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Hi Fellow Fighters!

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Just wanted to check in and say Hello. I do read all your posts because you have all become my family. I have been busy with my 80 year old Mom, who has been it 2 Nursing Facilities, and hospitalized twice in the last 5 weeks. The care in these places are incompetent, and I feel sorry for the elderly who have no one to be their advocate. I must check in each day, and show up at different times. The Drs. STILL have her medication wrong! This situation has keeping me hopping! :)
Unfortunately, my nutrition has continued to decline. I am now 110 lbs at 5'9". I began this journey at 138lbs.
I completed treatment on 10/16/09 and clean PET on 1/14/10 Yippee!
Finally, I contacted a nutritionist, (again) who actually returned my call! She was very perturbed that the Cancer Tx Ctr did not contact her much earlier. I have lost most of my muscle mass, and the next step would be a feeding tube in the hospital - No thank you! Anyway, I am now taking Carnation Instant Breakfast VHC which has 560 calories. My MD gave me Megace, which takes two weeks to kick in and stimulate appetite. Thank goodness for anti-anxiety meds, it helps to keep my focused on eating every two hours or so and staying positive. It helps keep those negative demons away, as does the Good Book.
As I have previously posted, I did refuse the peg tube during chemo & radiation, and had to switch Oncologists half way thru, because he began to treat me with disgust. (Great bedside manner!)I had no problem completing treatment with little weight loss, but the side effects of these poisons were worse than the TX! ( Thrush 4X - swish & spit solution, Sore mouth - Hydrocodone syrup, metal taste, no appetite, heightened sense of smell- P.U. meat!
I see my Dr in Mt Sinai in April, so am trying to "bulk up" b4 than! Ha ha!
Just wanted to say Thank you to all for you valuable threads, of info, whining,facts and fear! Again, I need to stress to all the New Members to stay on top of these Drs! Be your own Advocate! You can do it! I am living proof as so many others here are! God Bless you all, and keep you!
P.S. - After reading your threads - I am going to look into some mj for an added appetite increase, but it may only get me into the "cleaning the house mode" :( Lol! I'll keep you posted! Love & Prayers! Patty

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am happy your pet scan came out clean. I hope you can start gaining weight. Where do you buy the high calorie Carnation feeding?
I havent even had my surgery yet ( neck Disection) but I read all I can on here.
Are you back at work?
Mary

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Hi Mary - I feel like we are already friends! I read your posts, and truly understand how
you feel with you surgery on the horizon. I, too have undiagnosed primary and hadtwo lumps in my neck. The Dr decided to go with chemo and radiation, instead of dissection in my case.
My neck dissection would have been down the both sides of my neck - frankenstein style! OMG - I did not know what to do! I had many pity partys, early morn when kids went to school, and hubby to work, and I could be alone. I had to let those feelings out to I could "get tough." Waiting and counting the days is the worst. My MD prescribed Valium, which saved the day for me. I cut them in half, and only needed 2.5mg 2X a day, if that. It made me so less anxious. I think of you keep in my prayers. I know you can do this, just think - they will go in a remove the da** thing! It will be gone!
I got laid off two months b4 I was diagnosed, so I believe I am officialy retired now! Lol!
The Nestle carnation Instant breakfast VHC you can get online, with free shipping for 24 cans/$60 - free shipping. I called my pharmacist, and he had it the next day for $42.00.
It comes only in vanilla, but tastes good. I was using Ensure Plus, but that was only 200cal(?)
Stay Positive! Talk, complain, whine, cry, and yell if you need too! It's all healthy!
How do I know? I learned it all here - from these wonderful veteran survivors! Love & Prayers, Patty

pk's picture
pk
Posts: 192
Joined: Aug 2009

Good to hear from you again. I know how stressful it can be having a parent in a nursing home. We were lucky in that the one my mom was in did not have staff change overs and anytime we visited she was being attended to very well.
I hope you are able to find the magic fix to help you gain back some weight. The oncos don't like it when the weight loss gets to be too many pounds or continues. My husband lost about 40 lbs and has gained a few back and is holding. He had it to lose so looks great and feels great. His taste is off but he is hungry and eats even if things don't taste quite the same so losing weight isn't an issue anymore. When it was a problem, he found that supplementing meals with Boost Plus helped prevent weight loss.
P

