Merry Christmas, Good News about Jerry, and Book in Progress

It's 10am on Christmas Eve in Atlanta, and we are having unseasonably warm and stormy weather.  It's going to be mid-70s today with a tornado warning in effect, be in the high 70s for Christmas, and stay in the 70s for several days after. 

Many of you know about Terry's hand-painted annual holiday cards, but for those who don't, I scanned and inserted this year's card--a great multi-media image of Good Vibes with a bit of snow on it and under the rare Christmas full "Cold Moon" we'd be seeing, if it weren't 100% clouded over.  This won't happen again until 2034--I'm planning on being alive for it at 82, but might need some help finding it in the night sky, and remembering it the next day.

The idea behind the card is to celebrate our second best kind of Cancer Revenge ever--a place we can get away to and share with family and friends for years to come.  The best revenge of all, obviously, is surviving the Prairie Dogs for 7 years--all with such great support from Team Mike.

Team Mike came through again this week.  We learned yesterday that our friend Jerry had his surgery on Monday and is resting in the hospital.  We were told that the doctors think the surgery was so successful that he won't need chemo or radiation as followups.  Personally, I'm hoping he's back on his feet and working soon--I need a haircut.

However you say it, and however you celebrate it, please accept my thanks for helping me to see another Holiday Season as a cancer survivor.  FYI, I am going to write a book in 2016 about my journey through Cancer World, and I want Team Mike to be a big part of our story.  So, be on the lookout for requests to think back about how you contributed to the team effort along the way, so I can give you the credit you deserve--well, everyone except Nurse Kimmie, who will get her just reward.

Mike

Need Good Vibes for Jerry

Jerry L. cuts my hair, and Terry's, in his small shop in an ATL neighborhood.  On Monday, he told Terry that his recent colonoscopy revealed some areas of concern and that he was going to see a surgeon soon to hear his treatment options.  I spoke with Jerry yesterday to make an appointment for early next week, and to hear more about his diagnosis and treatment plan.  Things have developed faster, and he's now not taking any appointments for the foreseeable future.  We don't know any details, but we are alarmed.

Jerry and his co-worker, Tara, have been wonderful to me since my own treatments started, offering to come to our house or the hospital to cut my hair.

Please send your best Good Vibes to Jerry.  He is truly one of those few really "nice guys" you come across in life, so we want to give him any and all support we can muster from Team Mike.

I'll post more as we learn more--hopefully soon.

Mike

Time to Start Rebuilding this Brokedown Palace

Picking up where the last entry ended, there is a song written by Robert Hunter and Jerry Garcia that has haunted me many times during my stay in Cancer World.  It's called "Brokedown Palace" and like many Hunter/Garcia songs, it can have many interpretations.  My own is that it's a story being told by someone whose body has given out (thus the brokedown palace) and they are preparing for the inevitability of death:

Goin' to leave this brokedown palace
On my hands and my knees I will roll, roll, roll

Going home, going home
by the waterside I will rest my bones

After my surgeries last year and this year, I would quietly get very emotional when I heard this song, and often had to turn it off.  While I never thought that my death was close, the song did remind me that my body has been damaged in so many ways from seven years of cumulative side effects from chemo and radiation, and surgeries.  It is a truly brokedown palace in many ways:

--my left leg  is about 90% functional which causes me to wobble sometimes
--my left arm has a large scar from the 2015 surgery and is about 80% functional
--my left hand has restricted range of motion and reduced grip strength
--I can't raise my left arm laterally above that shoulder
--my left and right shoulders are not in balance
--my neck area has large areas of fibrosis and loss of sensation
--I have only five bottom teeth, all on the right side
--I have hair growing in my mouth, from the patch of arm skin grafted there this June
--I have a noticeable speech impediment, especially as the day goes on and I get fatigued
--I've had both cataracts replaced
--my lower face is disfigured

I'm sure there's more, but you get the picture.

But, the point here is not to feel sorry for myself, or to seek pity.  As my oldest brother Jim once told me "Any day you can get out of bed with both feet hitting the floor at about the same time, is a good day."  I can do that, and with the second dreaded PEG tube in the past, and regaining enough function to start exercising again, I can begin to rebuild this brokedown palace.  I know it will take a long time, and it will be a difficult road after seven years of physical setbacks and creeping age, but it's time to start.

