Almost Tubeless on Thanksgiving

Happy Thanksgiving!

The date for the PEG tube removal is set--this coming Tuesday afternoon.  It feels like I've been given another in a long series of Get Out Of Jail Cards, and I can't wait.  Even though I've  not used the tube for feeding in over three weeks, it's still there and in my conscientiousness throughout every day.  I know that its removal won't change my restricted choices for eating, but it will give me some psychological and physical freedoms that I've not had since the surgery on June 19th.  And, it marks a real achievement in my progress towards recovery from that surgery.

Even with that progress, we got a reminder last evening that this is still very dicey situation that can't be taken for granted.  We ordered out for Chinese food, as apparently did a hundred others in our area, which accounted for the nearly 90 minute wait to get a wrong order.  I ordered the veggie chow mein, thinking I could eat the rice noodles with no problem.  The veggies came, but with regular rice, not noodles.  Terry chopped up the veggies small for me, but with the rice mixed in, it caused a blockage in my throat that took over 30 minutes to clear.  I could breath with no problem, so was in no danger--but we were halfway to our one hour time limit of going to the ER when this has happened in the past.  Not a good memory.  But, it cleared and I was able to finish my dinner with a Boost--and some wine.

We had a great Thanksgiving dinner at Terry's family in Snellviille (where "Everybody is Somebody" and the seat belt usage record still holds at 94%).  I was able to eat almost everything, except the ham and turkey, but that was OK.  It was great to see a full plate of food in front or me, and eat every bite of it--even if it took about 45 minutes to finish.  If that's my future, I can handle it.

Speaking of the future, we met with Dr. Roser on Monday and he is very pleased with the way my mouth is healing.  He has referred me to another doctor who will assess me for dental work going forward.  The big question is whether I'll get a very long implanted bridge or a full denture to replace the lower teeth I've lost in the last two surgeries.  To be honest, I'm for whatever it takes to get me back to some semblance of regularity with chewing and swallowing.  I'm resigned to the real likelihood that I will never be able to savor a juicy steak, bite into a sub sandwhich, or eat a green chili cheeseburger whole again, or (and this one really hurts) enjoy a slice of Rosa's pizza without deconstructing it first--but I just want to figure out what my parameters will be, and move on from there.

In the end, I'm like so many other tens of thousands of cancer survivors.  We can never get back to our lives the way they were before we were infected by the Prairie Dogs.  The best we can hope for is to accept the "new normal" of whatever surviving offers and live our lives to the fullest extent possible.  There can be no better Thanksgiving than that.

Well, maybe there can.  Notre Dame beat Boston College at Fenway Park last Saturday, but the Fumbling Irish had 5 turnovers and barely hung on to beat a lowly 3-8 BC team, with not one, but two, true freshmen quarterbacks.  For its miscues (and silly all-green uniforms), ND has fallen out of the top four teams to make it into the national championship playoffs.

After how ND desecrated Fenway Park and its Green Monster, I'm also thankful for that bit of justice.

Right, Paully?

Mike

Go BC!

I am down to just two more days of eating without the PEG tube for my 14 consecutive day count.  That will happen on this Thursday.  I've managed to keep my weight where it was when this started--the other key part of this deal.

In some ways, this has seemed pretty easy.  The days have gone by pretty fast, especially when I was four days in without really knowing it (see last post).

In other ways, this has been another struggle in Cancer World.  Every bite of solid food has to be thought through, chewed (awkwardly) many times, and then carefully swallowed after several tries and a lot of water.  All that, without any of the food dripping down my chin and onto my shirt. If I try to eat too much in one sitting, I get mentally fatigued from having to pay such close attention to something that 99.99% of people give no real thought to.  That is now the price of living without the PEG tube.  That, and a greatly reduced selection of food choices, probably for the rest of my life.  If beer, wine and bourbon were solid foods, I'd be in a full blown funk right now.

Terry and I are going to Boston this weekend.  The main purpose of the trip is to see the Boston College v. Notre Dame football game--at Fenway Park!  Oddly enough, it's ND's home game--go figure how those little green arrogant bastards managed that.  BC is having a terrible year, and ND has high hopes to make the national championship playoffs, which would make an upset even more sweet to see in person.  ND has spit in BC's face by playing one of their 'home' games about 5 miles from the BC campus--and desecrating the Boston sports temple called Fenway Park.  It just ain't right.

