at first but each treatment adds momentum. Once its over you still have the momentum to deal with.

Sue did call the medical oncologist on Sunday and they prescribed a antibiotic in case I was coming down with something. The hardest part of dealing with the down days is the ripple effect if I don't keep up with the PEG tube feedings and medicine. Then the energy level starts to drop even more. Sunday was a rough day and my primary goal was to keep up with the feedings and medicine. That alone becomes and interesting timing challenge. One thing the doctor suggested to help with the mucus was sudafed. Sue went to the pharmacy at Tops to pick up the antibiotic prescription and the pharmacist gave her a bit of a hard time about getting the "real" sudafed. (For those of you that don't know they reformulated it due to the meth heads using it to make crystal meth.) You can still get the real stuff but it is controlled behind the counter at the pharmacy and they scan your drivers license number. Either Tops didn't have it or the pharmacist didn't know what he was talking about but he directed her to a over the counter version. In his defense Sudafed has done a good job obscuring the labels so the new formulations appear to be very similar to the old stuff. I can tell you from experience that the two are nothing alike in results.

So Sunday the goal was just to lay low and endure the situation. On Monday morning I felt a bit better and didn't see the need to go the doctors office. I already had all the prescriptions I needed and I wasn't sure I was up to the trip. Also we have a regular appointment with them on Thursday. Then much to our surprise the doctor called us at home that morning to see how I was doing and ask that I get some lab work done and come in for a visit. They were closing at noon that day and would be closed on Christmas so he wanted to make sure I was set. Bonus points for the medical oncologist. This time the blood work was a bit more involved than the normal take a tube to check cell counts. The did that but also took two separate samples from each arm to check for other stuff as well.

We met with the doctor and it turns out I have yet another side effect from the chemo. It appears that I have urinary tract infection. Basically it means that I have the urgent need to go to the bathroom on a regular basis but most of the time its a false alarm. (There is more to it than that but I will leave that up to your imagination. :-)) We should find out more about that when we meet with the doctor tomorrow.

On Christmas I started to feel a bit better. I was able to get up and unwrap presents with the family and play some video games during the day. The biggest distraction is the urinary tract infection. It is very disruptive (not to mention uncomfortable :-)) and doesn't let you get much sleep at night.

On Wednesday I definitely started to feel a bit better though the infection was still there. The antibiotics I am on should be helping that soon I hope. My guess is that I have bottomed out from the radiation and should start the road to recovery from that phase soon. Tomorrow we meet with the medical oncologist and aside from going over the rest of the chemo schedule I want to get his take on how the treatment is progressing. I will post another entry after the visit.

Wheres Waldo Update

2007-12-23T07:22:00.000-05:00

It has been a few days (4 to be exact) since the last radiation treatment. It is a bit different to now have to go to someplace for treatment every Monday through Friday. One benefit to going in every day is bouncing questions off of the people at the radiation facility about different side effects I may be experiencing. Now the only way to do that is call the oncologist office. That is what we plan to do today.

Its Sunday and the mucus situation hasn't gotten any better. It actually making things worse at this point. I was told that the week after the radiation treatment ended would be the worse and it is living up to that point. The biggest problem is the inability to get comfortable in any position for any length of time. This has also disrupted any type of normal sleep pattern. Hopefully when we talk to the doctors office today they can make some suggestions on how to deal with the mucus situation. My guess is that the radiation treatment to the sinus areas has aggravated the mucus production and is causing the problem. According to the radiation oncologist the impact of the radiation treatment will accumulate until about 1 week after treatments stop. That would put the low point at Wednesday and then things would start to pick up slowly.

Hopefully there is something that they can do about the sleeping. One thing that would make this a bit more bearable is the ability to just zone out part of the time. There isn't much on TV late at night (other than get rich quick schemes and advertisements for certain "enhancement" products) After awhile the food channel AKA the Food Porn Channel gets a bit old. BTW have any of those people every had to actually consider the ingredient cost and clean up time when they are cooking? :-)

So hopefully the oncologist will have some suggestions today for what we can do to help make things a bit more comfortable.

Update on Chemo III: Still a Tropical Storm

2007-12-21T10:53:00.000-05:00

This chemo treatment seems to have more of an impact than the second one did. Its not as bad as the first one but I am experiencing fatigue today and that is something I haven't seen in awhile. I am also having the same mucus problem that caused me concern a few weeks ago. So far it is being managed but in general it is uncomfortable and does make it difficult to sleep. Hopefully as I get another week between myself and the chemo treatment this will start to abate. Also at that point I should start to recover from some of the radiation effects.

Chemo III Update and Last Radiation Treatment

2007-12-20T06:46:00.000-05:00

Final Radiation Treatment!