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Hi P - So glad to here hubby is doing so well! And he should be - he has a great caregiver by his side! ;)
I am actually hungry, and my saliva has come back a bit - nights are the worst, between the H20 bottle and trips to the bathroom! Lol! I feel like my whole day is spent eating now, but can feel the difference just in a few days in my energy level! Yippee! Thanks for the post! I love you pic - what a great family! My prayers are with you both! Patty

Fire34
Posts: 353
Joined: Feb 2010

Hello Patty
I know what you are going thru taking care of parents. My Mom had breast cancer that spread to bones and uterus. There was nothing our local hospital could do for her so they sent her home. Lucky where we live in Northern IL they have Hospice. We used the hospice in the neighboring county and they took great care of my mom, in her final month.
I wish I would have had my chemo & radiation before my mother. That way when she told me everything was alright I would have known they were not.
I am 3 months out from having SCC. My oncs put the tube in whether I wanted it or not. I lost 30 lbs and am working on regaining my strength. While on the tube I used Ensure and IsoCal 1.5.
I am just getting an appetite back, still no taste buds or saliva. The doctors that treated me had me doing all sort of jaw exercises and neck exercises to keep things working. Godd Luck on getting your weight/strength back
Dave

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Hi Dave
So sorry to hear about your Mom. My deepest sympathy for you loss. I can see the light fading from my Mom's eyes day by day, and it is heartbreaking. I thank God,I had the foresight to see an Eldercare lawyer last year to get her affairs in order, because I do not think she would be able to make any of those difficult decisions now. Plus, the Drs. cannot avoid me - I have all the paperwork! Lol! They hate to see me coming!
Saliva & appetite was very difficult. My appetite finally returned about 3 months after TX, but was too busy to eat. I know now how important it is now, not to ignore that signal to eat. Hindsight? Hee Hee!
Biotine wash, toothpaste, and balm helped me. Keep up those exercises, remember- if you don't use it - you lose it! Thanks for the post and good wishes. They mean a lot! Know my prayers are with you for a full recovery. Patty

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

Hi Patty! So happy for you. A clean PET is always music to my ears.

Mary and for those of us with canned nutrition needs, my nutritionist called me yesterday to tell me that nestlenutritionstore.com has my Boost Breeze. She gave me a one time 20% code, nnstore @ check out. I think that she said you can get an auto ship after that with a 10% discount. While I was trying to check it out, I believe I saw my nutren, and the 560 calorie VHC Vanilla. I have to go back and look at prices. I figure it's worth checking out, she said that there was free shipping, I think.

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

oh, thank you sweet. I hope you are gaining weight too as you continue to fight the fight.
I did not realize just HOW thin one could get - till I looked in the mirror after a shower one day. I look like an After-School Special! :( Keep up the nutrition, as I have lost most muscle mass, and plan on doing some sort of reps - starting with soup cans - if necessary, to get some muscle back in my arms. You are so young to have to endure all this, and I was shocked myself upon learning of my own diagnosis. I soon realized, thru lots of prayer, God has a higher purpose for me. I just wish that He did not have to ge my attention in this way! Anyway, stay strong - you have come so far! God Bless! Patty

P.S."There is nothing to fear or worry about Dear One. You are cradled and protected by the strength and love of God."

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Like everyone else, I lost more weight then I could afford to. I am only 5" 1' and weighed 118 when I was diagnosed, until a few weeks ago I was still at 98 lbs. but have finally gone up to 103!! I eat every couple of hours and drink 3 Ensure Plus each day and I am now finally able to walk a mile each day. I understand what you mean Patty about the "After-School Special" look, I almost cried when I saw myself in a full length mirror for the first time.

