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Eating Part I

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

It's a bit boring I know, if you are a regular reader (and who isn't?) but I have to go over a bit of the history in order to get to where I am now.

Once upon a time, oh, five years ago, I guess, I was told that I had cancer and they could do some wonderful things with my tongue and nerves and maybe I could be the man I was before (they, apparently, unaware of my previous reputation as a man of sexual prowess, tongue-wise).

Oh, and they indicated I could eat again, too. (Food, you perverts!)

That, as I have indicated in the past, has not been the case. I recall that as soon as I returned from the hospital, I went to the fridge and made myself a most refreshing tall, and I mean TALL, glass of ice cold water. When my wife saw this, she went apoplectic ( that is big-word for batshit). She went crazy. Those of you who have had surgery to mouth, tongue, throat, you know, because they tell you, that water is probably the hardest thing to get down. They fear that you will aspirate, which is to say, that you will BREATHE your water. That can lead to drowning, or at least pneumonia.

Of course, if you have been sneaking (?) ice treats for yourself for two weeks in a hospital, it is not a problem for you. I frankly thought they were sugaring the ice cups, they tasted so good. And I had a system, hoping that the nurses and my wife would not catch on (as if)... I had three tiny cups of ice, one that I was allowed to take sustenance from (ice and a bit of water), one that I kept aside (more ice and water, the replacement I assumed they would not notice...I WAS half crazy in there, after all), and last, the all ice one I used to replenish cup two, which would ultimately replace cup one. That is how I lived in the hospital.

I rationed my water hoping they would not notice. And they DID complain if I overdid it. I still don't know why.

Except for the aspiration issue, I suppose, which never came up in official circles.

I really think that except for my paranoid wife they were rather pleased that I was going for it. I could be wrong: my ice and water continued to be rationed, after all.

That is a start.

I got home. I made myself a tall glass of ice water. Ice water! My wife came in, having brought me home just before, and dragging all of my crap into the house, to see me in the rocking chair sucking from that tall, cold, water.

She, um, went off. She went off so far that she actually threatened to leave me. I had no idea, of course. Many of you will know my response, and if you cannot imagine, well, then, you are a better person than me.

I was, let's say, perplexed. Here I was sipping from a glass of water and my wife was going ballistic and even threatening to leave me?

I didn't get it.

Oh, yeah, that aspiration thing.

Didn't buy it from the start. But SHE did!

To this day I think it hindered my development as an eater again, I really do.

I am not blaming her (okay, I am), but I think it made me a bit more fearful for awhile (yeah, I definitely am).

She is not to blame for what came next, for sure.

Eating requires a few major prerequisites. Among them are teeth (usually), a tongue (usually), and especially a mouth that will open and a throat (esophagus) that will accept food.

I was fortunate enough to have some teeth. They ripped out some wisdom teeth and a molar or two, but I was in good shape there.

But, I couldn't eat. I was missing part of my original tongue, and believe it or not, you need that to sort of move food around from tooth to tooth so that the teeth can do what they do. I know we didn't pay much attention in school, but it turns out that all of those babies have a purpose, and it turns out, as well, and this is something they DIDN'T teach you in school: the tongue moves the stuff to those various teeth for their various jobs.

Early on, of course, I could do yogurt and pudding and even ice cream, if there was no crap in the ice cream, like cherries or fudge or whatever. True!

PUddings. Cream of this soup or that soup. And even then, the little extras might gag me, the bits of chicken, for example (I hated that!).

And I was on the ever-reliable PEG tube, so eating was a sport, you might say, even if I practiced it religiously.

People complain about the tube, people want to get off of the tube, but I have to tell you, I had the tube for four years (stomach insertion...not sure I would have liked one through the nose), and I found it so convenient that I feared it...it was TOO easy. Like taking the elevator when you work on the second floor, you know?

