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alfredo

(60,071 posts)
Wed Feb 20, 2019, 05:24 PM Feb 2019

Status update. Three years since my feeding tube was inserted.

Still cancer free, and I am still regaining things I lost through Chemo and radiation. Also i’ve Accepted the loss of thyroid function, hearing loss and vertigo.

My salivary glands are rebounding, so have my tastebuds. My taste has changed, but not too bad. The only beef I can eat is rare steak. Fish and chicken are a problem. Pork is tolerable, but I still prefer veggies. Ground meat is a No No.

Bread is tough, but I have ways around that. Whole wheat artisan breads seem to be passible. Rice is not as desirableanymore.

I just made bean burritos in green sauce. I covered it in veggies, sour cream, and hot sauce and salsa.

Coffee is returning to my diet. Adding cocoa powder makes it so much better. Turkish coffee and espresso are other ways palatable. The coffee grounds serve as a good scrubbing medium for my cast iron pans.

Earl Grey tea is so good.

Serrano and Jalapeño are a part of my diet. Anaheim peppers are fun too.

Beans and greens (kale and white beans) are a real treat.

Leg strength has returned, and I am walking more with the help of my cane.

So life is good, especially being cancer free. So far Taking Synthroid and tube feeding will be with me for the rest of my life due to a damaged Thyroid and my inability to get adequate liquids and nutrition. Radiation damaged my throat. So milk and water are problematic. Still as I said, life is good.

44 replies = new reply since forum marked as read
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Status update. Three years since my feeding tube was inserted. (Original Post) alfredo Feb 2019 OP
;-) elleng Feb 2019 #1
Happy for you to have another day and a chance to update us... Moostache Feb 2019 #2
I remember when you had so much trouble awhile ago . I am so glad life is good for you lunasun Feb 2019 #3
Glad things are going in the right direction and you can taste food! We take so much for Doodley Feb 2019 #4
Yay! I'm so happy! Solly Mack Feb 2019 #5
Glad you're feeling better! Paz. RestoreAmerica2020 Feb 2019 #6
Thank you. It's always encouraging to share the progress and the positives! TygrBright Feb 2019 #7
Everybody talks about health (in my circle). erlewyne Feb 2019 #8
Whatever happen you deal with it. There's no viable option alfredo Feb 2019 #23
Welcome to the light at the end of the tunnel DFW Feb 2019 #9
I have to credit my doctors at the VA. alfredo Feb 2019 #24
Sounds like you were in good hands, indeed DFW Feb 2019 #31
Great! aka-chmeee Feb 2019 #10
I swore I would not gain back the weight, TNNurse Feb 2019 #11
Yeah I turn 74 next week. That is why recovery is dragging. alfredo Feb 2019 #25
I was only 64 at onset aka-chmeee Feb 2019 #32
One thing I've learned: Enjoy every day of your life! CaptainTruth Feb 2019 #12
Thank you for the update,... magicarpet Feb 2019 #13
Spring is significant for me, I was declared cancer free May 3rd alfredo Feb 2019 #26
You are very inspiring! What a great attitude! yardwork Feb 2019 #14
So proud of you for coping as well as you have! Karadeniz Feb 2019 #15
Hope each day samplegirl Feb 2019 #16
Thyroid advice Chicagogrl1 Feb 2019 #17
I will bring that up when I see my gp. alfredo Feb 2019 #27
Brave. That's what you are lillypaddle Feb 2019 #18
Oh my! 2naSalit Feb 2019 #19
I'm a hyper person, maddengly cheerful. alfredo Feb 2019 #29
Thank You for sharing. k and r Stuart G Feb 2019 #20
You're making yourself better, great to hear. JudyM Feb 2019 #21
What do you think helped you get better? n/t madisongrace Feb 2019 #22
I love earl grey too n/t deek Feb 2019 #28
Thanks for all the responses. I didn't know cancer was so popular, alfredo Feb 2019 #30
☀️❤️ Love and strength to everyone in this thread. ❤️☀️ we can do it Feb 2019 #33
Thank you. alfredo Feb 2019 #36
Dear alfredo, CrispyQ Feb 2019 #34
It's character buildingprevail. alfredo Feb 2019 #37
You have such a good attitude LiberalLoner Feb 2019 #35
I might not completely understand the gravity of my situation. alfredo Feb 2019 #38
Great news malaise Feb 2019 #39
I still have to guard against aspiration. alfredo Mar 2019 #40
wish I could hug you in person :) JHan Apr 2019 #41
Thanks. It's been a long strange trip. alfredo Apr 2019 #42
You've inspired me with your positive attitude PennyK Apr 2019 #43
Thanks alfredo Apr 2019 #44

Moostache

(9,895 posts)
2. Happy for you to have another day and a chance to update us...
Wed Feb 20, 2019, 05:30 PM
Feb 2019

Best of luck with the on going adjustment to life as it is...which beats the alternative every day and twice on Sundays. Hope things stay on the positive tip for you!