But, there is another motive at work here.  One of the realities of life in Cancer World is that every major episode--be it damage from treatments, recovering from surgery, or (God forbid) a recurrence--takes an extreme toll on one's body and psyche.  Some people fight very hard mentally, but the accumulated effects on their body can sometimes not be reversed, and they just give out physically.  While I want to get stronger and healthier to feel better for its own benefits, I also want my body to be as ready as it can for the possibility that those persistent Prairie Dogs might show their ugly heads again.  If they were to surface again right now, I have serious doubts about my ability to fight them off.  I need to get rid of those doubts.

When all of this started--almost 7 years ago exactly now--I defiantly called my blog "Mike Metzler Beats Cancer" for good reason.  I was full of enough piss and vinegar to will my body through the coming ordeals, and I was determined to beat the Prairie Dogs into submission.  After these seven years, I know that I have not beaten cancer--it has changed my life and Terry's life in profound ways that will never end.  But, I have survived cancer for seven years and counting, and looking back--that was the more realistic goal to have

So, the best way to keep surviving and to be ready if the Prairie Dogs come at me again, is to rebuild this brokedown palace into a stronger, resilient structure.

mike

Tubeless (and Painless)

The only thing I was thinking about more than having the PEG tube out of my body was the sharp pain I had when the first one was taken out in 2009.  That one really smarted, and even more because I was not ready for it to sting so much.

So, this time I thought I'd ask for a local pain med (too early in the day for full-on opioids) and was getting ready to do that when the nurse said "All done."  Huh?

Turns out this was different type of tube, and once she deflated the little balloon holding it in place, it pulled right out--barely even a tug needed.  As Terry said, had we known that we could have taken it out at home ourselves--probably why they didn't tell us in the first place.

So, I'm feeling good knowing that I don't have to manage that intruding tube any more, and worry about accidentally tugging on it as I get dressed and undressed each time, or look at it dangling out of my tummy in the mirror every morning.  Believe me, there will be no post-partem blues with this!

A couple hours after getting back to my office I got an email from Terry, saying that I have an appointment with a doctor on Friday to start the consultations about dental work.  That will probably be a long and sometimes painful process, but it does mark progress and will get me closer to knowing what my long-term eating abilities will be.  I am resigned that my choices will be  limited from here on out, but anxious to know just what my options will be and to figure out how to stay at a safe and healthy weight going forward.

Today was a good day.  I'll savor that until the next round of work on my Brokedown Palace starts.

Mike

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

Flunked the Swallow Test

I was not able to pass the barium swallow test--too much liquid is getting down my airway, posing a potential aspiration situation.  The solution is to have a stomach feeding (PEG) tube inserted so I can take my liquid food safely and easily.  The good news is that the dreaded nasal tube will come out, but that is offset by what will be a long delay in getting off the liquid food.  Perhaps several weeks.

Once the stomach tube is installed, I can start PT to strengthen my swallowing muscles. There is some chance that I won't ever get back to a safe and functional level of swallowing, which will lead to more difficult decisions down the road.

This is a real setback.  Not so much for just failing the swallow test, but because it raises questions about quality of life down the road.  I just can't imagine life without green chili cheeseburgers, or even something as simple as a DQ Blizzard--but I am now a long way from even thinking about eating those things again.

As has been typical for 6+ years, setbacks like this one get me down at first--so be sure to send some extra Good Vibes our way.  But also true to form, we will get our game faces on and do everything in our power to work through this new challenge, and then hope for the best. As always, it sure beats the alternative.

More soon, once I have figured out how to get a Gin and Tonic down the stomach tube...

mike

Mixed Bag from the Doctor's Visit

Well, we had hoped to see the nasal tube, trach, stitches and staples go away today, but fell short of that goal.  The stitches and staples all came out, quickly and painlessly.  Rather than take the trach out, they put a cap on it to see how I handle fully breathing on my own for a week.  If all goes well, it will come out next week.  The big disappointment was the nasal feeding tube.  They could not do a barium swallow test today because that lab was booked all day.  They tried a swallow test using a camera at the end of a scope, but I could not tolerate the scope and the test had to be aborted.  They have scheduled a barium test on Wednesday, so two more days of the dreaded nasal tube being there.  But I can drink small amounts of water, to help me strengthen those muscles in the meantime.

