Concerned for my (love) Bucket
Comments
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Saddest part is watching his body shrinkmotorcycleguy said:Kim,
I had Nasopharyngeal (Nasal Passage) - but the treatment sounds like the same.
I suspect he will have more mouth pain, than I did. So that could get challenging.
I was able to chug my girlfriends smoothies the whole time, so I was lucky.
Everybody is different, and I don't know (or need to know) how old he is. If he's younger - he'll likely recover sooner.
If he finishes early in April, he might really appreciate a vacation in May!
I finished treatment at age 59 - so it took me a couple months, before energy started returning.
I hope his outcome is the best possible one - for both of you!
mg
Bucket had him some guns going on. Big ole forearms from working on cars. Legs like trunks.
Now he is so diminished...even his hands are skinny.
He HATES HATES HATES that.
We used to bodybuild together so it's sad to see atrophy happen so quickly.
I have never regained my muscles after chemo; got me some pitiful little bumps when I flex.
Oh well.
Again I tell Bucket HE CAN DO IT.
The gym awaits his return.
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Some thoughts
KP..I leafed through the last 4-5 posts here. First let me say I am sorry to hear of the tough issues you guys are facing. I doubt anything I have toi say will actually help, but I'll give it a go.
To begin with..I read a few posts up that he was throwing out chunky soups .... I understand the wierd taste sensations..BUT ... 3 days AFTER treatmetns ended my wife, Pat, took a Campbell's Chunk Sirloin Burger soup, tossed itin the vitamix, pureed it, warmed it, put it in a coffee cup and it WENT DOWN smoothly..I could even sorta taste it. After that, my energy level strated increasing and the next day I ate TWO soups, a clam chowder and another sirloin burger. Since that time (now 4 weeks ago) I have been on the mend at an amazing pace. It all started with that one soup.
I understand the constipation, although mine was no where near as bad as his. No 911 calls for me .... I just had constant belly irritation; but same questions..how the hell could I be constipated when I have not eaten anything!!?? I was barely doing one bottle of Boost a day and maybe a bag of water. Eventually we had me taking a laxative 2x/day and it seemed to help ... plus doc gave me some pill to help with the gassy-ness that the constipation caused.
As for the mucous....have you guys tried my Mucous Hack? The Benadryl REALLY worked in that are (get doc permission). Here I am 5 weeks post treatment and still have mucous. So I feel for yas but know that at least for some of us, that is a continual thing.
I applaud your convictions and cheerleading..and perhaps that is what he needs. But had Pat been doing that I woulda bought some ear plugs. All I wanted those last 2-3 weeks was to be left alone and to "sleep it off". I knew where I was and what was happening and basically what to expect and cheerleading would have had the opposite effect of what I needed. But we are each different and you know your hubby better than any of us do. As for the pizza and burger ..... that "real soon" may be a pipe dream (again we are all different in our recovery) .... I am eating pretty well these days...still cannot taste, but eating a lot ... but the throat swelling is still there and it hurts to do much swallowing. And my tongue hurts from having to move food around in my mouth. I can "sorta" taste some tomato-based sauces, and a touch of garlic, and found out last night that lemon zest lights up the taste buds, but not much more than that. The thought of enjoying a pizza or good old commercial fast food burger is still in my distant future. Eating and ENJOYING eating are two completely separate categories in my world right now. I eat for "throat practice" and for nutrition (and because I love cooking!), but I have very little enjoyment from the eating itself.
I do not say any of this to be discouraging. And..AGAIN.. we each approach life and hurdles differently. I cannot assume I know what is best for either of you. But I sincerely want to be helpful if I can. And sicne you are asking for advice/help, I wanted to tell you my thoughts based upon my xperience and what I have read above.
The good news is TWO MORE RADS!!!! I hope he rings that bell nice and loud and gets home ot rest and begin recovery. There is SOME hope..I was told by everyone, including the doctors, that the 2 weeks post radiation were going to be my hardest, but thanks to that soup thing Pat discovered, I was up and at 'em by Day 5 of recovery. I hope that you guys will have a similar experience and recovery wlll be swift and full of new smiles.
I know that Pat felt helpless a lot of the time. But knowing she was there handling everything in the house, keeping the TV on closed captioning, checking in on me, making sure I had what I neeeded without being too pushy on what she wanted (EAT MROE, take more water, etc.) .. she let me be in charge of my experience even though she REALLY wanted me to eat another pudding cup or applesauce ... she knew that I would listen to my body and do what I needed. That was all comforting to me ... I had to worry about nothing except getting through my journey ... and when I could not sleep that was all I could do ... lay there, wishing I was asleep, looking out the window, and listening to the clock tick away the seconds into minutes.
