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shelterbuilder
09-24-2007, 20:30
Those of you who know me personally, are aware that on May 11th of this year, I lost my voicebox during cancer surgery. Due to complications from prior treatments, I was also left with an "extra" hole in my throat (in addition to the stoma through which I now breathe) and a feeding tube in my stomach.

I am pleased to announce that this weekend was the first time since the surgery that I ventured out onto the AT to "see how well the remaining equipment works"! I picked a rocky section of trail in Pa. (Rt. 501 to Rt. 183 and back again), and just threw some old equipment in a pack and took off.

God, it felt so good to be sore!:D But I'm happy to report that my speed and endurance seem to be back. I have some unresolved issues that need attention (like breathing into my sleeping bag at night because of my stoma's location), and I did get some funny looks from other hikers at lunchtime ("What IS he doing with that syringe??"), but apart from carrying no kitchen stuff and a boat-load of cans of liquid food, everything was normal.

So the next time you talk to someone who's gone through life-altering surgery, tell them that they CAN get their life back - if they want it. ATTITUDE IS EVERYTHING.:sun

dixicritter
09-24-2007, 20:33
Awesome news!!! Congrats on the successful hike! :)

Frolicking Dinosaurs
09-24-2007, 20:36
::: Dino jumps for joy and has tears streaming as she reads about ShelterBuilder regain his life :::

Suzzz
09-24-2007, 21:00
Wow! What an inspiring story. Congratullations!

Tub feeding can have it's downsides but if you wanted to you could walk while "eating" if you can set it up with a bottle and feed yourself by gravity. Those cans are heavy though and that's a definite downside. As far as breathing in your sleeping bag, can you attach tubing to your stoma? If so you could redirect it outside of the bag. That would help avoid exhaling all this humid air inside your bag and making you cold. Anyway, those are probably things you've already thought of.

Congratullations again on your accomplishment and happy hiking!!!

Phreak
09-24-2007, 21:01
Congratulations!!!!!!!

FanaticFringer
09-24-2007, 21:10
Very inspirational. Thanks for sharing.

Frolicking Dinosaurs
09-24-2007, 21:21
Does the liquid food come as a powder that can be mixed on site?

Auntie Mame
09-24-2007, 21:42
Not to interrupt your query, Dino, but just want to also say how much the light comes through in Shelterbuilder's sharing of his return to the trail. That is Attutude, squared!

shelterbuilder
09-24-2007, 23:35
Does the liquid food come as a powder that can be mixed on site?

Good question - I'll have to ask my supplier!! (I should have thought of this myself - but sometimes I'm a little slow on the uptake.:o )

Lyle
09-25-2007, 00:05
Congratulations!

If your normal food doesn't come in powder form I would check with my Doc about possibly substituting Carnation Instant Breakfast for some or all of the meals. I'm sure it's probably not as complete of nutrition, but may be acceptable for the short term while hiking.

Mr. Clean
09-25-2007, 04:41
Congrats Shelterbuilder!! Good luck with your future hikes, and life.

shelterbuilder
09-25-2007, 19:20
Wow! What an inspiring story. Congratullations!
Tub feeding can have it's downsides but if you wanted to you could walk while "eating" if you can set it up with a bottle and feed yourself by gravity. Those cans are heavy though and that's a definite downside. As far as breathing in your sleeping bag, can you attach tubing to your stoma? If so you could redirect it outside of the bag. That would help avoid exhaling all this humid air inside your bag and making you cold. Anyway, those are probably things you've already thought of.
Congratullations again on your accomplishment and happy hiking!!!

Suzzz, I'm already working on a "snorkel" device - of course, that means I'll have to schedule another trip to test it!!:D

Lyle, in terms of powdered food, the only real concern that the docs will have, will be making sure that the powder is mixed completely to avoid clogging the tube. I've already had one tube fail and have to be replaced - not fun, since they do it without anesthesia! (Basically, it's a "yank and jam" job.:eek: ) In terms of calories, I can figure that out without any trouble. Any short-term nutrient loss will not be a practical concern unless I was out on the trail for a month.

Suzzz
09-25-2007, 20:22
I doubt seriously that you'll find a health professional specializing in GI feeding to recommend the use of powdered products. The risk of glogging the tubing is simply too high. Expecially when you're on the trail. Then what would you do?

On that note... Has your doctor told you to use Coke to unplug a glogged feeding tube? This is not a joke. Fill a seringe with about 5cc of Coke or Pepsi and push it into the tube. If you feel resistance, push and pull a few times. Obviously you want to avoid bursting the tube or the balloon at the end of it (that would not be good) so don't apply too much pressure. A nice even pressure is what you're looking for. Also this will only work as long as the tube hasn't been plugged for more than a few hours.

musicwoman
09-25-2007, 21:16
God Bless, and thank you for your inspirational post!!!

I hope people don't think I am being crass here.....did you lose your larnyx due to cancer caused by smoking?

musicwoman
09-25-2007, 21:17
ps--- I am a smoker.....that is why I ask......I hope its ok to ask

Toolshed
09-25-2007, 21:33
Hey Congrats SB!!! Glad to see you are moving again. I went through 3 Life-altering surgeries and It is absoltuely a great feeling to be up an walking. I also have someone very close to me that lost thier voice box and has a hole and a speaking valve now. We'll have to talk sometime (and hike!!!)
Cheeers :)

shelterbuilder
09-25-2007, 21:46
I doubt seriously that you'll find a health professional specializing in GI feeding to recommend the use of powdered products. The risk of glogging the tubing is simply too high. Expecially when you're on the trail. Then what would you do?