 

But, I digress, so let me say it straight and simple: Fuck the Fighting Irish.

Right, Paully?

Ok--tirade over.  Back to Cancer World.

If all goes well, the PEG tube will come out before Christmas.  That will be a huge step in the right direction.  We meet with Dr. Roser next Tuesday, and hope to start a discussion about dental work to replace all of the teeth I've lost to ORN and surgeries.  That will not be an easy or painless process, but it will indicate some significant progress towards making eating more enjoyable and efficient.  I could really use that step forward.

mike

5 Days Tubeless, and Counting Up to 14

I was under the impression that I needed to get some official starting date for my attempt to stop using the PEG tube and that the PA would need to monitor my weight.  Turns out it was a self-monitoring deal, which I learned after four days of not using the tube for any feeding.  I still need to flush it with water every day, but that doesn't count against me.

So, yesterday was my fifth straight day of eating only orally.  If I can keep that up, my 14th day will be November 19th.  My weight has stayed steady for the last 5 days, but in order to do that I have to be very mindful of calories and be sure to eat every bite in front of me, even if it takes a long time.

If I can make it to the 14 straight days on Nov. 19th, I can then keep going through the Thanksgiving holiday and hope to have the tube removed in early December.

So, please send good vibes, and any calorie-dense foods you can deliver to me safely--I'll take care of the ice cream, quiche, pie, etc. on this end.

By the way, my Grateful Red Chili won 1st place last week in the Chomp & Stomp cookoff in ATL, with nearly 100 entries.

Life is Good!

Mike

GCCB, sort of, and gearing up for the next test

At dinner tonight I took a step towards getting back to my culinary Nirvana--a green chili cheeseburger.  I grilled GCCBs for Terry and myself and was able to eat about half of it, sans bun.  I am pretty much resigned that I'll never be able to bite down on a burger and a bun at the same time, ever again--but I am still hopeful of being able to eat a GCCB patty by itself, after cutting it into very small pieces. I was able to do that tonight, but had to stop about half way because my jaw got tired from the chewing, and Terry wanted to do the dishes sometime before 10 o'clock--about when I would have finished it at the pace I was going.

But, it sure tasted good, even if it wasn't the full Monty of a GCCB.

The bigger news in all of that is I have not used my tube for feeding since breakfast on Friday--it's now Sunday night.  I have to inject water into it every day to make sure it doesn't clog, but I've managed to eat almost 3 days of meals orally, and have expanded my food options quite a bit.

This is not the start of my official trial to eat 100% orally for 2 weeks, but it has given me confidence that I can have a go at it a lot sooner than I first thought.  I will contact the doctor's office this week so try to get the OK for that to happen, and if given the green light, start my two weeks as soon as possible.  I have a  pretty good idea of what I can tolerate and what I need to avoid, and think I have plenty of healthy options that will let me meet my caloric and nutritional needs during that two weeks, and beyond.  We are traveling the weekend before Thanksgiving and it would be great not to need any liquid chicken on that trip.

So, stay tuned, and I'll let you know when the 2-week clock starts and ask for your Good Vibes to help me through that next test.

Mike

1 Day Without Liquid Chicken

Without really planning to, I went the whole day yesterday with no liquid chicken.  Terry made me pancakes for my Birthday Breakfast--lots of butter and lots of syrup, but if that's what it takes, I'll do it ;)

A fruit blend for lunch, and a yogurt snack when I got home.  Then, for dinner the best thing I've eaten since June 18th--quiche with green chilis in it!  I can't eat the crust yet and it's not a green chili cheeseburger by any stretch, but it was delicious in its own way.

Then, of course, the obligatory 2 glasses of wine while watching the Falcons get the crap beat out of them by the Saints.

(Funny story from the doctor's visit the other day.  The intern examined my mouth and asked me what I had for breakfast that morning--grape juice? Gatorade? He said that my tongue was purple.  I told him, Nope--red wine.  He paused a bit and I then told him I had it the night before--not for breakfast.  He laughed.)  Hey, cancer survivor's humor...

