Dear Sweet Elena,
Thank you for such kind words though I don’t think I offered to do anything that I would pray one of my many friends here would offer to do for me. I’m a veteran at this since I was dx. in 1994 though I have had my share of major problems, I am giving leukemia a run for its money. I will Never give up on this fight. It was very sweet of you to take the time to even comment. You made my day. Be well and Always stay strong. Patty

Posted on March 10, 2010 at 10:19:14 AM by ibpatti32

Thanks Elena! I’m doing much better. I have a PET/CT scan next week. Cancer appears to be in remission!! Tell about your current status. I’m praying for you.

David

Posted on March 6, 2010 at 10:33:22 AM by decraig

Clean, clean, clean, is my favorite word! Great news and so happy for you.
We have a place called the Healing rooms nearby and I have gone a couple of times. Same type of thing…scripture and people who pray over you, but I like that you know who is praying over you. The stanger thing is a bit difficult, but I have decided it was needed so sucked it up and went. Whew! Cancer has certainly brought me out of my shell.
Praising God for you news and for you!
Blessed be today!
Larissa

Posted on February 18, 2010 at 8:28:20 AM by larissa

Wow, Healing school….I love it, what an awsome thing for you to have available to you! Are they following a certain book, I would love to have a name so I could look into it.
Yes, positive, positive, positive is the key…that and a smile. I always find that if I plant on a smile (in the mood or not) the world smiles back at me and I soon feel as happy as the smile on my face.
Thank you for the “get well”...I still feel yucky, but it is not getting worse so that is a good sign. Colds just take time to get over, so I have to be patient and attempt to rest…not something I am good at lol.
Take care sweet lady and know continued positive outlook!
Larissa

Posted on February 18, 2010 at 6:23:13 AM by larissa

Thank you my friend, I dreamed that we met in NYC, and you know what? You were talking fine and we both chowed down a wonderful lunch and a wonderful glass of wine. I woke up and knew both of us will be fine and we will meet someday, just a great feeling I have! In the meantime I am proud to call you freind Elana, thank you for that!! Luv Val xoxoxoxoxo

Posted on February 16, 2010 at 9:43:21 PM by val

Elena,

Don’t ever feel bad for ranting. That is what I am here for to listen and to support. I know the fear believe me. We might have our cancers in different spots but I think they are both rare right? It is a scarey journey and a lonely one sometimes. I just know you are going to be ok…..We all need to help each other through this. Please feel free to contact me anytime. I will be here for you.

love

Nancy

Posted on February 6, 2010 at 8:59:49 AM by nancyp

Elana I was talking to some medical people yesterday and found out about Vitalstim, they said it is for people with swallowing problems. There is lots of info on the net about this, not sure if yo have heard about it or tried it, if not it is worth a shot asking your doctors about.
Anyhow hugs for you my friend LUV Val

Posted on February 5, 2010 at 12:22:31 PM by val

Elena,

I am doing ok except that I have been really tired and I hope it is nothing but the weather doing it to me. I have a doctor appt. tomorrow with my medical oncologist so I am a bit nervous but he is my favorite doctor.

It is freezing here. We have only been in the single digits for the past few days :( ugh! But I am happy to be alive and feel it.

Take care

Nancy

Posted on January 31, 2010 at 2:28:21 PM by nancyp

Good for you for picking up that book and giving yourself more knowledge for power. I hope she has some insight that will give you strength for what you go through in this life! I am proud of you and will pray that you can stick to it and get to the end. :). Let me know how it is so I know whether to read it.

Larissa

Posted on January 27, 2010 at 6:47:53 AM by larissa

Elena-

You never bother me and it’s why I’m here on the blog…to help when I can.

I’ve been down for a week with a bad cough and subsequent headache but after a couple of doctor visits I’m doing better.

The stretching procedure is pretty simple, when I had it done they place a device like a balloon in your throat and then blow it up here and there to stretch and loosen the throat. I’ve never heard of a throat shutting down. The sensations you feel and what actually is happening are different. Just keep bugging your oncologist as I don’t think another doctor would get involved at this time.