Bottom line--disappointed but not discouraged. 

More soon.

mike

Need Team Mike Good Vibes for Tomorrow

As we've learned, progress in my healing is not measured by time.  It's measured by the removal of various "leftovers" that remain in or attached to my body following each surgery.  Some of this year's leftovers have been removed alreday, but three big ones are scheduled for removal tomorrow--the dreaded nasal feeding tube, the trach, and the countless stitches and surgical staples in my arm, neck, jaw, and mouth.

The stitches are not in question for tomorrow--they are ready for removal.  However, the status of the nasal tube and trach depend on on well I do in a standard swallow test.  If I do well on that, those things come out and I can start the progression of eating orally, even though I will have very limited options for weeks to come.  (I even paid attention to a TV ad for Ninja blenders yesterday).

So, please send your very best Good Vibes that things go well tomorrow and I will walk out of the doc's office tube-less, trach-less, and stitch-free.

Mike

Coming Back from Hell Lite

I described last year's procedure, hospital stay and home recovery as pure Hell--something that I hoped never to go through again.  So, I've been trying to come up with a summary description of this year's experience, and have decided to call it Hell Lite.  I know that is a mixed metaphor, but it does seem to fit, so I'll go with it.

While this procedure was every bit as long as last time, nearly 12 hours until they rolled me into the ICU, I was not put into an extended coma and managed to avoid seeing those terrifying 6-legged lizards (and Jeff Rupp, for that matter) in my sleep.  I did dream that I was handed down the task to write the next book in the Lord of the Rings saga, but every time I thought about the existing books part of my memory was taken away from me.  Still trying to sort through that dream, but at least it was mercifully short.

I was in ICU from late Friday until late Wednesday--again shorter than last time.  And, like last time, all but one of the Emory nurses were great.  The bad apple this time was not another Kimmee (who, as you may recall, scanned my billing band while I was using that same arm to urinate), and I had her for only one shift.  Other than that, nothing but superlatives to say about the nurses this time.  One of them, the ICU head nurse, has a good friend in common with us, and she is a GSU Nursing Alum.

Every day started and most days ended with swarms of young residents giving me a once-over to report back to Drs. Wadsworth and Roser.  Dr. Roser himself came by twice on almost every day.

While being told before that I could be in the hospital for up to two weeks, as early as Tuesday we got hints that I could be discharged by the weekend.  For us, that meant Sunday, but as the week went on, someone said "maybe Friday." We were doubtful at first, but it did in fact happen.  As I was walking on the main floor that morning, one of the residents told me that I got the fastest discharge ever by Wadsworth for this surgery.

OK, back to Hell Lite.  Last time they took my entire left fibula--this time they took a chunk of bone and tissue from my left arm, so not only was the "donor" wound smaller, I did not have to heal well enough to support my weight and walk--and had no leg cast to deal with.  There were no surprises in the OR, like last year's major infection and A-fib, so I had no complications to deal with beyond the planned surgical wounds.

I got moved out of ICU late on Tuesday, and walked to my new room on my own.  So, just two more days there, and all the chips fell into place for a Friday discharge.  I did come hone with a nasal feeding tube and trach, which have demanded a lot of attention, but nothing like the IV-antiobiotics a year ago.

But, this stay was not without a "signature" event in Hell Lite, and served to motivate me even more to bust out ASAP.  During the procedure I had a Folley catheter inserted which sent my liquid waste directly to a collection bag.  The Folley cath was removed on Monday, on schedule, but I was not able to urinate after that for 24 hours.  That caused me to need a straight cath inserted (you figure out the details) manually by "that" nurse.  The way she went about her business made it a  totally humiliating experience.  When she left the room, she warned me that it would have to be done again, and until I could pee on my own.  Fast forward 12 hours and I still haven't peed, so a different nurse comes in to do the cath again--while two other nurses are also attending to me for different things.  Rather than wait, she starts her work and knows I am mortified by the scene in my room.  Once she inserts the cath, she tries to calm me, gives me a wink and says "You can get your dignity back when you've left the hospital, but my advice is to take more of the meds that will help you pee on your own."  So, I ordered a double shot of FloMax right after and peed on my own about 8 hours later. 