It was quick, it was easy, and it was out of the way. I had no image issues with it. I feared it for its convenience. That's the truth. All of you who cry about it and wish it was gone, well, I have little sympathy. Sorry. Great device and it feeds you. Whatever your issues are, you should think about them and try to get over them, because that tube is a great device.

Me, I wanted it gone, and you do too, hopefully because it feels like a reminder, or like a dependency thing. Not because it looks ugly or whatever weird reasons some of you people seem to have. Get rid of it WHEN you can BECAUSE you can. No hurry. No worry.

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

You have a way with words. Do you write for a living? If not, perhaps you should take it up. It might make up for the loss of tongue prowess thing.

Deb

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I DO love a flirt :)

Take care,

Joe

MarkN_CT
Posts: 11
Joined: Nov 2010

A timely post (for me, anyway)! I was just de-tubed yesterday. Yeah, it's sort of a double edged sword; Tho' it kept me alive for a couple of months, I couldn't wait for the day it was going to come out.

BTW, I've lurked around this board for a while, finally joined up a few days ago. Your posts are an inspiration, as it looks like we went through similar procedures. Keep up the fight, and thanks for the inspiration.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Thank you, mark, for the kind words. I honestly didn't know that people read the old posts.

I will try to be more rational :)

And it DOES get better, dude! So hang in there!

Take care and best wishes,

Joe

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Hubby has a stomach inserted PEG which he wants out. It hasn't been used since he was in the hospital, and he eats fairly well. Since a nerve that helps move the tongue was removed, it is a little harder for him to move the food around, so he eats slowly. Also, because of his surgery he eats like a bird: small meals all day, including cereal with protein powder in it. He tells me his throat gets sore easily, so I just give him child size portions and wrap up the rest for later.

His docs wanted the PEG in until after radiation (he's still "thinking about it." Waiting until after New Year's for him to make his mind up. Please don't ask; it's a very long convoluted story). As of December 1, unless there is a change in the schedule, it will be removed. He's doing fine without and is not using it at all.

As for aspiration, I can understand that. Liquids find places that you never knew existed. Also, depending on the type of surgery, there can be an issue of fistulas as well. His surgeon was worried about fistulas as his drainage tubes were not draining properly, especially after the McDonald's Fiasco. That's a fun story and if you're curious, I'm happy to oblige.

When it comes right down to it, everybody and every body is different. Give your body the time to do what it needs to, but listen to your body as well. If you feel you are ready for something that the doc says you aren't tell him! He was almost completely healed before he left the hospital - the marker for a lary is being able to eat solid food. Now, except for the scar from the incision site and his stoma, he looks just like he did before surgery.

I should probably keep my mouth shut, but I can't resist adding what I observe as a caregiver :)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I loved reading your blog when I first joined. I was addicted for a while. I'd be on here all night in a bleary drug haze reading your blog entries until I finally passed out. It was hard to quit reading your very entertaining. I hated the peg popping out stories tho. I was always scared of that. Lol

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The peg popping out:

Since you are now a friend (:)), I will tell you about the PEG popping out. It was my third, by the way. They DO fall out. My first two fell out. As explained to me, the balloon bursts. I think what they were saying is that there is liquid in a little ball at the bottom of the PEG, and eventually it runs a tad low, at which point the tube escapes.

Both of those times, as you may have read, I ran off to the hospital and got emergency tubes, rather quickly replaced by the real deal. The reason for the emergency tubes is not because I had to suddenly "eat" Jevity. No, it is to make sure the hole does not seal up, requiring a brand new surgery.

But you probably know that.

Regarding the third tube, I was in the midst of sex, to be honest, with my wife, to be safe, when she either yanked it out or it fell out.

That all depends on who you ask if you know what I mean and I think you do.

Things were apparently not going so well for her, (I was having a great time!) because she was able to calmly suggest that I could either continue, or we could go to the ER (see the above, re hole filling, and I mean PEG hole).