Ron

Posted on January 26, 2010 at 7:17:01 AM by roncancerfree

hi there thanks for the comment your treatment was very similar to mine i was very lucky and got over it very quickly i live in the uk so the treatments are slightly different re the throat honey and soluable zinc tablets new zealand honey is the best if you can get it take it in your tea coffeee whatever you drink it will help trust me for the skin coco butter i recovered very quickly but didn’t decide to get involved in this type of this until recently give me a phone or drop me a mail we can chat some time

all the best

d

ps i had the tube now have two belly buttons

Posted on January 25, 2010 at 11:41:06 AM by tonsilchap

Elana Thank you so much for your kind words that you always give me. You totally inspire me, and really help in keeping me going! You are a good friend and I love you for your gentleness and kindness. I hope that the days in your furture treat you good because you do not deserve to the slow healing that you have. I met a volunteer at the cancer institute, with base of tongue cancer. She also is a gentle kind good person like yourself, and reminded me of you, and told her that. I asked her if I could give her 2 hugs … one for her kindness and one for yours. T%hank you so much for being there for me. I am praying and hoping that you healing gets faster and you heal good. ((( HUGS))) Val

Posted on January 17, 2010 at 9:36:13 PM by val

Elena,

I just noticed that you’re not logged on. That’s why you couldn’t see the PM

Ron

Posted on January 14, 2010 at 7:24:43 AM by roncancerfree

I had sent this as a Private message…

Elena,

You’re so sweet. I haven’t been able to make my book draft long enough yet. My editior say I need more info (words) so I’m gaining a lot of information from the blog and other sources.

If you send me an e-mail I return the e-mail with what I have, it’s in WORD. I think you’ll enjoy reading it, in as much as I went through hell and survived. I say that not as a hero or anything but to inspire people like yourself, “If he could survive that, I can survive this”

I also have a lot humor in the book as I describe events that take place so folks know that it’s not all doom and gloom.

I sent it to Greg and he said it really helped him and put him at ease.

Semd me an e-mail at Ron@ronpost.com If you want to know more about my background check out my web site, www.ronpost.com

Love and hugs always my friend.

Ron

Love and hugs

Posted on January 14, 2010 at 6:57:04 AM by roncancerfree

Dear Elena
First I have to tell you I love your name. Elena is what we named our daughter….! Thank you for your note on my blog. I know we all have experienced these feelings and we are the only ones who can understand. I also know that we need to be brave enough to talk about it. I’m so glad that we have each other. I hope you are feeling better these days. I hear that your treatment is one of the hardest…harder than anal and my heart goes out to you. Today I do not have time to make the post I thought I’d have time for but I will try tomorrow. So much love, Nova

Posted on January 12, 2010 at 1:25:13 PM by novasprick

Elena—
Thank you so much for the kind comments on my blog—you are very sweet! I knew I was discussing a controversial topic and that everyone must make their own decision. I just want to keep reminding people that such a vaccine exists and encourage them to research it and decide what’s best for them. I hope you are doing well and I wish you the very best in 2010!

Martha

Posted on January 11, 2010 at 4:49:49 AM by mp327

Hi Elena. Sorry it’s taken me so long to respond to your questins. Most things taste ok now. Some things don’t. Most noticably wine and tea, and tomato and vinagar based sauces and dressings. I do take small bites because I don’t think my swallowing is as strong as it used to be. Sometimes things get stuck halfway down. But other than that I feel good. My mouth gets dry during the night but I just get up and swish a little Biotene and then I’m good. It’s all about adjusting to new circumstances. I always have a small bottle of Biotene in my purse for after meals out. How are you doing?

Posted on January 9, 2010 at 11:51:31 AM by indiogrl

Hi Elena!

Happy New Year! Here’s hoping that our 2010 is less eventful than 2009….or at least only eventful in good ways. :) I’m sooooo relieved to hear that your PET came up clear….big YAY! So sorry to hear you had to have the neck disection as it sounds like a very uncomfortable healing process to go through. How are you doing now with your healing? I empathize with you about being sick of being sick. Just hang onto those thoughts that there WILL be brighter days ahead (even when it doesn’t feel like it). :)

Your new photos are great…you look terrific! Your kids are so sweet.