This is not the start of my two weeks to get by without using the feeding tube, but it did show that I can shift more of my eating from the tube to oral feeding--and maybe faster than I thought.

Mike

Passed with Flying Colors!

Meryl, the PA gave a big smile right after I took the first swallow of the test, and said--"no aspiration and good movement of the test liquid."  That stayed the same for the rest of the short test, and the results were very encouraging, and more than a bit relieving after several weeks of lingering doubt.

So, I am safe to start eating more kinds of soft food--even foods that need a bit of chewing before they can be swallowed.  My chewing is still limited, given that I have no teeth on the lower left side of my mouth, and it's difficult moving food around with my tongue--but if I can chew something well enough to get it into little pieces and wash it down with water, I am cleared to do that.  Coming up next--scrambled eggs, syrup-soaked pancakes, tuna salad (hold the celery), fish, and pasta with lots of sauce on it.  Who's better than me?

Meryl says that I can start to wean myself off the liquid chicken as long as I can maintain my caloric input to keep my current weight. I am a very long way from eating green chili cheeseburgers again, but that could happen down the road.

Next goal--getting rid of the stomach feeding tube.  In order for that to happen, I need to not use it for two weeks straight, while not losing any weight.  I am a very long way from that goal--maybe several months--but I am now cleared to start working on it.

As always, our thanks go out to Team Mike for the many Good Vibes and well wishes going into the test today.  You came through again with the best birthday (tomorrow) present I could have asked for.

Mike

A False Alarm and Cramming for my Swallow Test

About 6 weeks ago I felt a very tender spot  in the right side of my mouth, and flicked out a tiny piece of dead bone. It was on the taurus--that bit of bone that protrudes out inside some people's mouth.  I happen to have very prominent tauri. I thought nothing of it until a second spot occurred right after that, a bit bigger than the first.  What crossed my mind then was that ORN was starting on the right side of my mouth.

We got a fast appointment with Dr. Roser, who examined the exposed bone and said that its location is not cause for concern.  Apparently, the soft bone of the taurus makes it a likely candidate for exposed bone--yet another lingering after effect from the radiation treatments.  It may look like ORN, but really isn't.  So, we came away very relieved.  But, with all we've been through, even a false alarm is not a good thing.

Next up--my swallow test on Wednesday.  I've been doing my exercises and eating a bit more food orally to get extra work on my swallowing mechanisms.  At one point I was not optimistic, but lately think that I'll do OK.  No green chili cheeseburgers any time soon, but with all the food I've eaten orally lately--and no problems--I might be able to start shifting more of my eating away from liquid chicken.

Please send Good Vibes for Wednesday, and I'll post as soon as I can.

Mike

Working the Plan

It's been a couple of weeks since my last post, so I thought I'd catch you up.  Well, nothing to report.

I'm doing my swallowing exercises on a daily basis, almost always getting in the 5 sets they want me to do.  I've finally found the one good thing about dealing with ATL traffic to and from work--waiting at red lights gives me a chance to do my exercises without being distracted from my driving.

I have started to make more blended meals (I don't use the trendy s-word) and enjoy them a lot.  We went out to dinner last night and I had a big bowl of pureed Mexican chicken soup--definitely the most enjoyable meal I've had since June 18th.

The biggest challenge with eating anything other than my liquid chicken is figuring out how well I'm doing with my daily nutrition.  For all its lack of appeal, three meals a day of liquid chicken gives me exactly what I need for calories and nutrients.  If I substitute for it with blended food, it becomes a guessing game.  So as much as I'd like to eat more orally, I am sticking to liquid chicken for the majority of my meals.

Please keep the Good Vibes coming, and add some extra ones to get the damn rain to stop here!

mike

Extra Good Vibes needed

I met with Dr. Wadsworth's physician's assistant last week and got a very bad bit of news about my progress in the food swallowing department.  While I have been able to eat soft foods like yogurt, pudding, and recently--smoothies, I am making no progress towards being able to eat solid foods.  I knew that, but what Lauren told me next really got my attention.  The 'window' for showing signs of getting back to eating solid foods is closing for me.  If I don't make some significant progress in the next month or so, they will start to talk about Life Plan B for me to get food into my body.