The rest was Wadsworth discharge history.

mike

Hitting the road

I'm can't fix the rotation on this photo, but if can manage to see it, it's me ending my first walk yesterday.  I had hoped to say it was part of my Peachtree Road Race training, but I'm officially scratched from that.  Next year, for sure.

I am making good progress.  Sleeping well, less swelling, less pain in the arm.

That's it for now.

mike

Short one for now

Please excuse the typing but I have a rather large bandage on my  left arm to deal with.  We got home around noon yesterday and have spent most of that time getting the Frazier Court MASH Unit back in order.  While not as draining as last year, there is stll a lot to do.  If i make good progress most of this will end on july 6.  stitches and tubes out and trach removed.

i will post more soon.  as you might expect, some interesting stories came out if this second trip to Hell in 14 months.

In the meantime this link sums it up nicely and is  also my prediction for the opening song in tonight's historic Grateful Dead show.

https://www.youtube.com/watch?v=8YSTeJOxiaw

Thanks to all on Team Mike. feel free to call or email me now.  but no texts--if i don't do that with two thumbs, you got zero chance with one working thumb.

mike

The countdown begins....

Imagine my surprise when I showed up this morning in Mike's room in ICU and he wasn't there?  Somebody forgot to give me a call....

Sometime around 10 last night he got word he was being released from ICU and they allowed him to walk about 40 yards to his new room before midnight.  Once he was all settled in his new room he had a really good night with much needed sleep.

Shortly after I arrived he was evaluated by speech and swallowing and was able to graduate to using a speaking cap on the trach and I was trained on how to clean the trach and given a refresher course on administering his drugs through his nasal tube. Before I left for the day, the cast was removed from his arm, the wound vac and remaining drain were also removed.  

The plan is for him to be released tomorrow as soon as I recieve a refresher course on boulous tube feeding and home healthcare is set up.

Yippee! 

Day 5 in ICU and Counting

Mike continues to improve. He can talk if he covers his trach but was told to keep it to a minimum. Yea, right.....and it's beginning to look like he will be discharged from ICU Friday with a lot of home health care.   He took a long walk around the entire 2nd floor and will practice climbing stairs tomorrow.

Keep the good vibes and prayers going.  We're both tired and ready to settle into the next part of recovery.

Take care, Terry
PS....I'll let mike tell you about big brother who checks in twice a day and no it's not Jim or Dan.

Day 4 in ICU

Despite still being in ICU, Mike had a great day.  He was cleared to walk with assistance from PT and boy did he walk. One person was by his side making sure he didn't do a face plant and another assistant was dragging the portable oxygen tank and wound vac behind him. He managed to do two laps around the ICU unit before they parked him in his chair for the remainder of the day.

He's been cleared to move into a regular room, but as of 6:15pm a room had not become available so, I'm guessing he will remain in ICU until tomorrow.  Along with moving out of ICU we were told that the cast on his arm should come off in the next couple of days; the trach will be replaced tomorrow with one that would make it easier for him to talk; and there is a possibility that if he continues to improve at this rate he might come home Friday.

Keep your fingers crossed.....

Terry

Day 3 In ICU and Hopefully the last day

Sorry, this will be short.

Mike's third day in ICU went well.  He was able to sit up in a chair for 4 hours, which is 2 hours longer than he was told he needed to sit-up.  All of his vital signs were good, the swelling decreased even more so that I'm beginning to picture the Kirk Douglas cleft.

He's really tired, (me, too) so we are going to limit visitors until he's all settled in a regular room. 

Once again, thanks for all the well wishes, good vibes and prayers.

Take care,

Terry

Day 2 in ICU

Boring and uneventful sums up Mike's second day in ICU. All of the medical teams---ENT, Maxofacial, ICU, and orthopeadic are impressed with how good he looks. Even though he looks good they are following Wadsworths orders that he stay in bed with as little movement as possible until 8 pm Monday.  He's down from two IV lines to one. The Foley catheter was removed as well. I know....TMI, but we measure progress in the decrease in tubes and lines being removed from his body.  I counted three drainage tubes today, two in the neck and one in the left arm.  Nurse Michelle thought that those drains might be removed in the next couple of days.