Um. I chose NOT to go to the ER. Go figure. I'm not even going to make a joke about which hole I chose to fill, which will surprise many of my friends. She said, "You know, we have to go the ER right now if you want to replace that." And I said, "I'm good."

Thus, the end of the PEG tube.

It was not easy, sweet, not by any means. It has been brutal and if I had it to do over again, I would still fill the hole I filled, but, (okay, I couldn't resist that), I probably would have given it a bit more thought before making the same decision. The next months, the next year...it was tough my friend, as you have apparently read.

But it's all good.

Thank you for the kind words. And now...

You know the rest of the story :)

Take care!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

That just made tea come out my nose. Thanks.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

If hub is eating 100% without the tube there is no reason for the tube. If I had to do over again, I would have made sure I could eat without the tube before losing the tube (although if you read elsewhere herein you will see that I was in difficult straits as I made my decision).

If he is not using it, he does not need it. Simple as that. (I am not, by the way, a doctor, so ignore everything I say.)

In my own experience, small meals paced out over the day are great!

We want naturally to go back to our old ways, and we simply can't, certainly not at first, so if hub is eating small and eating often, he is way ahead of the game! I salute him!

And yeah, it becomes a real pain for you, but wrapping crap up is what we need. You need to guard against a big build-up, however. He will go through some cycles: eggs every day, cereal every day, cheese every day, that sort of thing, and he will want to save it all for the next day, and then he will ignore it (I'm just guessing here :))...and eventually your fridge will be filled with crap that he will not eat, you do not want, and which blocks out the stuff that is actually edible :).

I'm not saying to be a fridge Nazi, but keep an eye on that, for the betterment of both of you, especially him.

I also found it (find it) helpful to buy smaller portions: my wife would buy me half gallons of milk until I finally told her that quarts were fine...why buy stuff that might spoil when we can go smaller and then go buy more? I KNOW the bigger stuff is cheaper, but that only matters if you actually use it. Trust me: not just the milk: buy smaller for him.

He will want, for example, 18 yogurts. But five :). It's true.

Okay, off that soapbox.

As for the McDonald's fiasco, I can't wait to hear about it. We all have incidents. I like to share mine, as you know, and look forward to yours.

If I can be of any help, my friend, let me know. Hub has a tough row to hoe. I am all about hope and humor, but, to be honest, it's a tough row, it really is. In the midst of it, you are thinking one thing and it is only several years later that you think, ah, wasn't that bad.

But it was. Best wishes to hub, to you, and to all of your loved ones.

Take care,

Joe

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Any story with "fiasco" in the title is just TOO enticing.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Using the peg is much easier than eating!! Hubby has a peg and is 1 month post induction TPF chemo for stage IV BOT cancer. He starts radiation on Monday. Here is the problem: he just won't eat! He is relying on the peg and is receiving 2400 calories per day via tube feedings. He says everything tastes funny and he does not like "clumpy little surprises" in his food. Knowing he will have difficulty swallowing once the radiation takes effect, I am frustrated in his refusal to eat while he can! He thought he wanted some pumpkin pie so I made one. He took one bite and refused to eat more. Anyone have this
experience? I am tearing my hair out trying to coax him to eat.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Buzz,
I lost all interest in eating long before I was completely unable to do so. Lots of folks are so put off by the taste or non-taste of food that they choose to not eat. I kept trying different foods to see what I could still taste and what didn't taste disgusting or alien. When all else failed, and mouth sores made eating agony, I shifted to just biting the bullet, and chugging nutrition drinks. Keep reminding him that the more he swallows, the better his ability to swallow will be when treatment ends. Also, has anyone showed him the list of ingredients for his feeding tube formula? That may entice him to try some noursishment via mouth. Good luck.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Well I can sort of understand your frustration, but I think most of us understand your husband more. Yes, he should really keep trying to force himself to eat so he doesn't 'lose his swallow'. Having said that I only went 13 days before the pain was so bad I could neither eat nor drink. It's only going to get worse with rads. I had the magic swizzle, I was on 75 mcgs fentanyl and had liquid narcotics for break thru pain and still couldn't eat. My mouth continually bled and the roof of my mouth came off in a big sheet. Yeah. Couldn't eat. I did however keep up on brushing my teeth which was torture enough. :( Some people have an easier time thru rads and can swallow food the whole time. I sincerely hope that will be the case with your husband. You can only give him the advice from us to try and keep swallowing for as long as possible. I'm not trying to be mean or a smart a$$ but it really is something that you cannot understand unless you have been thru it. I've had countless people who have told me how they would just numb their mouth and keep eating. It's just not that easy. Just try and be firm but supportive cause sometimes we need a little kick in the keister too. I'm glad he has you. I had to go thru it on my own and it was hard to feed, medicate and care for myself. My step mom did drive me to rads every day tho. Best of luck to you both. Hang in there and just make sure if he cannot eat by mouth he gets enough hydration and nutrition thru his peg.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The PEG tube is there BECAUSE he has difficulty eating, buzz! Please don't press him! Others are correct when they observe that if he can swallow it will help him down the road (I developed (or was given?) a condition that closed up my mouth pretty severely, requiring physical therapy to get it even marginally open at one time).