While no one really thinks much about what happens to a bite of food once it leaves the palate and starts down to the stomach, it's really a very complicated and intricate process, involving a lot of small muscles, and a number of anatomical structures working in a strict sequence, all coordinated by nerves in the tongue, mouth, throat, neck, and esophagus.  Bottom line for me--almost every one of those parts has been compromised by radiation and the surgeries in the past year and a half.  As Lauren told me, sometimes those functions just can't recover from the accumulated effects.

And, a little of what I can swallow leaks into my windpipe--called aspiration.  There is a reflex action that occurs when food goes where it shouldn't--we gag and cough when it "goes  down the wrong pipe."  While not a fun thing, it does show that the body is aware of the problem and is reacting to it.  I don't have that reflex any more--thanks to radiation.  So, unless the aspiration stops, I'm at risk for infection in my chest and lungs.  There are only two ways to stop the aspiration--get stronger and more efficient at swallowing food, or eat no food orally.

I have my next swallow test on October 14.  Lauren thinks this will be the best indicator of my ability to eventually progress past more than soft food, by comparing it to my previous tests.  If there are no signs of progress, then they will start to talk about Life Plan B--how to go the rest of my life with eating only liquid and very soft foods--basically what I'm doing now.  While I've been accepting of the feeding tube and freakin' smoothies as a temporary eating plan, the thought of doing that for the rest of my life (and the possibility of infections from aspirations) scares the hell out of me.  This is a huge quality of life situation.

You know what's coming.  We need Team Mike to send more and stronger good vibes leading up to the October 14 swallow test.  I have doubled up on my swallowing exercises to give my body every chance to show signs of improvement.  I know that if I show some improvement I won't leave the test and gulp down a green chili cheeseburger.  I am hoping at the most for some sign of improvement that will keep alive the hopes that I can eventually return to the kind of foods I could eat before the surgeries happened.  To me, that would be enough of a miracle.

mike

First Stay at Good Vibes, Terrible News About a Friend

The cosmic joker who has been messing with me for 7 years now must have read my recent blog where I declared our new vacation home in the GA mountains as "Cancer revenge" and decided that it was time to show me how wrong I was.  I can run, but never hide from the Prairie Dogs for too long in my life--it seems like they will always remind me that I have not beaten cancer--I've only survived it.

Terry and I were enjoying our first stay at Good Vibes, working hard on making it our own, and really liking the night sky we got.  It gives Deck Time a whole new meaning.  On Friday I got an email that a colleague and friend from Cal State Northridge had been taken off life support--the next day I got a follow up email that he had passed away.  Here is the short announcement from the CSUN President's office:

It is with very deep sadness that we share the unfortunate news that Faculty President and Professor of Kinesiology, Dr. Shane Frehlich, passed away Friday evening after his long battle with Acute Myeloid Leukemia.  Please keep his family in your thoughts and prayers during this sad and difficult time.   His wife Dianne, his 3 year old sons Max and Miles, and his 11 month old son Jonas appreciate all of the love and support the CSUN faculty, staff, and students have shown them these past couple of years.

Dianne Harrison, President

(I found this longer announcement today):

http://sundial.csun.edu/2015/09/csun-professor-shane-frehlich-loses-his-battle-with-cancer/

I knew Shane for many years, mostly as members in the National Association for Kinesiology in Higher Education.  He was a leader in NAKHE and was definitely on a path to be elected as its President before too long.

About 3 years ago, just before his twin sons were to come home after many months in the hospital due to premature births, Shane was first diagnosed with Leukemia.  Shane talked with me a few times about Cancer World. He fought really hard to go into remission after about a year, and to return to his work at CSUN.  He was feeling well enough about the future for he and Dianne to have their third child last year.  I thought that he was well on his way to a long life as a cancer survivor, only to learn the terrible news this weekend, which was a huge shock to me.

There are very few genuinely good people in this world, but Shane was one of them.  He was a great family man, a respected professor, a good citizen of NAKHE, and a friend to all he met.  Anyone who spoke of him would always start or end with "He's such a nice guy."

(I found another story today):

 http://www.gofundme.com/FrehlichFamily 

The GoFundMe page is there for the story, not to solicit donations.

