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