I posted an update this morning on my healing process. I feel pretty good, not 100% back to normal, but hoping I’ll get there in the next few months. The “mental” part of cancer is my biggest challenge these days. Well, I suppose we’re in this for the long haul…cancer fightin’ gals that we are. ;)

Take good care and hope to hear from you soon.
Love and Hugs,
Kim

Posted on January 4, 2010 at 10:50:04 AM by kim951

Dear Elena,

Thank you for your thoughts and prayers. As I read your comment it struck me that my feelings may be coming across in a negative manner…I do want you to know that as I shared briefly what I have gone through it doesn’t begin to capture all the good life I have lived with it! I look forward to every day and spring from my bed daily with a true smile on my face and a tingle up my spine for what the day has in store for me. This disease is a part of me, but it is not me. I am and always will be an active participant in life

Gods blessing to you, my new friend!

Larissa

Posted on January 2, 2010 at 2:05:32 PM by larissa

Elena,

Thank you so much for taking the time to wish me a Happy New Year. You’re so sweet. You too have a wonderful evening and I hope the new year brings good health and happiness to all us.

Love and best wishes

Ron

Posted on December 31, 2009 at 9:35:55 AM by roncancerfree

Hi Sweetie I’m glad you talked with your doctor and that he made you feel better…and then you made me feel better! :-) I hear ya on the just getting up and having that cup of coffee…such simple things we will never take for granted again will we? You are right Elena..we will beat this beast…kick it to the curb and take our life back!! You keep hanging in there and so will I!! Thanks for lifting my spirits Hon!
Big Hugs,
Trice :-)

Posted on December 17, 2009 at 2:38:26 PM by patrice

Hi Elena,
I was so happy to hear that the doctor said your cancer is gone!! I totally understand the rollercoaster ride Hon…I’m there right with you. I just want this to be over and to have my life back!! I called the nurse yesterday and asked her if I could go back on my hormone ‘cause I think that might help get my mood leveled again. Being a very happy person and suddenly crying for no reason has me feeling a little looney! LOL I totally realize we are entitled to these feelings but I just don’t like them that’s for sure! I’m feeling really good other than the mucous issue which seems to be slowing down. I’ve also lost my voice. It comes and goes. Now I’m trying to figure out when I’ll be able to start eating and get off of this tube.
Hang in there Elena! Hopefully we will be able to get off of this rollercoaster real soon
Big Hugs!
Trice :-)

Posted on December 16, 2009 at 5:41:25 AM by patrice

My voice is hit or miss each day. Because of the dry mouth, it can get very horse. Starts out somewhat OK and by the end of the day I am croaking. Heidi said her voice came back after 1 year. Waiting for that.
A

Posted on December 14, 2009 at 12:22:39 PM by anna

Hi,
I had the neck dissection before the radiation so my neck was healed from the surgery before it got clobbered again. I can tell you this—its going to take a long time to heal. With eating, you need to start with very small bites of pasta. I would eat a little bit and swallow with water and would choke constantly but I kept trying. I could eat around 4 weeks after the dissection but with the radiation it took alot longer because my mouth, tongue and throat were in so much pain. You are dealing with the after effects of both right now. I still have some mucus issues so I take benedryl at night before bed. My tongue still gets sore when I eat something hard. Today, I ate a chick-fila chicken sandwich and now my tongue is sore. I will go flush with caphasol which helps it heal. I don’t know what else to tell you except I know you are a go getter and used to snapping back quickly. This you will not snap back from so fast. Like I told you before, I am giving it a year for all the pain to go away. Jacques is also right about the scar. At first the skin on your neck is numb. After about 4 months it gets tingly and itchy as the nerves reconnect. I am going through this phase right now. Its stiff and uncomfortable. I’d love to tell you all is well and easy from here but each day brings a new challenge. I do think an antidepressant is a good idea. I wish I had gone ahead and taken some. I am ok now but was just as depressed as you are. Take care and let me know what else you need from me—I am here for you.
Hugs,
Anna

Posted on December 14, 2009 at 12:17:29 PM by anna

I wanted to add that the neck dissection heals very quickly. You cannot even see the scar on my neck anymore. Your neck will be stiff for awhile and your shoulder may hurt (mine still does) but it gets gradually better.
Hugs Again—A