Folks tried to call me a "trooper" and "warrior" ..but in fact I was just the body and mind that had no choice but to exist though the hell that was treatment. Pat, and folks like you and her, are the true heros of these things. You guys watch us in pain, you hear us lose our humor and love and zeal for life, you wonder if we will ever come back to normal. You try to feed us, comfort us, keep us doing "what we should"...you drive us to appoinments, go to the store when we have weird cravings, and cry and pray for us. Those of us fortunate enough to have wives/partners that are there for us as we go through this are the lucky ones indeed. You may or may not be doing the "right thing" every day, who knows what is right, right? But yoiu are there, and he is not alone, and he KNOWS it. I remember when I was at my worst I wanted to talk to Pat, I wanted to love on her, but I could barely manage a smile or a thumbs up. My head kept thinking of things it wanted to tell her but my mouth refused to move ..simply no energy available for that. I am sure your "Bucket" knows and feels this as well. And you know he does. Keep on doing what you are doing and keep yourself healthy and strong. You are the most important part of his life ..you were before this and you will be after ths, but with all he is dealing with presently, your presence and love and dedication are more appreciated than he can possibly convey to you.
As I used to tell Pat, YOU are his best medicine.
Don (Beagledad)
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I'm gonna tell Bucket right away about your good story!BeagleDad said:Some thoughts
KP..I leafed through the last 4-5 posts here. First let me say I am sorry to hear of the tough issues you guys are facing. I doubt anything I have toi say will actually help, but I'll give it a go.
To begin with..I read a few posts up that he was throwing out chunky soups .... I understand the wierd taste sensations..BUT ... 3 days AFTER treatmetns ended my wife, Pat, took a Campbell's Chunk Sirloin Burger soup, tossed itin the vitamix, pureed it, warmed it, put it in a coffee cup and it WENT DOWN smoothly..I could even sorta taste it. After that, my energy level strated increasing and the next day I ate TWO soups, a clam chowder and another sirloin burger. Since that time (now 4 weeks ago) I have been on the mend at an amazing pace. It all started with that one soup.
I understand the constipation, although mine was no where near as bad as his. No 911 calls for me .... I just had constant belly irritation; but same questions..how the hell could I be constipated when I have not eaten anything!!?? I was barely doing one bottle of Boost a day and maybe a bag of water. Eventually we had me taking a laxative 2x/day and it seemed to help ... plus doc gave me some pill to help with the gassy-ness that the constipation caused.
As for the mucous....have you guys tried my Mucous Hack? The Benadryl REALLY worked in that are (get doc permission). Here I am 5 weeks post treatment and still have mucous. So I feel for yas but know that at least for some of us, that is a continual thing.
I applaud your convictions and cheerleading..and perhaps that is what he needs. But had Pat been doing that I woulda bought some ear plugs. All I wanted those last 2-3 weeks was to be left alone and to "sleep it off". I knew where I was and what was happening and basically what to expect and cheerleading would have had the opposite effect of what I needed. But we are each different and you know your hubby better than any of us do. As for the pizza and burger ..... that "real soon" may be a pipe dream (again we are all different in our recovery) .... I am eating pretty well these days...still cannot taste, but eating a lot ... but the throat swelling is still there and it hurts to do much swallowing. And my tongue hurts from having to move food around in my mouth. I can "sorta" taste some tomato-based sauces, and a touch of garlic, and found out last night that lemon zest lights up the taste buds, but not much more than that. The thought of enjoying a pizza or good old commercial fast food burger is still in my distant future. Eating and ENJOYING eating are two completely separate categories in my world right now. I eat for "throat practice" and for nutrition (and because I love cooking!), but I have very little enjoyment from the eating itself.
I do not say any of this to be discouraging. And..AGAIN.. we each approach life and hurdles differently. I cannot assume I know what is best for either of you. But I sincerely want to be helpful if I can. And sicne you are asking for advice/help, I wanted to tell you my thoughts based upon my xperience and what I have read above.
The good news is TWO MORE RADS!!!! I hope he rings that bell nice and loud and gets home ot rest and begin recovery. There is SOME hope..I was told by everyone, including the doctors, that the 2 weeks post radiation were going to be my hardest, but thanks to that soup thing Pat discovered, I was up and at 'em by Day 5 of recovery. I hope that you guys will have a similar experience and recovery wlll be swift and full of new smiles.