Beyond the fact of Shane's death from cancer, his passing has caused me to re-think my own current condition.  Since the jaw surgery in June I have found myself often bemoaning my condition and fighting off anger--thinking more about what I can't do and have lost, rather than what I am still able to do.  I was starting to forget my own motto that "It sure beats the alternative."  Well, the 'alternative' slapped me in the face in the form of Shane's passing,  and has caused me to once again be thankful for so many things I still have as a cancer survivor--a loving and supportive wife, great family and friends, a rewarding career, and yes, even that yucky Isosource I inject into my tummy three times a day.

While we were having lunch yesterday, I stole one of Terry's french fries just to see if I could eat one bite of it.  I was not even close to being able to swallow it--but I sure could taste it!  More evidence that without that yucky Isosource liquid, I'd be unable to function at any level short of nursing care at home.

This has also reminding me that my worst fear is that I will have to face another direct battle with the Prairie Dogs, as Shane did and lost.  As long as that doesn't happen, I know I can handle the rest of what Cancer World holds for me.  As my brother Jim once told me, "Any day you can get out of bed and both feet hit the floor at about the same time, you're doing OK." 

That will always beat the alternative.

Rest in Peace, Shane.

Mike

D+ on the Swallow Test

The results of yesterday's swallow test were about as I expected them to be.  I am able to swallow a bit better than the last time, but am still having some fluid go down my windpipe and into my lungs.  I have been given the OK to eat very soft foods like yogurt, pudding, ice cream, etc., and can drink more Boost during the day.

The Physician's Assistant who gave me the test was hesitant to give that OK, but said that I need to start using those muscles more for actually swallowing food, and not just with my exercises.  She also saw some anatomical issues in my throat that are causing the reduced efficiency  with my swallowing.  She was going to show the test video to Dr. Wadsworth to get his opinion.

We celebrated this bit of progress by going out for dinner last night.  I order the veggie soup--pureed, of course, and was able to eat a little of it.  The bigger challenge was not the thickness of the soup--it was the spiceyness of it--or at least what I thought was spicey.  When Terry tasted it, she said it was a bit peppery, but not at all spicey to her.  So, not only does my food need to be very soft, it needs to be very bland, for now.

At home after dinner I had a little bit of plain vanilla ice cream, which I enjoyed a lot--both for the taste and the coolness on my throat.  Rocky Road and Chery Garcia flavors are off-limits for sure.

So, I passed the test enough to be cleared for a bit of progress, but am a long way from being able to sustain myself with oral feedings.  But, it's a start, and that's all I can ask for today.

Mike

Next Swallow Test This Week -- Need Good Vibes

I have my next swallow test this Thursday.  I know I'll do better than the last one, but not sure if it will be good enough to get the OK to start on soft foods again.  I have been working on my swallowing with the exercises I was given, and by drinking some Boost and a pale ale every once in a while.  I know I can swallow liquids pretty well (I have lots of experience with pale ales)--it's a matter of none of the liquid going down my wind pipe to risk aspirating and a possible pneumonia.

So, while I'm practicing in the next few days with more pale ales, I need Team Mike to send some Good Vibes that I can pass this test well enough to start back on soft foods.  That would still put me many weeks away from being able to sustain myself enough to have the PEG tube taken out, but it's the first step in that direction.

I'll post as soon as I can after the test.

Mike

Seriously?

From time to time I am sure that some cosmic entity is just having a big joke at my expense.  Maybe it's Karma coming around to kick me in the ass, or maybe I'm now just fodder for someone's sick sense of humor.  Either way, if the joke is on me, I've been shown three more examples of it recently.

The last time we went to Dr. Roser's office, his head intern took a look into my mouth and commented that it's healing really well, and I have hair growing in there.  For a while I thought what I was feeling with my tongue were the remnants of stitches that had not fallen out yet.  Nope--the skin taken from my arm (now in my mouth) is producing a nice blanket of hair follicles.  To add more insult to this, the patch of skin that is now under my chin is from the arm area that did not have hair on it--so if I wanted to grow a beard to cover up my external stitches, that can't happen.

Seriously?

Two days ago Terry and I started my evening tube feeding, only to discover that my PEG tube was clogged, so I could not take in any water or liquid chicken.  We tried all evening to get it unclogged, but no luck.  So, yesterday we had to go into the clinic to have a nurse clear the tube, which took all of about 1 minute once she started.  I had not "eaten" in 24 hours by the time we got home to do a feeding with the cleared tube.