I have small hand weights that weigh 1 lb each and am going to use those to try to build up the strength and muscles in my arms. I also have ankle weights but don't feel that I am ready for those yet. The weather has finally warmed up enough (in the 30's during the day) that I can get out and walk every day. I love the walks as I live in the country and walk through the woods and get to enjoy the quiet and beauty that God created, I also spend this time talking to Him and thanking Him for all I have been given. With the moderate exercise and extra calories I hope to reqain all of the muscle I lost during treatment, remember - muscle weighs more than fat ;-) I joke with my husband that this is the first time in my life that I have every had to work so hard to gain weight - LOL

Like you Patty, I was laid off 5 months prior to my diagnosis and because both of my cancers are inoperable and incurable the hospital where I am being treated filled out all of the paperwork for me so I now receive disability. Believe me I would much rather be working but for now I am just thankful to be alive and able to enjoy my family and friends.

My best to everyone, you are all in my prayers,
Glenna

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Hi, Glenna. While I'm a guy and used to be almost twice your size (by weight) prior to treatment, I too lost a lot of upper body strength. I didn't really notice it until the day that I tried to pick up a 50-pound sack of corn and hoist it onto my shoulders, something that I used to be able to do with little effort. No dice.
I got some 8-pound hand weights and started working out with them morning and evening, gradually increasing the repetitions. Then one day when I was wearing short sleeves, I noticed something out of the corner of my eye, in the vicinity of my upper arm. It was a bicep!
Now I no longer have any trouble picking up that 50-pound bag.
Walking is great, too -- now that the *****()@#$ snow is gone.

--Jim in Delaware

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Jim, I'm glad your snow is gone, we will be lucky if it leaves by June - LOL. I live in West Central New Hampshire at the base of a mountain and we still have a foot of snow on our lawn and snow banks in the driveway that are about 6 feet high - ugghhhh!! I am not going to complain though because the temperatures are finally warming up and the sun is finally out for most of the day. I still have to bundle up when I go for my walks but the sun on my face feels so good that I really enjoy my walks. I do most of my really good thinking while I am walking. We live in the country on a back road (most of my road isn't even paved) and I love to listen to the birds and the brook that runs beside our road. I feel very close to God when I am out walking and I often talk to him during my walks, thanking Him for everything I have and all of the beauty He created.

I have managed to increase my walks from a half hour to an hour and feel so refreshed when I get home. Most of my walk is up and down hills which works my leg muscles more than walking on a flat surface. I have to be careful not to overdo it because I have lung cancer also and get winded easy so I take short breaks during my walks, I just find a large rock to sit on and enjoy the scenery.

I decided to start working on my arms when I found out that I still couldn't open jars without my husbands help ;-) I've started with the one pound weights and hope to switch up to the 5 pound weights within a few days. I couldn't believe how much muscle I lost in both my arms and thighs but I am determined to regain most of this muscle before summer (all two weeks of it ;-) I'm too old for a bikini and short, shorts but I do wear sleeveless blouses and don't want the flabby arms hanging down - LOL

Good luck to everyone on gaining back their weight and muscles - I know we can all do it!!

Stay strong and keep smiling,
Glenna

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Hi Glenna
Glad to hear you are gaining! I too have those small hand weight, and took them out, blew the dust off them, so they will be ready to do some reps when I am stronger.It was frightening to look in the mirror and see those flabby upper arms! I will never wear shorts, but would like to wear short sleeves this summer without smacking myself in the head when I wave!
The walking is excellent! It must be so peaceful and the perfect time to get centered again. It's in the quiet moments we can hear His message.
I walk a lot, between caring for Mom at the Nursing Home and my drs, carrying one satchel with her reports, one with my scans. Each weighs about 18lbs! I had to scale them down because anything I was eating before, I was burning off! So, then it takes from the muscle, then after that - your organs! Pretty scary!
Sounds like you are on the right road to recovery, and thanks for giving me hope! It must be just beautiful on that mountain in New Hampshire. My family is from New England, and I spent a lot of fun summers there!
Love & Prayers, Patty

"Thank you Jesus, for all you have given me, all you have left me, and all you have taken away."