That said, others have pointed out food really does suck for us at various points during treatment and beyond, and they are absolutely correct (they wouldn't like to you :)). Your husband's statement about 'clumpy' resonates with me: I could eat cream of chicken soup for example, but even so, when I got to a bit of actual chicken, I was off the soup for days, weeks :). Really.

Finally, when you mentioned the pumpkin pie, I had to laugh. I was like a pregnant lady at one time following my surgery and during treatment: my wife would go to whatever Food Doodle I asked of her, to buy whatever I craved, and when she returned home with my gloriously dreamt of treat, I would take a bite, a single bite, and say "I can't eat this".

It IS frustrating for you, buzz, and I do not envy you your role as caregiver one iota. It is a very difficult job and one that only someone truly in love could handle. (Oh, I don't know: is my wife in it for the insurance?).

I wish you the best. Because you are so concerned about your hub's needs, I have a feeling he is in the best of hands.

Take care,

Joe

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Laughed out loud when I read the Steely Dan at the start of your post. Love it

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

my husband told me the other day that taste for him is a strange thing. He lost his sense of smell so his sense of taste went too. He explained it to me that things he remembered the taste of he can still "taste" but if it's something new, he can't taste it at all. It's weird for him because things he still can taste the flavor is diminished quite a bit.

the PEG is great for supplemental, but he's gotta swallow! Milkshakes, smoothies, anything liquid throw some weight gainer in there and blend it well. Let him know this is one of those ya use it or lose it things, it might get him to see what's going to happen if he doesn't try.

Lots of hugs hun! I know just what you're going through!

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Alright, since you dragged it out of me ;)

I personally love this story and will cherish it more with time.

For most lary(ngectomy)s healing reqiures patience, which my husband Pat was absent the day God was giving it out. He was told well before surgery that he would have a feeding tube and was given the option for through the nose or a PEG. He chose a PEG and was told he would need to keep it in for a while since right after surgery and for a couple weeks after at least, possibly longer.

I did say Pat has no patience right?

For a comparison, there is a wonderful lady on here - Silver Foxette - that has had a similar surgery to Patrick's. She is a lary also and told me that it was almost 3 months before she could swallow anything. Other stories I've read from other larys sounds similar. It can be weeks to months before you either can swallow or are OK'd to swallow. Surgeons want to make sure you won't aspirate or create fistulas in their stitch work. Going back to fix those is painful and tedious for the patient.

Pat has the patience of a 2 yr old. I said that right?

His surgery was on a Friday. By Monday immediately after he wanted food and drink by mouth.
"Hun, I can't do that yet. You have to heal. You won't starve, they are feeding you."