So, the cosmic entity that has fated me to the PEG tube for several months had to have one more joke on me to clog the thing so I could not even take in my daily doses of liquid chicken.

Seriously?

We've also discovered another "gift" from the PEG tube feedings.  Seems that my palate can pick up the little bit of aroma the liquid chicken has, causing me to salivate heavily like one of Pavlov's dogs as the food enters the tube. So, as the food goes in, the drool comes out.  I'm salivating now just thinking about it.

Seriously?

mike

Mmmmm...Tastes Like Liquid Chicken

We have now settled into a daily routine for my care and maintenance, and we are both getting back into the swing of things with our jobs.

Terry has started her fall schedule of school programs with HealthMPowers and I've been to my office a few times, soon to start getting ready for fall classes.

The biggest and best development has been my ability to inject my water and liquid food directly into the PEG tube, which takes only about 15 minutes per "meal."  I use a product called IsoSource, which looks like a very light and thin chocolate milk and has a neutral kind of flavor that I can get a hint of in the feeding process.  Interesting stuff--it provides me with all of my caloric and nutritional needs, but with none of the enjoyment of eating food.  There is also no food prep or cooking to do--which I also miss.  Just pop open the little containers, pour the IsoSource into a large cup, draw it into the large syringes, and inject it into the tube.  I also miss being able to share the same meals with Terry, and going out for dinner--which we did 2-3 times a week.

To help a little, I've done a bit of cooking for Terry recently, which gives me some of the enjoyment of meals at home, but it's a far cry from the real deal of prepping, cooking, and eating the same meal together.

It looks like I'll be eating only Liquid Chicken for at least another month.  I have my next swallow test in 3 weeks, and even if I pass it, it will be a very long and gradual progression from 100% IsoSource to a sustainable level of oral eating.

As always, it sure beats the alternative, so no whining from this boy.  I'm getting stronger every day and ready to gear up for my last full year of work.

Mike

Cancer Revenge, Big Time

As I was completing my treatments in 2009 I composed a list of things on a Cancer Revenge list--things that I wanted to get back onto my life that cancer had taken away.  So far, only one thing on that list has not happened--being able to SCUBA dive again.  I was close to getting back to diving last year, but the jaw resection put a hold on that.  I have not given up on the idea of diving again, but if it's  going to happen, it's going to be at least another year off.

The items on the list are important by themselves, but the real purpose of the list is to acknowledge that life can go on after cancer, and that a cancer survivor can get back to many, if not all of the things they enjoyed before getting their membership card to Cancer World.

For many years Terry and I have enjoyed going up to the North GA mountains to spend time at Jeff and Deb  Rupp's' cabin, and then their ostentatious Rupp River Resort.  At some point we decided that we'd like to keep our current home as our primary retirement residence, but also have a place of our own up in the mountains.

A couple weeks before the June surgery we spent time looking for such a place in the Ellijay area.  After looking at 15 or so properties we still had not found the perfect place--until Terry did some searching on her own.  So, two weeks ago we took a day trip to look at a place that looked liked "it"--and lo and behold, it was "it."  We put in a bid, which has now been accepted and we hope to close in early September.

Yes, this IS way better than us!  But, more importantly, it is another way to say that "Living well is the best revenge" against the Prairie Dogs, chemo, radiation, ORN, surgeries, Nurse Kimee, and straight catheters.

While enjoying our first deck time in several weeks last evening we tossed around some ideas of what to call the new place.  Of course, I lobbied for "Terrapin Station," and Terry thought that was a good one.  Then, she asked, How about calling it "Good Vibes"?  Perfect!  It ties in a lot of things that helped us get to a place where we could get the house and enjoy our time there in the years ahead.

So,  Good Vibes is now prominent on our Cancer Revenge list.

Mike

Coming Out of the Vortex

While I will never leave Cancer World entirely, I am starting to see the exit route out of this current vortex--the one I entered a few weeks before the June operation.  Last evening Terry and I did some deck time, and I was able to slowly sip about a half can of Dale's Pale Ale. Terry and I had a nice walk this morning, and I was able to complete my breakfast feeding in about 15 minutes, now that we can inject the liquid food into the PEG tube, instead of depending on the pump or gravity drip.  We were able to spend some time this morning working on our new garden, trying to wrestle it back from the bugs, squirrels, and other critters that have tasted a lot more of our produce than we have so far.