He gets flap checks every six hours around the clock by one of several ENT interns. Their average age is 18, seriously.  This is the most important test they do all day and all it entails is a little pin prick on the outside and inside of his mouth where the skin tissue was grafted. If he bleeds all is good, no blood then back to square one.  Extra vibes and prayers are needed at 6am, noon, 6pm and midnight.  Set your alarm, please.

Mike is getting better at communicating with his body language even shooing one Doc out of the room when she told him that she really didn't have anything else to say because he looked so good. The poor, young, really young orthopedic guy made the mistake of mentioning that if he was still here in two weeks that they could do the follow-up visit in the hospital. Michael cocked his finger at his head as in "shoot me" if I'm still here in two weeks. The poor guy was so shocked that he looked at me and shook his head. I'm pretty sure we will not see him again.

Thanks to our niece, Mara, brother-in-law, John and good friend, Andy for visiting this afternoon and breaking up the day for both of us.


The good vibes, well wishes and prayers are really working so keep it up Team Mike!  Can't wait to see the cards start pouring in.  If you didn't read last nights post, I'm starting a funny, irreverent get well card contest. Mike will be the judge....

Take care,

On the other side of the rabbit hole....

What a difference a year makes.  The experience between last year's surgery and yesterday's surgery could have happened on two different planets. Although the day was long, everything went smoothly----both surgeons were exhausted but pleased with their handiwork.  Mike will have a Kirk Douglas cleft on his chin to replace the one that he lost last year.

The best news of all is the cast is on his left wrist instead of his right leg!

Stop reading now if you don't want to see the gory details.

Even though Roser and Wadsworth tried to prepare me and my sis-in-law, Aleisa for what he looked like, we were shocked. His face was really swollen with stitches running from the left ear through the original scar from last year which I expected, but there were additional stitches that they talked about, but didn't really register with us until we saw him later in ICU.

The affected bone was in the mandible, much smaller than they originally thought, so a small piece of the radial bone fit perfectly into where the dead bone was removed. Roser was very pleased that the native bone on the right and the transplant on the left from last year looked healthy.  The biggest issue was the fistula in his chin had gotten larger and the radiated skin on his chin had gotten harder so they could not just simply suture the two sides together.  One skin flap from the wrist covered the inside of the wound and the other was used to cover the gap on the outside in the middle of his chin. This necessitated additional sutures running from the neck incision around both sides of the transplanted skin and through his lower lip.

You can only imagine my surprise this morning when I showed up in ICU to find him awake and
communicating through hand signals, facial expressions and writing short notes on a pad of paper. He
has been seen by Roser and his surgical team, the ICU team and Wadworth's team this morning.  They've already removed the ventilator so he's breathing on his own.  The plan is to keep him in ICU for another two days then move him to a room on this same floor. Wadsworth says two weeks in the hospital but that could change depending on his progress.

Thank you to each and everyone of you who have kept us in your prayers, sent good vibes, kept your fingers and toes crossed and have kept the good thoughts streaming our way.  Keep up the good work because it's still going to be a long recovery. To help keep Mike's spirit up, I'm starting a funny get well card campaign/contest.  He loves getting cards---the funnier the better and of course sick, irreverent ones will work, too. You can mail to our home address.  If you don't have our address
contact me at terry.metzler@healthmpowers.org and I'll send address to you.

I'll keep posting daily until mike can post again.  Take care, Terry AKA Mikey's nurse

All Set for Camp Roser

T-minus 12.5 hours until I get my table in the Emory OR.

In addition to getting my head in the right place for what will happen tomorrow and beyond, I've had to make sure my ducks are in a row for being at Camp Roser (aka, Emory Midtown Hospital) for the next several days.  It's not yet known how long I'll be in ICU--at the mercy of the 6-legged lizards--and how long it will be after that before I can function even a little bit.  Terry did get me a larger white board this time, so I can express myself more fully while the trach tube is in and I can't talk at all.

Like last year's prep for surgery, we made a list of things to do and places to eat before our lives change again for the next several weeks.  We got out to see Beth Hart in concert on Tuesday, and that was a real treat.  The lawn is mowed, weeds have been pulled, and the back yard has been sprayed to ward off the swarms of mosquitoes we've had this year.  I had my last drink for many weeks to come, an ice cold Gin & Tonic.  Terry has finished the laundry so I can have clean undies for tomorrow--won't need those for long, but better to be prepared.