Tuesday - "I want a Pepsi and chips (no-nos for healing larys! sharp foods and carbonated beverages!) They aren't feeding me today."
"Yes hun they are. No I can't bring it for you." dirty looks ensue.

Wednesday - "They aren't feeding me! It's been 5 days! (he started keeping count. good for brain bad for me) This is inhumane! I'm not in prison!"
"Hun they are feeding you. You have a feeding tube remember?"
"I'm still hungry! I can swallow my spit! What's the difference?!"

Thursday - see above, add one day, insert curse words at random

Friday - "SEVEN %%$%^^&*&^ DAYS!!!!!" This was the day I stayed at home to rest. I feel bad for his nurses.

Saturday - I caved in. I smuggled in Jolly Ranchers. "I can't take the taste of metal anymore!" His friends smuggled in Cherry Lifesavers. He also glommed 2 swigs of my Pepsi.

Sunday - Again glommed more Pepsi. Also asked for Sour Patch Kids. This was the day he started having problems with his drainage tubes (I called em bedbugs. They slept with him and sucked his blood. Seemed apt)

Monday - He woke up assuming he was going home. He was very very wrong. And so became very very very angry. By the time I made it to his room around 1 pm he was telling everyone he was going to sign himself out of the hospital. By this time his one drain tube site was softball size and not draining at all. The tube had been removed and the site was not flattening out. I did not want him coming home just to turn around and come back. So I did what any self respecting person would do to mollify an irrational person.

I gave in.

The number of things I could do was limited (can't bring beer in a hospital yet) so I offered this: If I bring you food, will you stay one more day?
"Yes."
"What do you want?"
"A quarter pounder with cheese, large fries, and a Coke."
He was supposed to have a swallow study to make sure there were no fistulas before eating even jello. In my mind we had been doing a swallow study since Saturday with cherry Lifesavers, Sour Patch Kids, and Jolly Ranchers. If he had a fistula, it would have drained into his tubes, or they would have caught the sound of fluid in his lungs.

I don't think I have ever seen a group of doctors move that fast, or ever will again.

Within 2 and 1/2 hours, all the residents on the surgeon's team, his speech therapist, and both surgeons had come to visit. All of them admonished the both of us, him especially.
"Carbonated beverages are the worst!"

"You do understand that when he gets home the first thing he's doing is cracking open a cold one right? Better to try it here when he's still in a hospital."

"French fries? Sharp foods can damage all the stitches!"

"Put ketchup on it."

Needless to say EVERYONE heard about this one. Everyone was amazed at his speedy (and I mean speedy) recovery. Most larys aren't healed for weeks after; he was almost good to go in 10 days.

And yes I broke a few rules. Ok, all of them. But as long as the patient is happy that is all that matters to me :)

P.S. - I did sneak in something clandestine. If you every hear of a construction worker asking for peanut butter cups, you'll know what I'm getting at ;)

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

As a general rule, beer solves most everything that quarter pounders don't. The others are solved by, um, peanut butter cups.

:)

Take care, and congrats to hub and his family (including his accomplice :)),

Joe

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

All the posts are so helpful. Buzz actually took in enough calories yesterday to omit 2 out of 6 3/4 cans of tube feeding formula. Milkshakes seem palatable. All the comments about taste are very helpful in making me actually understand what my hubby is going through and that he is not just being stubborn. All of you are wonderful people!

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I just poured my first one through the tube just to see what would happen (other than the buzz). Damned thing foamed all over. Need to tilt the tube like I do a glass. Next will be Jack Daniels.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

he wants to do the same thing with his PEG. I just can't find the stuff to make it work! He was sent home without anything for it, so he milks it once every day or so so anything doesn't get all icky.

I'll just have to remember to "tilt the glass" :)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Love this story. Thanks for sharing!

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I took a picture if you need the visual. Want to remember this years from now :)

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