Posted on November 23, 2009 at 3:55:50 PM by anna

Hi Sweetie!!
I’m guessing you are at about 14 weeks out. That would put you where I was at the end of August. I was still in alot of pain. Even today, I had a tuna sandwich for lunch and my tongue is sore. I certainly understand the depression you are feeling but coming up, probably in about 3 more weeks you will have another jump in healing. You really HAVE to give it 4 months before its anywhere near normal. I am now at six months out and still things taste strange. I’m so sorry you have contracted pneumonia and got the tube back! I know you had many issues with it before but remember it comes out very easily. Elena, I am still using ensure at least once a day. I am down from 4 cans per day as I am able to add more food but some days I just don’t feel like eating very much since most things still taste strange. Its totally not fair. I have found that lamb chops (rack of lamb) tastes great with mashed potatoes. I get filet steak with light or no seasoning since any kind of seasoning seems extremely spicey to me. I know that this will pass. I KNOW that by my one year point I will be back to nearly normal. That is what I am striving for. You will begin to feel normal VERY soon. I am your greatest fan. You have been so very strong through all this, of course you are going to be down once in awhile. I felt the same way at 3 1/2 months like is it ever going to end??????? It will for you I promise. I asked my radiologist when I would be normal and he said you just have to put in the time. Time is so easy for those who aren’t in pain. My heart is with you my dear. Just HANG TOUGH a little longer—Big Hugs and Kisses
Anna

Posted on November 23, 2009 at 3:50:48 PM by anna

Glad I could help, I see you’re no longer “Anonymous” now…..LOL

Hugs my friend,

Ron

Posted on August 6, 2009 at 10:58:19 AM by roncancerfree

Private comment:
Elena,

This is a private message so I don’t embarrass you. The reason it shows “Anonymous” is because you’re not logged in. Sometimes when cleaning the computer or it just being a computer, this happens. Check the top right hand corner of the page and see if you’re logged on. Once logged on it will show your user name.

Ron

Posted on August 5, 2009 at 6:42:05 PM by roncancerfree

Posted on August 6, 2009 at 6:46:47 AM by roncancerfree

Elena,

Good luck in your fight, let me know if you need any help or an unbias ear to listen to.

Christian

Posted on August 3, 2009 at 1:23:42 AM by cdemry

You are allowed to be in a funk any time you feel like it PERMISSION GRANTED!!
This is A LOT to deal with and you are handling this mess with grace and style which is totally not necessary as far as this midwestern girl is concerned.

Posted on July 31, 2009 at 7:55:10 PM by kwillis38

I’m glad to hear chemo #2 went well. Hope you’re getting lots of rest….it really does take alot out of you (radiation plus chemo).

You sound like you’re in good spirits, too. Which is great because I think the more we can hold onto the good energy, the better it is for our health. I agree, we’re both going to conquer this beast!

I’ve been feeling good most days these week, although I’ve been tired and a bit queezy at times. Today I had a nice burst of energy so I took the dogs to the groomer before radiation and picked them up this afternoon. They now look all cute and fluffy! :)

So it sounds like week 5 is when you’ll start seeing some pinkness in your skin? I was wondering when that would happen….so far my neck looks about the same, but I’m anticipating the “sunburns” soon.

I agree with you… whatever it takes to get rid of the big “C”!

I haven’t started using the PEG yet, although my dietician encouraged me to do a practice feeding with it, I haven’t done that yet. I flush the tube twice a day with water….the water shooting into my stomach feels weird (and too cold)....probably since it’s not going down my throat and being warmed.

I can’t put any water down my PEG when my stomach is growling because my stomach will “spit” the water back up and out the tube…I’m assuming it’s because the stomach is moving around/contracting. The first time this happened I was freaked out….and a little unhappy at my stomach for spraying me with water…lol.

I really want to eat food (even if it’s liquids) by mouth as long as possible. I’m still having a hard time wrapping my mind around having to feed myself through the PEG….especially since I get such great pleasure out of eating…a true foodie I suppose…lol. But if I have to use the PEG then I will. I guess I’m just mentally fighting it for the time being.

We’re in the home stretch indeed….woooot!! My thoughts and prayers are with you, too.