Doodley

(9,088 posts)
4. Glad things are going in the right direction and you can taste food! We take so much for
Wed Feb 20, 2019, 05:39 PM
Feb 2019

granted until we lose it. I hope things continue to improve.

erlewyne

(1,115 posts)
8. Everybody talks about health (in my circle).
Wed Feb 20, 2019, 07:01 PM
Feb 2019

And thank you alfredo, for sharing.

I have been lucky for too long. I refuse to share my pains and aging
with my coherence's. I have been there in my sixties. Whether we like it
or not, some where, tomorrow, the sun is going to shine.

Thanks alfredo, and that leg strength is very important. I'm just hoping
that I never get cancer ... odds are against me.

DFW

(54,365 posts)
9. Welcome to the light at the end of the tunnel
Wed Feb 20, 2019, 07:08 PM
Feb 2019

It's brighter for some than others, but some never get to see it at all.

My wife had cancer twice, the second time being a form known in her clinic as "the murderer." She was that one in ten thousand that found it (quite by accident) early enough to beat it. A good friend of ours had it, too. She was not so lucky, and we buried her last year.

Just to here to tell the tale is sometimes an accomplishment in itself.

alfredo

(60,071 posts)
24. I have to credit my doctors at the VA.
Thu Feb 21, 2019, 12:32 AM
Feb 2019

I knew I was in good hands with them. Plus, cancer treatment is free for veterans.

DFW

(54,365 posts)
31. Sounds like you were in good hands, indeed
Thu Feb 21, 2019, 06:43 AM
Feb 2019

My wife lucked out here when she got "the murderer," as she was sent to the top specialist as soon as the diagnosis was in. Medical care is not "free" here in Germany, and she was 64 at the time, so her government-guaranteed medical insurance hadn't kicked in yet, but I had been paying for her medical insurance since she retired (about €500 a month, or around $600, as I remember), and that covered everything, even including a four week stay at a rehab spa in the Black Forest. Now that she is over 65, the German version of Medicare has relieved me of the monthly payments, though we are perfectly fine if she is spared a third round of cancer. I'm probably next, since both my parents had it, and so did ALL of their siblings. I already lost a cousin to glioblastoma 25 years ago. I'm not looking forward to it. Though I pay income taxes in Germany, I get no medical insurance at all, and no pension, so when it hits me, I have to take the first plane home to get treated. It's just an 11 hour nonstop to Dallas from Frankfurt or Paris, so I can probably handle it.

aka-chmeee

(1,132 posts)
10. Great!
Wed Feb 20, 2019, 07:22 PM
Feb 2019

Been cancer free five years; and doctors have all cut me loose. Sounds like your treatment was much more severe than mine but I am familiar with some of your continuing problems, i.e., hearing loss, change of taste, thyroid damage, etc. Sadly, the only thing I have completely recovered is the one thing I wouldn't have missed...I have gained back almost all the weight I lost.
Congratulations and hope things keep getting better!

TNNurse

(6,926 posts)
11. I swore I would not gain back the weight,
Wed Feb 20, 2019, 07:42 PM
Feb 2019

I failed at that. I had temporary taste bud loss, so sorry to know you and the poster have long term loss. I retained my sweet taste buds throughout but lost salt. I explained to someone that a Frito chip (which is very salty) tasted like cardboard. Those who have not experienced just cannot understand. Fortunately my taste buds recovered but the weight accompanied it.

alfredo

(60,071 posts)
25. Yeah I turn 74 next week. That is why recovery is dragging.
Thu Feb 21, 2019, 12:50 AM
Feb 2019

I haven’t gained back my weight. 40 pounds gone. I can’t seem to gain weight. I just can’t eat enough, and the things I like are low fat like steamed veggies.

Congrats for making beyond five years.

I had 35 radiation treatments to my tongue and neck, and 2 doses of chemo. I was scheduled for 3, but my immune system complained. It was already damaged from Crohn’s.

