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climbing that mountain

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Hey everyone,

Just wanted to update you all, speech therapy is going really well. I go 3 times a week now and starting tomorrow(just in therapy) I am moving up to oatmeal! I'll tell you the stuff we realize during the fight and the after math from the fight is endless. I would never have guessed how many parts of your mouth and throat are involved in your ability to swallow. It sure makes you realize again, you shouldn't take ANYTHING for granted. When I (notice no doubt there)get to eat again, I will be cautious what I chose to eat, I want to respect my body and not gain any weight back and make sure I am always taking vitiams to keep me healthy like the Ensure Plus Nutrition does, I. Feel so good interally on that, I would be fine staying like this except for the darn DRY MOUTH AND THOART..UGH!!!! Hope your all well, and your all in my prayers!

God bless all of you,

Rachel

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Rachel,

 

I love Oatmeal; maybe tomorrow I’ll have some in support of you.

 

I am glad you are “feeling good internally”.

 

Best,

 

Matt

MarineE5
Posts: 744
Joined: Dec 2005

Rachel,

I'm just throwing these two suggestions out there for you or anyone to try, these help me during the day and even at night.

I chew, Dentene Artic Ice gum during the day when I am doing some chores around the house. A sip of water just before I put the gum in and just after gives me some moisture for a spell. If I am not chewing the gum, I use the Biotene Dry Mouth Spray, 2 squirts under the tongue seem to work pretty well. I forget who mentioned it here, they suggested to spray under the tongue verses directly into the top of the tongue and throat.

Anyway, these 2 things help me. Oh, just before turning in, I do the spray as well. I don't wake up as much with the dry mouth during the night.

Oat meal is good, keep inproving, I am sure you will.

My Best to You and Everyone Here

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Rachel,

I truly understand what you're dealing with. Swallowing is something we take for granted. We have no real understanding of the physiology that goes into it until you lose it. As one who is struggling greatly to maintain an "instinct" by having to do exercises, it throws the psyche for a loop. The same goes for anyone who has been in some way, shape or form, physically compromised by cancer. 

Oatmeal is a huge victory. When I saw the subject and it was about eating, the inage that came to mind was from "Close Encounters of the Third Kind" where Richard Dreyfuss zones out at the dining room table and makes the mountain that the aliens were coming to out of mashed potatoes. ;)

Deep down with a little help, the instinct is still there. Keep up the good work. You're an inspriration to us all! 

"T"

wolfen's picture
wolfen
Posts: 1169
Joined: Apr 2009

Just remember the story of "The Little Train That Could". Start every day with "I think I can, I think I can" and before you know it, you will be swallowing great.

Luv Ya,

Wolfen

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Wolfen,

I'd rather borrow whatever chant you use to get through one day to the next. Anyone would be blessed to have a caretaker like you. When hubby gets better, make him take you on BIG TRIP! You truly are an Angel on Earth! Thank you for your kind words and I will say it everyday and continue to pray for you and Hubby(especially with the Ambien thing)

God Bless,

Rachel

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

T,

My friend, I pray for you everyday. I am doing the exercise that you were talking about before, I think that is the one where you bite your tongue and swallow, not too bad for me, but I can't imagine with your surgeries,biopsies,and rads how you do it and you call me an ispiration, you are mine both physically and spiritually.

I was told today, I will never lose the tube, it will always be my main source of nutrition, I will be able to eat food on my own outside of therapy maybe a meal a day, or socially like out to dinner with my boyfriend Chris. That's okay with me, when this started I asked God to just let me eat something everyday and I could live with it, and it seems he is answering positively to this prayer. Not sure at what level of food ill be discharged at, but I do know that no one expected this progress at this point and I have only the Lord to thank! He gives me strength, contacts to pray for me( like yourself, and I for you and everyone on this site daily) and the intellegence to my therapist to divise a plan to get me further. It is His path and I choose to follow Him, for with Him hope survives.