All My Best,
Kim

Posted on July 31, 2009 at 5:47:35 PM by kim951

Hi Elena,

It’s so good to hear from you. That’s interesting about the radiation/calorie thing. I’m still trying to eat up but it’s becoming tougher.

Since you’re one week ahead of me in treatment I’m curious about what you’re still able to eat at week 4. I just finished week 3 and I can’t eat bread etc. anymore. But still eating pasta, eggs, pudding, etc.

I’ve found that if I hold aloe vera gel (food grade kind, not the cosmetic kind) in my mouth for 20 minutes or so 4-5 times a day it helps alot. It took the sting right out of the painful spots that started to develop on my tongue and inner gums.

I hope your chemo nausea passes quickly….it’s no fun at all. :( My favorite part of chemo was drinking coffee, talking to my nice nurses and watching tv. Next round of chemo there will be no coffee drinking since my throat can’t tolerate it. :( Was this your last chemo?

Hang in there….you’re doing awesome! We’re gonna give this cancer thing a run for it’s money. :)

All the Best,
Kim

Posted on July 31, 2009 at 5:00:11 PM by kim951

Hi Elena,

Thanks for your support – it’s good to hear from you! I think of you often, too. We’re definitely treatment buddies since we’re both traveling down similar paths at the same time. :) I’m starting to get a sore throat, too….boooo!! Are you doing the salt and baking soda rinse? My dental oncologist told me about that one. Also, my mouth has become too sensitive for spicey foods….I’m gonna miss pouring hot sauce all over everything!! :)

My dietician and docs all shared the same thing with me which is “we don’t want you to lose weight!” I reeeaaallyyyy want to lose 20 pounds. I want to squeeze into skinny pants again! I keep hearing I need to keep the weight on though…so I’m off to raid the fridge for some chow mein from last night. Keep the faith my friend! I love your outlook!

Hugs,
Kim

Posted on July 27, 2009 at 6:40:29 PM by kim951

Hi Elena,
No, I did not have the Ethyol (not sure how to spell it). My doctor said it is an old holdover from WWII, its very expensive, and it doesn’t necessarily do any good. He said because nowadays they are using IMRT radiation that they can target around the salivary glands and preserve them at about 60% or more. You might want to ask you doctor about this. Thanks for the support!
Hugs
Anna

Posted on July 23, 2009 at 7:53:37 AM by anna

Hi Elena,

It’s great hearing from you! Yep, week #1 is done for me and I’m working my way through week #2…yay! I was pretty nauseated most of last week after chemo…that passed on Friday night and boy was I happy when it did pass. :) Also, my mouth is dry and throat is a bit tight, other than that no other rad side effects.

I read your entry that your PEG tube was taken out..ouch! I hope it wasn’t too painful when they took it out. I bet it feels great to be PEG free. I struggled with how to hide it under my clothes…finally I gave up and decided however it falls on any given day where it’s most comfy is where it’s staying…haha!

Regarding the dry mouth question you asked about on a previous post…fyi…I’ve been chewing Biotene gum for dry mouth (look in the dental section at the drugstore) and sugarfree lemon drops. Both seem to help me.

You are such a trooper and I really enjoy reading your blog entries! My thoughts and prayers are with you. Take good care and drop me a line when you can.

Posted on July 22, 2009 at 8:13:37 PM by kim951

Hi Elena,

Wow, what an experience…..sorry you had to go through that. Although my cancer experience was a rough journey, it was also 15 years ago and as I read the blogs everyday I’ve learned so much about the new procedures, albeit similar, the medicines have improved so much. I will do my best to answer your questions, but keep in mind my surgery was so different than yours and many that I read.

During my first go-round with radiation I didn’t have the PEG, it wasn’t discussed or even mentioned. If you read my blog you would see that my first bout with radiation wasn’t a very good experience. Subsequently my treatment was suspended.

When they subsequently found my primary (in the Tonsil) my surgery required a procedure they don’t do much of anymore, The Flap, where they removed my mandible (lower jaw) and open my face, my surgery lasted 14 hours and when I woke up I had the PEG among others already inserted. I was in ICU for more than 2 weeks so other than vomiting for quite some time the first couple of hours after waking up, I didn’t feel much. I don’t know if the nausea was from the PEG or the amount of anesthesia I had been given. I was never told.