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

i was 5'2" and 125lbs before. i was pretty busty. *blushing* between a 34dd and 34G. i was shocked one day when i looked down, and i could see my feet when standing up straight. also was shocked when i put my legs together and my thighs did not touch anymore.

i have totally lost muscle too. we still have snow. i am going to need to do some excersise. i never had to before, my jobs were so physical, i was strong and toned from working.

i need to gain a bit more weight and maybe i will feel better. thanks for saying i am young, but you do not look much older than i am.

hang in there girls, we will get thru it.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi sweetblood, I've never had a problem seeing my feet, my husband used to tease me that my shoulder blades stuck out further than my bust did - LOL. I used to buy my bras at JC Penney because they had ones that were called "almost" and I was an "almost A" (blushing)

Things will get better and, as you said, "we will get thru it"

Stay strong and keep smiling,
Glenna

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Congrats Patty on finishing up your treatments and getting a clean PET....

Glad to see you have retained your humor and wit, it helps a lot....

Good Bless,
John

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Good to hear from you. I was PEG, and might get it out in April if the next Pet comes back clean (got 1/09). Took some 6-months after the last Rad for me to start gaining weight, and now am back to the weight I was before the C took hold= so 9-10 months after the last Rad had gained all my weight back. I can only advise on what it took for me to turn the weight thing around: Ensure, 3 meals/day, and chef-style salads with ingredients friendly to the taste. As for the salads, the fact one can customize it to your liking does help. Hope you put on some pounds, girl.

kcass

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Hi Kent
Praying for your April PET and getting PEG removed. I cannot wait to get this port removed from my chest - it is protruding so much due to my weight loss, I have to be careful nothing rubs, or I may be able to remove it myself! Lol! I started the Megace 3/1/10 and am eating ALL the time! I feel like a man - eating and nap, eating and nap! Hee hee! Sorry guys - no offense intended! I just know from hubby, who is always thinking about his next meal!
The Carnation VHC is excellent 560 cal- but I am eating breakfast lunch dinner, PLUS - hot choc/with marshmellows, choc chip cookies w/peanut butter, fiber bars, cheese & crackers (pre-packaged)! I am starving, but also notice I have more energy. This is soooo not me, but I guess the it is my temporary "new normal." Nutritionist advised (like you said) just add everything and anything to a salad or baked potato to add calories. Good luck & God bless Kent!

Patty

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Thanks Skiffin!
Now awaiting the April one - Lol! If I keep eating like I have been in the last 7 days, they won't fit me in the tube! Hee hee! The thought of seeing my Oncologist and weighing 110lbs scared me into eating! She should be have joined the armed forces! Yikes, she a tough cookie at 5 feet nothing, and 110lbs when pregnant! Lol!
Love your pic, and thanks for the post. God bless! Patty

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Just wanted to say Hi and good news on the scan and eat something will you. I do think exercise is key and also have been doing wights. My son would laugh at me at the trivial amount I was able to lift. Little by little it comes back. My goal is to get strong enought to beat his butt.

pattyanny's picture
pattyanny
Posts: 533
Joined: Jul 2009

Hey ratface!
(You know - I hate calling you that! Lol!) Good to hear from you! I am trying to balance the "man appetite" intake right now, but I do have 3lb yoga weights I plan on starting leg and arm reps with very soon. Right now - bottle caps and the can openers are my enemy! I know how you feel! Baby steps - right? Stay strong and God bless! :) Thanks, Patty

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Don’t know how I missed your post, I am glad to hear you are doing well. I made it thought both times with out the PEG not sure if that was the right thing to do or not but I had a wife who was like a PEG tube and would force me to eat. I lost over 50 lbs in the end and only gained 22 of it back, but I feel really good at this weight. On the mj I was told it cost $280.oo Bucks for a small pack of pills and only $30.oo for a lid from the guy down the street, Government mark up I guess.

Keep up the good work and faith, God bless you

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