So, except for the breakfast gig, this is looking and feeling like any other normal Saturday morning in July--a sure sign that we have turned the corner out of Hell Lite. My online cancer support folks call that the "abi-normal" life of a cancer survivor. I call it Cancer Revenge.

This is not to say that I am back 100%.  My left arm and hand are about 75% functional, and at risk for injury, so I have to be very careful with how I use them.  My swallowing is getting better, but still a long ways from eating food orally.  My speech is still very weak and unclear--I mumble a lot.  The new surgical scars around my mouth also cause me to drool some.  Some of you might be chuckling, saying that mumbling and drooling are not new for me.

I can buy that.

All signs indicate that my mouth and jaw are healing well, so we are now in another wait-and-see period to know when the next part of my reconstruction can start--the dental work.  Probably another 6 months.

Now that the end of this vortex is in sight, it's time to award the winners in the "Get Well Card" competition that Terry started while I was in the hospital.  Before I say who won, it needs to be said that many of you are very disturbed people with very twisted senses of humor.  That's to say--our kind of folks.  Your cards did the trick to give us a lot of laughs at a time when we needed them, and to keep up the idea that one of the best ways to fight cancer is with humor.  Thanks.

So, with that, the winners are Greg and Gena, for their card "20 fun things to do when recovering from surgery."  The card itself was a hoot, but their added comments put them over the top in the competition.

We will stash this set of cards away with all the others we've gotten in the past 6 years, and use them in a chapter of the book I will be writing about our journeys in Cancer World.  I have a publisher for the book, which will be based largely on the blog entries. At some point I will ask anyone on Team Mike who wants to contribute to the book to send something along for a chapter devoted to all the love and support we've been given since all of this started.  More on that later.

In the meantime, time to get back to our abi-normal Saturday, and to taking more steps to get completely out of the this current vortex.

Mike

Out of Nose Jail

Monday's procedure to take out the nasal feeding tube and insert the PEG tube went well, followed by an excruciatingly boring stint in the hospital until we were discharged yesterday at 3:45 pm--to get to, you guessed it--a 4pm appointment with Dr. Roser.

I have been able to tolerate a huge number of things in the past 6 years that would make most people throw in the towel--pain, swelling, straight catheters,chemo,  radiation, and much more.  All along the only things that have made me shrink and squirm have been the insertion of anything into my nose or into my throat.  So, you can imagine how much discomfort I was in for 4+ weeks with the nasal feeding tube pushed down my esophagus and dangling out of my left nostril.  I could feel every inch of it, and a hundred times wanted to yank it out for just a few minutes of relief.  The only thing that kept me from doing that was knowing they would have had to insert a new tube in its place to keep me fed and hydrated.

At the very end of the procedure on Monday, as I was being weaned off the sedation and starting to hear things around me, I heard the doctor tell someone to take out the nasal tube, and a few seconds later it was gone.  My body wanted to give out a big yell of relief, but of course my brain and my body were not working together at that moment when I was released from "Nose Jail."  So, a silent "Thank you" was made, and Terry and I celebrated my release once my head had cleared in the post-op room.  We can now actually kiss again (still no puckers for me), rather than do our improvised forehead and nose rubbing.

In the hospital I was still attached to other tubes and IVs, so was still not feeling totally unconstrained.  But, I left the hospital with only the new PEG tube in my stomach, and as I walked over to Dr. Roser's office, it felt like a set of heavy chains had been taken off my body.

We devised a torso wrap that would protect the PEG tube while I was in bed, and that allowed me to have my best night of sleep since June 18.  I didn't have to sleep on my back, or use the wedge pillow to prop me up.  We went out for a short walk this morning, the first without the nasal tube--and it felt really good.  Once our oppressive heat spell breaks, I want to do a lot more of that.

But, "It's always something..." and there are a few problems with the PEG tube and accessories.  We don't have the proper connections for a faster kind of feeding, so it's still very slow and tedious.  Hopefully they will be delivered today.  Until then I need to be tethered to the feeding pump for over 4 hours a day.  I can still do some things while feeding--like this blog entry, but my daily planning still revolves around that tethered feeding procedure.