I needed or had to have the PEG as my jaws were wired shut for a couple of months, then radiation. I had the PEG for almost 6 months The PEG became my life support and other than it hanging from my abdomen, I didn’t know it was there and feeding myself with it became a way of life for many months. I never experienced any discomfort with it.

My salivary glands; one was surgically removed during the surgery above and the other was radiated out during my first go-round. I’ve been without ever since. For many years a water bottle was an extension of my right hand. Now it’s quite a bit better, I do have saliva and can eat almost anything. I still have water close by, especially if I’m talking a lot or eating certain foods.

If you had such a bad experience with the PEG after it was inserted, I would guess it was a bad procedure (placement) from the start. Whether you’re going to need it depends, everyone has a different reaction to radiation treatment as the amount of Rad’s and placement differ. Currently I have two other people I communicate with that have tonsil / throat cancer and are having radiation treatment, one uses the PEG and swears by it and the other has it but doesn’t use it. Go figure…

I’m sorry I couldn’t give you anymore information to ease your mind and concerns. If you have to have the PEG inserted again, I would hope the doctor will take special care this time. That said, as the doctor pointed out, play it by ear. If you don’t want it inserted again, You HAVE to consume liquids to keep from dehydrating as you know. I found that using a straw really made swallowing easier after my PEG was removed.

Good luck my friend, my prayers and thought are with you. You sound like a strong and positive person, you’ll do well and this will all soon pass .

Hugs,

Ron

Posted on July 21, 2009 at 8:02:14 AM by roncancerfree

Hi Elena!

Thank you so much for the kind comments. I had my PEG removed last Friday.

At 2 weeks into treatment… I didn’t use the PEG either. It just sort of hung there coiled up as a “backup” plan if I couldn’t swallow.

It wasn’t until the 6th week of radiation that I actually started to put Ensure in it. And I always added a little extra water right after. If it wasn’t for my previous stomach issues… I probably would have used the PEG a lot more. But it seemed everytime I used it for Ensure or even just water… I would have to give myself a nausea injection later that night.

So having this difficulty on top of the radiation… it made me very determined to start to eat. Even if it was only 5 small bites at a time.

I still have some very slow healing sores on my tongue (the side which I chew). This is making eating solid food quite a task. I keep putting Ambosol on it and it does numb it for a while.

But most importantly… if you can still drink (even water) through your mouth… you are not only keeping hydrated but you are using the muscles. It didn’t take very long until I started to experience the “wow” I can still chew, swallow and talk. When you stop chewing food for nourishment… it does take a little while to re-establish that easy task. But if you can force yourself to take at least 3 bites of something every few hours… then you will retain the ability to chew and it won’t take as long to recover from that.

I hope this helps you a little. I just got home today and I had to respond to you first. So I need to read your posts and get the whole picture!

And there are a few others on this site who are at different stages than we are and they also have given me so much good information about what to expect.

I’ve found that this site is made up of some very intelligient, motivated, spirtual, compassionate people you will ever have the privilege of meeting! There are so many more adjectives I can throw in there too!

I hope your 3rd week will go by fast and you are blessed to have as few side effects as possible.

You are strong and the whole lot of us is strong!

Many hugs and blessings,
Elana Rose

Posted on July 20, 2009 at 12:41:18 PM by elanarosegraves

Hi Elena!

Thanks for the great comments! Sounds like we both have the same type of cancer (only at a bit of a different location)....and we’re both starting radiation at basically the same time. Yeah, I didn’t know about all the different areas for primary cancer until after I was diagnosed and started doing research…who would have thought!

It’s a bummer to meet under these circumstances, however, it’s really comforting to meet others who are going through the same thing. I’m going to think positive thoughts for you as you start your radiation! Have you completed your simulation yet? I go in on Thurs for mine.

Yes, I would love to stay in touch…I’ll send you an e-mail so that you have my e-mail addy.

Stay positive….you have a wonderful outlook!

Best Regards,
Kim

Posted on June 23, 2009 at 10:43:04 PM by kim951