I know that Pat felt helpless a lot of the time. But knowing she was there handling everything in the house, keeping the TV on closed captioning, checking in on me, making sure I had what I neeeded without being too pushy on what she wanted (EAT MROE, take more water, etc.) .. she let me be in charge of my experience even though she REALLY wanted me to eat another pudding cup or applesauce ... she knew that I would listen to my body and do what I needed. That was all comforting to me ... I had to worry about nothing except getting through my journey ... and when I could not sleep that was all I could do ... lay there, wishing I was asleep, looking out the window, and listening to the clock tick away the seconds into minutes.
Folks tried to call me a "trooper" and "warrior" ..but in fact I was just the body and mind that had no choice but to exist though the hell that was treatment. Pat, and folks like you and her, are the true heros of these things. You guys watch us in pain, you hear us lose our humor and love and zeal for life, you wonder if we will ever come back to normal. You try to feed us, comfort us, keep us doing "what we should"...you drive us to appoinments, go to the store when we have weird cravings, and cry and pray for us. Those of us fortunate enough to have wives/partners that are there for us as we go through this are the lucky ones indeed. You may or may not be doing the "right thing" every day, who knows what is right, right? But yoiu are there, and he is not alone, and he KNOWS it. I remember when I was at my worst I wanted to talk to Pat, I wanted to love on her, but I could barely manage a smile or a thumbs up. My head kept thinking of things it wanted to tell her but my mouth refused to move ..simply no energy available for that. I am sure your "Bucket" knows and feels this as well. And you know he does. Keep on doing what you are doing and keep yourself healthy and strong. You are the most important part of his life ..you were before this and you will be after ths, but with all he is dealing with presently, your presence and love and dedication are more appreciated than he can possibly convey to you.
As I used to tell Pat, YOU are his best medicine.
Don (Beagledad)
Don I think I can see through me tears. You really touched me.
Man, I'm a crybaby these days...but not when Bucket can see me.
What beautiful sentiments RE: wife units/partners being true heroes and best medicine. Sh** howdy, maybe I am doing some good.
Okay I will get some of those soups and try to tantalize him about a week out after April 6 finish date.
He is going to keep getting hydration beyond the treatments-they make him feel more-better.
Now that he takes his blood pressure everyday he can see the palliative effects of the extra hydration.
When he's better I am going to tease his **** for having to barf on the side of the freeway like a drunk teenager.
While I'm teasing I'll have to relate this funny.
After I finished my hike I guess I was gently cajoling Bucket to let me take him on a walk-walk around our block; mentioning how exercise lifts mood and boosts appetitie.
He said he DID exercise.
I asked "whaddid you do?"
He got a sheepish look and said he was brushing the sides of "my" pool (because HE cares about me and the fact that I can't wait for swimming season to open for me weather-wise.)
and he accidentally fell in fully clothed.
Did I offer sympathy? Hell no I laughed my **** off.
AH HAH! That explained the mystery load of his one set of clothes in the washer when we had a basketful to do.
He does have his sense of humor lurking in there.
And mine can't stay down long before it perks up again!
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Sense of smell has gotten extremely acute and causing nausea
I didn’t have a support system like this when I went through my bouts of cancer.
In 2009 I was able to cope by learning to cook and writing jokes. I even published my little cookbook in November 2018 just to say I did what I said I was gonna do.
I find that I am the one that needs support when it is my Bucket going through cancer-not me!
So here I am bewildered as I can be.
Wow his sense of smell has become so ACUTE that it is crazy!!
Guess we gotta buckle up for these last 2 radiations.
I really cannot see how he can gag and spit as he has been when he is on his back with his radiation mask on and that huge machine hovering over him.
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We are a lot alike
First I have no idea how he can do that during radiation. I worried every day that I was going to have to ask themn to stop so I could spit. Thankfully that never happened.
As for smell.... my sense of smell hightened early on...week 2 or 3. I mad an entire slow cooker batch of chicken broth then soup, and by Day 3 of it cooking, I almost puked when pouring it into jars. Just 2 weeks ago Pat and I finally pulled them from the freezer and threw them away. I never ate a drop of that broth or soup ... and broth was the thing keeping me going after my TORS. But that one bad smell day ruined that whole batch for me.
Regarding your cookbook ... too funny. I spent many hours when I could do nothing else researching recipes and devising my own as variants. I printed them all out, got a binder and have them all categorized with lined paper in between each recipe..so Pat and I can analyze what we like/dislike about it and make suggestinos for "next time". As I said I cannot taste them so I have to rely on Pat, whom I call my Live In Food Critic (Less salt, more brown sugar, more bacon, etc). I even made a facebook page with pictures and recipes (The Chow Hound; feel free to Like) -- I really enjoy cooking and I enjoy chow..so even if I cannot taste it yet I can get the pleasure fom making things and seeing how my recipes turn out. But, Katie bar the doors when my taste returns!! I am saving a lot of the recipes until then!