On that note... Has your doctor told you to use Coke to unplug a glogged feeding tube? This is not a joke. Fill a seringe with about 5cc of Coke or Pepsi and push it into the tube. If you feel resistance, push and pull a few times. Obviously you want to avoid bursting the tube or the balloon at the end of it (that would not be good) so don't apply too much pressure. A nice even pressure is what you're looking for. Also this will only work as long as the tube hasn't been plugged for more than a few hours.

Yes, we know about the soda thing - I prefer Pepsi.

Yes, I agree that the docs probably won't recommend powdered products for just that reason. However, my docs wouldn't believe me if I told them about half the stuff I'm doing now! (They didn't believe it when I was up and doing laps around the hospital wing 2 days after the first trip to the OR.:eek: ) And as I said in a previous post, this is the second tube; replacements are a "yank and jam" job without anesthesia; the procedure REALLY hurts!:eek: Been there, done that, don't want to go back!

shelterbuilder
09-25-2007, 21:51
God Bless, and thank you for your inspirational post!!!

I hope people don't think I am being crass here.....did you lose your larnyx due to cancer caused by smoking?

Don't worry about what other people think - ASK AWAY!

I was a smoker for 12 years, quit for 16 years, then went back to it for another 4 years before the cancer was diagnosed. While they never said that the smoking caused the cancer, I feel that this was probably the primary cause.

Obviously, I don't smoke anymore!:D Neither do I recommend it!:D

shelterbuilder
09-25-2007, 22:03
Hey Congrats SB!!! Glad to see you are moving again. I went through 3 Life-altering surgeries and It is absoltuely a great feeling to be up an walking. I also have someone very close to me that lost thier voice box and has a hole and a speaking valve now. We'll have to talk sometime (and hike!!!)
Cheeers :)

I had radiation 2 years ago in the first attempt to stop the cancer. The radiation caused tissue damage that manifested itself in an inability to heal at the surgery site. So, in addition to the stoma, I also have a fistula under my chin that hasn't closed yet. (It was bigger than a quarter at first; now it's smaller than 1/4 inch.) Hyperbaric oxygen helped, but it's going to take time for the "extra" hole to grow shut. That's the reason for the feeding tube - everything just runs out the hole. (Can you say "Bib", boys and girls?:D ) Anyway, there's chemo in my future (after the hole closes); after that, they want to give me a speaking valve. But this is likely to go on for quite some time, and I'll be d^mmed if I'll wait THAT long to get my life back. I'd rather go for it now, and let tomorrow take care of itself!

modiyooch
09-25-2007, 22:05
Sorry I missed you this weekend. I'm glad it was a successful outing for you. It was a beautiful hike and great weather.

shelterbuilder
11-10-2007, 15:44
Those of you who know me personally, are aware that on May 11th of this year, I lost my voicebox during cancer surgery. Due to complications from prior treatments, I was also left with an "extra" hole in my throat (in addition to the stoma through which I now breathe) and a feeding tube in my stomach.

I am pleased to announce that this weekend was the first time since the surgery that I ventured out onto the AT to "see how well the remaining equipment works"! I picked a rocky section of trail in Pa. (Rt. 501 to Rt. 183 and back again), and just threw some old equipment in a pack and took off.

God, it felt so good to be sore!:D But I'm happy to report that my speed and endurance seem to be back. I have some unresolved issues that need attention (like breathing into my sleeping bag at night because of my stoma's location), and I did get some funny looks from other hikers at lunchtime ("What IS he doing with that syringe??"), but apart from carrying no kitchen stuff and a boat-load of cans of liquid food, everything was normal.

So the next time you talk to someone who's gone through life-altering surgery, tell them that they CAN get their life back - if they want it. ATTITUDE IS EVERYTHING.:sun

Just a quick update before my computer craps out on me and shuts down again!!

I've been on 2 more overnight trips - a 14 mile overnighter with one of the dogs tethered to my wrist, and an 18 mile trip. I had to make a "sleeping bag snorkel" so that I wouldn't be breathing into my sleeping bag - that seems to work perfectly. I tried substituting infant formula (milk-based) for my cans of liquid nutrition - didn't work out (ran a test at home, but my system couldn't tolerate that stuff). These trips were with overnight temps still above freezing - I can't wait to try this with freezing temps, but I'm ready for it!:cool:

I'm also ready to go back to work on Monday - 6 months and a day after my surgery. My surgeon and the company doctor have cleared me - they said that if I can handle hiking on the AT, I can handle work!:D

cowboy nichols
11-10-2007, 16:04
You Are My Hero !!

Jan LiteShoe
11-10-2007, 16:19
God, it felt so good to be sore!:D

I love that!
I have a friend who is paralysed from MS, younger than me. She was a painter in her former life, and has taken it up again with a brush in her teeth and slight head movements she can still make. Friends mix her paints at her direction, and move the canvas toward her when she indicates.

Palmer has sold several paintings from her "second life." It keeps her going, and gives richness and creative depth to her life.
But she'll be the first to tell you that she nearly didn't continue after the first few inept tries.

When I have myself a pity party, I think of Palmer and her grit. It gets me to the right place, where I can feel grateful for what I DO have. Attitude really does swing the balance, and allows for extra-ordinary surprises.

Roots
11-10-2007, 16:22
What an inspiration you are to those who think it's not possible!!! Thank you for the reminder on how great life can be and how it is worth fighting for what you love!!!:sun

Frolicking Dinosaurs
11-10-2007, 16:49
::: Dino beams at shelterbuilder and dabs at tears of joy for his accomplishment in the face of adversity :::