At this point on exercises I do at home 20 times a day I can have Mango waterice, YEAH, and today @ therapy I had mashed potatos and chicken gravy(an Irish girls dream!) And it was like Heaven in my mouth, 1 happy hour!

All my luv and support,
God Bless Tim

Rachel

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Rachel,

From never eating normally again to a meal a day is HUGE! I'd say He was listening! I had a slight improvement snce iyesterday as I'm back to soft foods. Mashed potatoes and scrambled eggs etc... LOVE water ice but to cold for my mouth at this point  :(

"T"

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

T,

I am so happy for you! I think you've been through the ringer times 10 with your fight, so anything that brings you the slightest pleasure is awesome in my book! Eating even that little was giant, I can't tell how much we learn through this process that I wish I didn't have to know. Lol

Keep fighting buddy and updating positive results. He is listening and answering you too!

God Bless and love to you,

Rachel

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

If they told me "you will never lose the tube...it will always be your main source of nutrition".....I'd be instantly in a challenged mode....just to prove them wrong....You've come a long ways since you joined up here....at that time you couldn't swallow anything, and today you were fullfilling an Irish girl's dream....what the hell do they know????

Hang in there and show'em!!

p

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Phrannie,

You know too well already, of course I will face that challenge, love to stuff words down someones mouth who says I can't. I already did to first speech therapist who said id never swallow again as soon as I swallowed my first spoonful. Of mashed potato!

Your a girl right after my own heart.

Love to you!

Rachel

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

We're behind you pushing you up that hill, waiting for the ride down the other side...

Best ~ John

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

John,

Thank you for the very loud, healthy laugh that just sprung from my lungs! Perfect timing!

God Bless you funny man,

Rachel

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

Glad you’re doing well in tackling the swallowing. I’m sitting here trying to bite my tongue and swallow and I have concluded I will go back to mastering walking and chewing gum at the same time.  One of the things I ate a lot of during the retraining to swallow thing was milk toast. Toast two pieces of bread, butter and salt and pepper them and pour warm milk on top. I am with Marine and “T” on the oatmeal, I gained a new respect for it since my ordeal.  I hope those mashed taters you had at therapy were made with real potatoes, I am thinking NOT.

One thing I've learned after the cancer ordeal is I will never enter any type of food eating contest, even a close second is not in the picture.

Haven’t been on the site for a while but seen your post and had to stop by and say HI!!

Enjoy the day

      Jeff

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Jeff,

I was up at Lake Wallenpaupak for the weekend with Boyfriend Chris and daughter so I didn't get to answer you. We don't have internet at his cabin. Now that said, "Milk Toast". I am dying for food everyday, but I think I would rather have Ensure forever than that! Lol. She kind of implied that some of my favorites like Chicken Parm, Pizza, CHICKEN quesadas are probably not in my future, and I say "the He.. with that, I bet I do!" Another favorite thing of an Irish girl, tell me I can't and I will!

Take care and God Bless,

Rachel

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

rachel, glad u get to eat some real food.  keep up the good work.

God bless,

debbiejeanne

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Thanks Debbiejeane!

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

You always have such good advise for everyone and words of inspiration. You sound like a fighter and always so positive - I know you will be eating and speaking really good in no time. Wishing and praying the best for you.RRRRRoar

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Roar ! I don't know how you stay so positive ! And you are so good with words

and inspiration !!

Peggy

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

Roar and Peggy,

Thank you for the compliment, I truly believe I was led here to give advice to whom ever I can, and to gain the strength I need to get through my ordeal from a family of folks who know where and why I am here. My family is very supportive, but noone understands as well as we understand each other. As far as the words I write, they come straight from the Guy Upstairs, trust me. I read something and feel driven to respond and the words flow from my hands as I type but they are put there by someone way smarter than I could ever dream!

God Bless to you both, and if I helped you, thank you cause that is what makes me happy!

Rachel

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