Yep enjoy each day

aka-chmeee

(1,132 posts)
32. I was only 64 at onset
Thu Feb 21, 2019, 08:42 AM
Feb 2019

had 35 radiation treatments and 7 chemo with cisplatin (whatever the heck that is!). And maybe encouraging that I was out 3 years before I gained any significant amount of weight. Like you, veggies are my favorite food now. Stir fry, veggie soups, etc. I think after a while, we unconsciously adjust our taste expectations and "forget" what things tasted like before. And, despite my complaints, it beats Hell out of the alternative. As you said, "Enjoy each Day!"

magicarpet

(14,145 posts)
13. Thank you for the update,...
Wed Feb 20, 2019, 07:59 PM
Feb 2019

.... nice to hear you are up and about dealing with it all very graciously.

Spring will be here soon and nature goes through a transitory state where we realize a new and welcomed new beginings right before our eyes.

Can't wait to put winter back on the shelf,... and greet the warm weather with open arms and anticipation.



Karadeniz

(22,511 posts)
15. So proud of you for coping as well as you have!
Wed Feb 20, 2019, 08:06 PM
Feb 2019

People who always strive to control their life and world are misguided. So often we cope and that takes real character!❤❤❤❤❤

samplegirl

(11,476 posts)
16. Hope each day
Wed Feb 20, 2019, 08:06 PM
Feb 2019

gets a little better. Glad your enjoying tea! It’s one of my favorites. Wishing for your continued health.

Chicagogrl1

(418 posts)
17. Thyroid advice
Wed Feb 20, 2019, 08:07 PM
Feb 2019

Glad to hear you are on the mend. I would suggest something other than Synthroid. Synthroid is a T4 only med & requires your body to convert it to T3, the active hormone that every cell of your body uses. Your T3 level directly affects your energy & healing. I would highly suggest looking into NDT(natural dessicated thyroid- rx medicine) ie Armour or NP Thyroid. The book Stop the Thyroid Madness details proper thyroid treatment based upon years of patient experience. Synthroid is not considered an optimal treatment option. Good luck with your continued healing.

alfredo

(60,071 posts)
27. I will bring that up when I see my gp.
Thu Feb 21, 2019, 12:55 AM
Feb 2019

My wife has been on Synthroid for most of her life. I think she NDT, but it didn’t seem to work for her. She has no pituitary gland.

lillypaddle

(9,580 posts)
18. Brave. That's what you are
Wed Feb 20, 2019, 08:09 PM
Feb 2019

When people would tell me how brave I was (breast cancer), I almost resented it, because bravery wasn't an option. However, survival was. You are brave because of what you have obviously overcome, and continue to overcome, and because heroes are few and far between these days. Thanks for sharing. Positive thoughts for your continued journey, and hoping it gets easier day by day.

2naSalit

(86,569 posts)
19. Oh my!
Wed Feb 20, 2019, 08:17 PM
Feb 2019



I had no idea you had this experience! I am glad to hear that you are doing better. My dearest friend is in the post radiation/chemo stage right now too, it has many challenges!

And I am glad that you have a positive attitude at this stage, that in itself can be a big challenge. Take it easy and kept on keepin on!


alfredo

(60,071 posts)
29. I'm a hyper person, maddengly cheerful.
Thu Feb 21, 2019, 01:00 AM
Feb 2019

I find humor every where, even during chemo I can find something to laugh about.

Tig Nataro is my hero.

alfredo

(60,071 posts)
30. Thanks for all the responses. I didn't know cancer was so popular,
Thu Feb 21, 2019, 01:04 AM
Feb 2019

or that Cisplaten was a party drug.

we can do it

(12,184 posts)
33. ☀️❤️ Love and strength to everyone in this thread. ❤️☀️
Thu Feb 21, 2019, 10:01 AM
Feb 2019

You are inspiring. I'm thankful for all of you.

CrispyQ

(36,460 posts)
34. Dear alfredo,
Thu Feb 21, 2019, 11:22 AM
Feb 2019

I didn't realize you were facing such issues. Positive & healing vibes & a hug just for you.

PennyK

(2,302 posts)
43. You've inspired me with your positive attitude
Wed Apr 24, 2019, 09:32 AM
Apr 2019

When I got my diagnosis I wasn't sure if this would be something to "get over" or something that would change the remainder of my life. Apparently, it was the latter. Surviving with grace and humor is the challenge, and you are doing just that.

alfredo

(60,071 posts)
44. Thanks
Wed Apr 24, 2019, 01:37 PM
Apr 2019

I got my PET scan results. No overt signs of cancer, but they still want to do a biopsy. I get that tomorrow morning.

They said there’s some asymmetry in my vocal chords. That explains why I have difficulty speaking loud enough to be heard clearly. My voice is gravely now, not as bad as the singer in Zappas’s Zombie Woof.

I have fallen in love with Collard greens with Turmeric, AKA Gomen Wat.

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