Yesterday was my last radiation treatment. 35 out of 35 completed right on schedule. Yippee! After the treatment they gave me the mask to take home as a souvenir along with a certificate showing I completed treatment. I have to say again that everyone at the radiation facility were great to work with. Their positive attitudes and the overall environment of the place definitely helped me during the treatments. According to the radiation oncologist I will experience some of the incremental negative impact of the radiation for the next week or so. That is due to the lag time between treatment and the impact hitting me. After that I should start to feel better. I won't miss going in for the daily treatments but I will miss the people at the radiation medicine center.

I think I should start to see some improvement soon. I know that when I had 2 days off on the weekends Sundays were generally good days. Also I don't need to work the timing of the lotion for my neck or feedings around the radiation appointments. BTW on that note I can't imagine having to coordinate all of this if I had to drive up to some place that was an hour and a half away for treatments.

Chemo III Update: Not A Hurricane, More Like A Tropical Storm

Yesterday was a bit rough regarding the chemo. Nothing like the first time but I did have a persistent indigestion. Enough so that I scaled back the amount of food at each feedings and increased the number of feedings during the day. I think part of the indigestion comes from the support drugs that you get put on for the 3 days after chemo. I am finished with those now so hopefully today will be a better day. All I ended up doing yesterday was feedings and then manage my body position in between feedings. I think I mentioned that right after a feeding I feel best if I sit back at a reclined angle. That was definitely true for yesterday. Even standing upright let alone leaning over to wash hands or use a keyboard would cause problems. Fortunately I was able to keep everything down and was able to get in all the various drugs and such that were required. Just doing so became a full time occupation.

Whats Up Next

The next several days are clear of any appointments. I have to have some blood work done after Christmas and then meet with the medical oncologist to go over the next steps for the follow up chemo treatments. Based on what the radiation oncologist has said I have responded very well to the radiation treatments. I will be interested to get the medical oncologist opinion on how the treatments went and the what the rest of the game plan is when we meet next week.

Chemo III: Day 2 Report

2007-12-18T21:47:00.000-05:00

Once again not much to report today and that is good news. I had my 34th radiation treatment today and now there is only one more to go. So far my condition at this point in the treatment process is better than I had thought it would be. After the second chemo treatment when I was having a problem keeping food down I imagined I would be a lot worse at this point. Instead the only major side effect that has been added on with the third chemo treatment is tiredness. I found that I am sleeping a lot more on day 2. Looking back at my notes from the first two treatments I was also sleeping a lot more in the days following treatment as well. I don't think I noticed it as much because so many other side effect were going on. This time around I have the feedings under control, I actually gained a pound over the last week. I also have the mucus discharge managed. lastly the radiation plan was changed for the last 8 treatments and that has allowed some parts to start to recover.

So far so good for chemo III. One of the benefits of my last radiation treatment being tomorrow is that I don't need to take the appointment time into consideration when applying ointment to the rashes on my neck or when I do the feedings. As a rule I can't put anything on my neck 4 hours prior to treatment. When they are schedule for the morning this means that I don't but anything on at all in the morning. Also I try to schedule the feedings so that they are at least one and a half hours prior to treatment just so things settle before treatment. I also don't want it to be too long between feedings so that my pain meds wear off while I am there. After tomorrow I won't have to take that into consideration. Hopefully the tiredness will follow the same pattern as the previous two chemo treatments and subside after day 3. Who knows I may actually start to get back to my normal energy level. It will still take some time for my voice, throat and taste buds to recover and of course there are the 3 follow up chemo treatments but after tomorrow the worst should be over. Yippee!

Chemo III Day One Report

2007-12-18T03:38:00.000-05:00

So far there isn't much to report about day 1 and that is good news. I arrived at the hospital around 8:00 AM and was put into a separate room for this chemo treatment. No... its not that I am such a difficult patient they wanted isolate me. :-) The setup at the hospital is that they have a few chemo chairs that are separated by privacy screens and actually given a good amount of space. They also all have TVs and of course the WiFi connection. In addition to those areas they have a room off of the chemo area that can be used to put a bed in if needed for patients that may require a bed or additional procedures. I also think I saw a prisoner being treated in there once. Today there wasn't any situations that required that room and since I was probably going to be there all day they gave it to me. It was nice because I was able to spread out my stuff and not have to keep getting in and out of the chair to get it. I also have to say that the people at the hospital were very nice and accommodating as always. They were right there with me hoping for the correct blood count so the treatment could go ahead. That was nice because I really was concerned about not being able to go ahead today.

I seem to be bringing more and more stuff with me to these appointments. Today I had my normal "cancer bag" stuff that includes all my paperwork since the start, notes and prescription info along with the log of my feedings and drug usage. Then because I was going to be there all day I had to bring my feeding stuff with me and that includes the drugs I needed to take during the day, the plastic syringe that I use to set up the feedings and a few other miscellaneous items.

