Tuesday, December 7, 2010
As always negative is good with MRIs
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.
Friday, November 19, 2010
Dilation Procedure XIV... More of the same
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.
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.
Friday, July 23, 2010
Drilling a Relief Well
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.
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.
Saturday, July 17, 2010
What I have in common with BP
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.
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.
Friday, June 18, 2010
Operation Garbage Plate Update
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.
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.
Sunday, February 7, 2010
Dilation Procedure XII as Success
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.
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.
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