Busload of Faith

Now that I am eating real food, I think the recovery is getting to the point of being a little boring.  With my new, smaller stomach, there are some lessons that I have to learn. I have to figure out what NOT to eat and how much to NOT eat.  I've already had a couple of painful lessons that no one really wants to hear about, and I don't blame you.

I'm also working on getting my strength and stamina back.  It has been coming along slowly but surely.  None of this stops me from complaining that it does not come fast enough.  That is when I know I am being ungrateful for all the work and support I have been honored to receive.

My next appointment with the surgeon and the oncologist is not until June.  Therefore, I am closing the doors on the "Waiting Rooms."  I'd like to wrap up this section of the blaug giving my heartfelt thanks to all the Doctors, Nurses, Technicians, Assistants, Aides, Volunteers, Family and Friends that have helped Dottie and me make it through this harrowing time.  It has been one hell of a ride.

What next?  We have a trip scheduled for Fort Pickens (Gulf Shore) for early May.  Well deserved Beach Time!  Can't wait.

                    Dinner with friends at Peg Leg Pete's, Pensacola Beach



Let us not forget...

Apropos song to sign off with…
  in honor of Lou Reed who passed away last year and…
      making it through life's trials,
 "Busload of Faith."

https://www.youtube.com/watch?v=qNZm89wLaBw

And the Doctor said...

We went to see the surgeon last week for the follow-up to the surgery.  His waiting room was the one that inspired the heading for this Blaug.  It is usually well stocked and always seems to have at least one talkative person.  It did not disappoint, in that it was somewhat annoying.

Anyway, we were hoping he would say it was time to pull the tube (J-tube, that is).  We were called in and led to an exam room.  While we were waiting for him, we came up with different scenarios on what he would say.  He showed up fairly quickly. We looked towards him, and the Doctor said, "No more monkeys jumping on the bed."  Sorry, I couldn't resist.  That is one of Lucy's favorite songs.

He pulled the tube.  It was quick and fairly painless.  He had seen the swallow test results and said I had NO dietary restrictions.  The one curious thing he did was to ask me to demonstrate how I tucked my chin while swallowing.  It was the least I could do for him.  I lowered my head and swallowed.   He also said that as soon as I was off the Vicodin, I could drive.

When Dottie and I left the office, we looked at each other, smiled and high fived.  Another step (big one) towards recovery.

Unfortunately, there are plenty who are far from recovery.  My niece and her husband have a son, Jack, with Cystic Fibrosis (CF).  This is a devastating disease that they struggle with every day.  I ask my friends to consider donating to Jack. Check out this link that talks about the upcoming "Great Strides" walk in St. Charles and has a picture of Jack.

http://fightcf.cff.org/site/TR/GreatStrides/38_Gateway_St_Louis?px=1215735&pg=personal&fr_id=2088

Damned If You Do...

After 2 weeks of taking various foods by mouth, I was given a 2nd chance at the swallow test at MoBap (hospital).  Things had been going okay in practice, but I was definitely concerned what the test revealed.  While sitting in front of an X-ray machine they had me swallow some Barium infused pudding and liquid.  Delicious!  That was just like the 1st test.  This time I also had some graham cracker pieces dipped in the pudding.

The X-rays showed my Epiglottis did not move much.  When swallowing, the epiglottis normally folds down to help prevent food from going into the trachea.  The Speech Therapist administering the test said that my swallowing muscles were now compensating for the "stiff" epiglottis.  That was the good news, however there is still risk of aspiration because of this problem.  I was told I needed to wash solid foods with liquids and also tuck my chin while swallowing.  These 2 things seem to be the key for reducing the risks.

If you ever have a meal with me, and you see me bow my head (over and over), consider it a prayer of thanks to the powers that be, for letting me eat through my oral cavity instead of my Jejunostomy Tube.  It tastes much better that way.

Speculation is that my epiglottis was affected by previous radiation treatments from my Hodgkins disease adventures.  It may have been faulty for quite awhile.  Who knows?  The one thing I have found out is that there is only so much chemo the body can take.  There is also a limit on how much radiation any parts of the body can take AND that radiation can affect those body parts for years to come.  Damned if you do,…

By the way, my last blaug post about anniversaries failed to mention the above referenced Hodgkins radiation treatments.  They ended 25 years ago last month.  I'll drink (and tuck) to that.

Bottom line is that I continue to eat (mostly soft foods) and am reducing my tube feedings in anticipation of the tube removal.  Hopefully that will occur very soon.  Maybe my next post will contain that good news.  Keep your fingers crossed and maybe tuck your chin too.

Song of the week:
  "Take it as it Comes" by J. Roddy Walston & The Business

Nathan turned me on to him recently.  Check out this video from their appearance on the Conan Show.
http://teamcoco.com/video/j-roddy-walston-the-business-02-04-14

Also, I can never resist a good pic of Lucy

Happy Anniversary

On this Anniversary of the Esophagectomy that left me stapled, stitched, glued, tubed, sore, confused, scared, anxious, unable to swallow,…

I am grateful for the progress that we have made over these past 4 weeks.  And I do mean WE.  The help and support from the nursing staff, both in the hospital and at home, has been priceless.  Dottie and Nate at home, Ryan, Sarah and Lucy, not to mention (as I often do) all the family and friends that have sent love, prayers and support, which have been instrumental in the healing process.

We're not finished yet, but I can definitely see and feel the progress.  I have been eating more and more, and I've started to decrease the feeding liquid.  Not all the food by mouth has worked.  Last Tuesday, for my Birthday we went to Cold Stone Creamery.  Dot and I thought that would fit the SOFT foods diet.  I ate about half of my bowl.  When I got home, I was in misery - very nauseous.  Dot and Nate ate theirs with no problem.  What gives?  My body was not used to it and reacted.  Luckily, I recovered fairly quickly.  I did NOT end up taking a trip to Cold Stone Crematorium.

My next mishap was our first dinner out in the 4 weeks.  Friday, we went to Nacho Mammas.  Ryan, Lucy and Nathan joined us.  We had a good time, but at the end of the meal, I was not right.  I think my problem was that I just ate too much.  The food was soft again, but I ended up bloated and felt pretty uncomfortable for a little while.

Other than those hiccups, things are working well.  I have another swallowing test this Thursday.  Next Wednesday, we see the surgeon.  The hope is that by the time we see him, the feeding tube can come out.  But as usual, I get ahead of myself.  Gotta keep workin'.  Gotta keep chewin'.  I have meals to go before I eat (without a tube).

This weeks song(s).

"I've Been Waiting For You"
  recently heard David Bowie's cover of the Neil Young classic.  Love them both.  Listening to them tonight made me think of…

"Waitin' For Some Girl"
  by Ry Cooder.  Awesome song.  Check it out.

and of course these songs make me think of Dottie and our upcoming 40th Anniversary.  Now that is one to celebrate.