Just thought it was cute how you and I both found the same avenue for coping. ANd for the humor part ... well, Pat is a walking riot, and together I always said we should be on a sitcom.
It was tough not engaging in the normal day to day banter and humor that is Pat & Don whilke I was at my lowest. We are both happy to have all that back now. Laughter is, indeed, the best medicine! (Also funny..I ALSO posted a chicken broth recipe like you did..Called mine Don's Brown Chicken Water ..lolol)
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Please God let him eat!
It is day 6 with only 1 whey isolate protein drink made with water. Bucket was going to sleep in the office so that he wouldn't keep me awake with his gagging but I asked him to please sleep with me so I know that he is okay. A pattern has formed:
He sleeps until 12:30 pm and gags and spits then goes back to sleep. At 5:30 he awakens gagging again, gets up for 10 minutes then exhaustedly goes back to bed. He has been taking a 1-2 hour nap around 2 pm.
The foods that he could eat for the longest period of time were home mashed potatoes and poached eggs. I pray for the day he asks for them!
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It Sounds Familiar
Though now thankfully a distant memory to me and will be for him someday. This sounds like all part of the normal process of this. I went through the same thing and many others on here also. Waking up gagging with thick phlegm and clearing it out and being exhausted from the treatment and it seemed if my rear end would hit a chair I would fall asleep. It just takes time now and persistence and patience to deal with recovery. Different for me was a feeding tube and not being able to swallow at this point so it was easier for me to get nutrients. Thanks for updating-Take Care-God Bless-Russ
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Okay after 5 days he had a chocolate pudding cup...Kimmy Poo said:Please God let him eat!
It is day 6 with only 1 whey isolate protein drink made with water. Bucket was going to sleep in the office so that he wouldn't keep me awake with his gagging but I asked him to please sleep with me so I know that he is okay. A pattern has formed:
He sleeps until 12:30 pm and gags and spits then goes back to sleep. At 5:30 he awakens gagging again, gets up for 10 minutes then exhaustedly goes back to bed. He has been taking a 1-2 hour nap around 2 pm.
The foods that he could eat for the longest period of time were home mashed potatoes and poached eggs. I pray for the day he asks for them!
I guess that's a start! He is acting like he would like to find something that he can eat; I suppose that could be considered an appetite? I shall have Yukon potatoes at the ready if he signals that he would like mashed potatoes again. I would love for him to ask for a poached egg.
Ah patience Grasshopper.
Not my strong suit.
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He is 3 weeks out post-treatment and a new man!
Or more correctly Bucket is getting back to himself! He finally submitted to the shave and haircut I had been begging to give him. I knew he felt so crappy he didn't care if he looked that way too. He looks so handsome again! He went to the oncologist with a bit of a more energetic step. Dr. said that he was so surprised by how good he looked. He's my oncologist too and I could sure do with one with a more positive personality; I do understand that they probably have to tell patients to expect the worst. This isn't good for an analytical mind like Bucket's. Ah well. I told him he was bigger, better, badder than everyone else so he didn't have to follow the oncologist's predictions.
We had a rough go of it 8 days ago. Yeah, another episode of FULL OF IT but this time no Turbo Enema at the hospital required. He called me and I ran out and he was very white so I called 911. While I was doing that he dead walked into the bathroom and then luckily I could help him fall back nicely.
Then he cleaned himself out, and yeah it's the same old 10 pounds as the hospital got with our first emergency. The guys and gal got here and I had pretty much cleaned up but left souvenirs so that they could check it out if they needed too. The nice guys helped with the first mopping; that was so sweet.They cautioned Bucket to be sure to eat salt because he was peeing out all liquids and dehydrating himself again. So I said you mean like he should eat an egg I make for him right now with salt on it? They all laughed and said yes. They wished me happy birthday and I invited them to peek at Bucket's award winning Mustang.The EMTS asked for a rolling chair so I got Bucket's office chair. And guess what it rolled in. You got it. You know how hard it is to clean roller caster wheels?! I had missed my CT scan appointment so when I shared the reason why they were so accommodating and sweet cuz I said this wasn't the way my birthday was supposed to go so YAY I got my scan while waiting for Bucket's hydration to be done so no harm, no foul.
Now that he is on the mend and gaining weight daily it is a happy place again and Bucket is smiling again!
So hang in there peeples!
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So Glad For
you folks that you are well over the hump and he is getting better by the day. It sure is tough for awhile but now the payoff. If the doc is impressed he must be doing well. Now you got your scan taken and we would be praying that it is NED. Wishing You The Best-Take Care-God Bless-Russ
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