Then on the electronics side I have my notebook computer and today I brought my iPod Touch that I used for the first posting from the hospital. This lets me get some work done while I am there even if it is just reading up on some technology articles.

The treatment pretty much went off with out a hitch. There was one point that I did have the dry heaves during the day but I thing that was from swallowing too much mucus. My throat has started to feel a bit better or at least to the point where I can talk more than one word answers if I use the spray bottle to keep my mouth moist. I think I over did it in the morning because not much later I had the dry heaves. Lasted about 5 minute and then I was fine. Its the same thing that occasional happens at night when I get up and the mucus all rushes down the back of my throat. Aside from that everything went well and I was ready to head back home at 3 in the afternoon. One effect that did hit me was tiredness. I napped a bit when I got back home and then went to sleep around 9:00. I don't normally set an alarm for the meds because as a rule I never sleep more than a few hours without waking up. In this case I slept straight through to 3 in the morning. Needless to say I will have to catch up on some feedings on Tuesday to make up for it. Still it felt nice to sleep that long.

Everything else is going fine. I am curious to see what the impact of this chemo will be. The first one was the worst. Part of that was due to the abdominal pain caused by constipation on the day of chemo and part of it was due to the shifting pressure in the sinus region as the chemo and radiation started to do their stuff. Also it took about a week to get dialed in on the nausea medicine. With the second chemo I was still in the first week of using the feeding tube and there were some adjustment issues to having the all liquid diet along with getting enough feedings. Still the impact wasn't too bad. With this treatment I have the feeding tube stuff dialed in, the pain and nausea medicine is all set and now the radiation treatment is actually different. Also there are only two radiation treatments left. (Big time Yippee! on that one) So for most of the recovery time for time for this chemo I will not be getting radiation treatment. Taken all together I am hoping that this chemo treatment will have the least amount of impact.

One last thing to note is that fatigue as a side effect hasn't really come back since the first treatment. I do get tired but then I just sleep. Fatigue was feeling tired but not being able to sleep. Hopefully the trend will continue and fatigue will stay away this time.

BTW did I mention that there are only two more radiation treatments left to go? Yippee!

Chemo III is a go!

2007-12-17T09:30:00.000-05:00

I am writing from the hospital and the blood work just came back with good results. My white count is in the acceptable range so chemo is on for today. Yippee!!

Note: I am not looking forward to the chemo but it is a major milestone. Also just a FYI this blog post was created using the wifi access and web browser on the Apple iTouch. It works pretty well as a portable web browser and I get to listen to music while surfing. :-)

Chemo No. 3 Take 2

2007-12-16T16:12:00.000-05:00

Chemo treatment number 3 is scheduled for tomorrow. Of course this will depend upon my blood counts. Hopefully they have recovered enough so that I will be able to take treatment number 3. This is the last of the major chemo treatments. There are still 3 more of the follow up treatments but the impact of those is supposed to be less. I am not looking forward to this last major treatment but I do want to get it out of the way.

At the same time only 3 more radiation treatments left to go. I don't think I have mentioned this before but during radiation treatments I can bring my own CD to play. No offense on the music track they run at the hospital but I definitely prefer bringing my own music. On Wednesday I will be finished with radiation. Yippee! With radiation treatments the weeks start off OK but by the time Thursday and Friday roll around I am just beat. Then I have Saturday and Sunday off and in general Sundays are not that bad. Of course come Monday its back to the radiation again. This week is different. Only 3 treatments and then plenty of days to recover. I have never had 3 days off in a row so I can't imagine what next weekend will be like. Now the chemo will help compensate for the lack of radiation but even with that I should start getting a bit better each day after the radiation treatments are completed.

If I can complete the chemo on Monday then by Wednesday of this week I will be finished with the major portion of the treatment plan. That will be quite a milestone accomplished. Also it means I can slowly start to get better. A major portion of cancer treatment is trying to keep the patient healthy while they kill the cancer. Now that I am almost through the worst I can look forward to the recover time. Hopefully 6-8 weeks from now my throat will have recovered from the radiation treatments.

Two new side effects that I am experiencing this week is tiredness from the low blood counts and radiation burns on my neck from the treatments. The burns on my neck are like getting a very severe sunburn where it starts to blister. This is one of the cumulative effects of the radiation treatment. With the change in treatment plans this last week the impact on the front of my neck has been reduced but the sides and back of the neck have continued to get worse. They have me using a prescription anti biotic cream that is used for second and third degree burns or getting skin grafts from skin burns. The plus side is that there are only 3 more treatments left and then those areas can start to heal. Right now the goal is to just manage the burns and try to prevent them from getting infected.