But, I am enjoying my release from Nose Jail, and after a good night's sleep feeling the best I have since the start of Hell Lite almost 5 weeks ago.

Mike

What A Long, Strange Day it Was

To make a long story short, the plan to take out the nasal tube and insert the PEG tube didn't happen today.  All along we were under the impression that it would involve a full OR set up and a general anesthetic protocol, as it did the last time I had a PEG tube inserted.  They have to take extra precaution to make sure I have a backup air supply during the procedure.

When we arrived at Emory around 11 this morning, we were not taken to the OR admit area (Sign #1).  Rather, we were taken to a sort of catch-all area for minor surgeries--mostly out-patient jobs.  Rather than being seen first by an anesthesiogist, we were seen by someone from the radiology department (Sign #2).  He asked a long series of questions that didn't make much sense, and some of our answers caused him to consult with someone else 3-4 times (Sign #3).

Terry asked a tell-tale question about how I would be intubated during the procedure (that's the air supply issue) and he admitted that I would be under only mild sedation--not general anesthetic (BIG Sign #4).  That led to more consultations and an eventual decision that this had to be done in the OR and under general anesthesia.  That's the first good news of the day.

The next good news was that they could do that correct procedure today, followed by some news that it would be several hours before an OR and anesthesiology team could be available.  That was around 1 PM.

Five hours later we were informed that they had a heavy schedule of emergency procedures in that OR, and that mine would be postponed to a later date.  So, we finished up our business there, I got dressed, and we headed home.

The procedure has been placed on the schedule for 6:30 Monday morning, so we have a definite time, place, and surgical team for it.

The long day of non-events was worsened by the fact that I had not eaten since dinner last evening, and that Terry was freezing her ass off in the holding area.

The whole thing appears to be a bad series of poor planning by the surgeon (who should have known the signs), and the unanticipated need for so many emergency procedures while we waited for our turn.

So, postpone those Good Vibes until Monday morning, and we'll keep you posted once this gets done.

Mike

There is a Plan, but it Ain't Free

Slowly but surely a plan has now been made to rid my body of all but one tube.  We met with Dr. Wadsworth yesterday.  He took out the trach and covered it up with a small bandage that should not be needed after 10-14 days.  He also declared the left arm healed well enough to not need the splint or bandage.  But, I do put on a bandage when I'm out of the house so I don't scare anyone who might see the big scar.  He is very pleased with all parts of last month's procedure and think I'm healing very nicely.

There is also a plan to take out the nasal feeding tube and replace it with a direct tube to my stomach (called a PEG tube).  I will not be able to eat orally for several weeks, so this will allow me to expand my food options beyond the liquid food.  But, that progress comes with a price.  The PEG tube will be inserted tomorrow, but I will need to stay overnight in the hospital so they can be sure it's working properly and can tell me how to get a green chili cheeseburger through the tube.

So, time again for more Team Mike Good Vibes to help me through the tube insertion procedure and to give me the calmness, maturity, patience, and overall state of mind to endure yet another night in the hospital without going freakin' bonkers.

Hint, send more Good Vibes for the latter stuff...

If that fails, send Valium--lots of it.

mike

On Hold in the Vortex

No word yet when the PEG tube will be inserted.  We were told it would be this week, but that seems to be a fading chance.

The trach is scheduled to be taken out on Wednesday, but that could be pushed back to be done the same time as the PEG tube--they might need the trach in to use as the breathing airway for the PEG tube procedure.

It's been really hot here, so there have been few opportunities to get out for walks in the mornings, before the heat and humidity make that impossible.  And, with needing about 5 hours a day for feeding and wound care, I am housebound way more than I'd like to be.  In fact, I'm bored shitless in the current vortex of Cancer World.  I can work a little, but my typing is limited due to the splint on my left arm.

What I really need is a very large "Breaking News" story on CNN--one that will last and stay interesting for several days.Where's the OJ trial when you really need it?

Once the PEG tube is in, and the trach comes out, I'll have more options, but for now, I am stuck in a long cycle of "Ground Hog Days" here at home.

More when the cycle changes...

Mike