The most important pre-op decisions have been to get to as many of our favorite restaurants before I am sentenced to another long stretch of nasal feedings and liquid food for the next 3 weeks or so, and a soft diet for many weeks after that.  Some of the highlights:

Oysters on Cape San Blas
Tacqueria de Vicenzo for the carnitas with green chili grits
Cafe Lily for (shit, I can't remember)
Antico Neapolitino for pizza (ATL's pizza Mecca)

Sensational Subs for Philly Cheese steak
Grindhouse for Apache Burgers
Daddy Dz for ribs
Northlake Thai for lamb chops
Aldo's Italian for veal (tonight's Last Supper)

And, we made some great meals at home.

Somehow we missed having wings and beef on 'weck when we went to New York State--but we did find a great BBQ place and ate there twice.

During this tour it became more and more obvious that the surgery needed to happen, and soon.  My struggles to eat, chew and swallow have increased and it would not have been much longer before I'd have been on that liquid diet anyway.

If you are getting the sense that I'm just rambling on, and hoping that the clock will stop ticking, you are right. As much as I liked summer camps, Camp Roser doesn't have quite that same appeal.  But, as much as Terry and I can be, we are ready for this, and hoping there are no surprises once Roser and Wadsworth open me up and see what my jaw looks like from the inside.

As I wlll tell Dr. Roser, if I wake up and it's Sunday, and my left arm is bandaged--I'll take that as a "win."  If I wake up and it's next Wednesday, with my right fibula is in my right jaw, I'll be really pissed.  Especially since I'll need to miss the two Grateful Dead concerts on pay-per-view next weekend.

So, as always, we are asking Team Mike to send some extra Good Vibes that this turns out as well as it can, and that I come back from Camp Roser without any new anatomical configurations in my body.

Terry will post here when she knows more and can get something out to everyone.

See you on the other side...

Mike

Counting Days, Getting Ready for the Vortex

After two weeks at the beach, we were home for just three days before we headed to New York State for my niece Laura's wedding.  It was a great setting, and we had great weather--except for the frost on our first morning there.  I got to see my brothers, sisters, and extended family in one place since I can't remember when.  Best wishes to Laura and Mike for a long and happy life together, and we were glad it worked out for us to make it.

Now that we are home it's time to get our ducks in a row for the events on June 19th and beyond.  It looks like a week in the hospital, followed by 2 weeks at home, resting and enjoying my second trach tube and yet another nasal feeding tube.  Still no word about IV antibiotics and other horrors from last year's surgery.

Starting next week we are sucked fully back into the vortex with a series of appointments and tests leading up to the surgery date, and prepping our house to serve again as a field clinic.

After a while this just seems like a normal life to us--for six+ years now we've had precious little time to settle into any kind of routine and have no medical issues to deal with--just a constant stream of minor and major events that remind me every day that getting rid of cancer in my body has not meant getting rid of it in my life.  And, with this new chapter, I am now resigned to the reality that cancer will always be a part of not just my life, but Terry's as well.

I'll keep posting as June 19th comes around and then leave it to Terry to update the blog while I'm in my "Happy Place" in the ICU, hoping that those dilaudid-induced 6-legged lizards don't scare me too much.

Mike

It Ain't All SFL

After getting word about the date for the upcoming surgery and wrapping up the spring semester stuff Terry and I headed to Cape San Blas FL for two weeks of sun, sunsets, naps, walks on the beach, gin and tonics, and our newest food delicacy--smoked sloppy dogs (smoked hot dogs covered with Terry's great Sloppy Joe mix).  Hey, you get ready for a month of liquid food your way and I'll get ready my own way.

But, I do think that I have finally resigned myself to eating blended green gunk once I get out of the hospital in late June. I will just refuse to call them smoothies, buy a Ninja, put kale in them, fool myself that I am freaking happy about it, and that it let's me assume a higher moral ground over those of you who can chew and swallow solid, high fat foods with lots of flavor.  Make no mistake, I'll be jealous and pissed.

Anyway, I think the only way we can make you wish you were in our flip flops right now is to show you the view from the deck of our shabby beach rental.

Time for another gin and tonic.

Mike