Hello, new hear. I am having a biopsy and mapping done this coming friday on the base of my tongue. Two ENT's have told me they believe it is cancer. We just don't know what type or what stage. I have a one week old baby at home. I'm terrified.
I've had horrible ear pain since April. They've tried Hydro and Oxy codone. Nothing last. The hydro will take the edge off for a couple hours and the oxy does nothing.
Any advice or oppinions on UAB would be greatly apprecited.

Thanks
Josh

Hi Josh, Welcome to our family and sorry you had to come. There are many here that have had your type of cancer and are full of information. Keep coming back here it is really a life saver. I will keep you in my thoughts and prayers

Wendy

Hi Josh!

Welcome to OCF, glad you found us brotha, sorry you had to!

The UAB Birmingham Medical Center is a Comprehensive Cancer Center and is the #1 ranked hospital in Alabama according to the US News and World Report Annual rankings. It's rated high in cancer care and Ear Nose and Throat, while not nationally ranked it's a good facility that should be up on the current protocols of treatment. It should be a good choice for you to get your medical treatment done when and if the cancer is verified.

I too had young children at home (ages 4 and 7 at the time of diagnosis) and can relate to where you are my friend...just take it one step at a time and only deal with what's in front of you, it's when we let our minds wander that we can get overwhelmed and that does nobody any good...so breath. Right now let's try and get the pain under control, work closely with your medical professionals on this. Take this time to eat the foods you love, as much as you want, and spend precious time with your family before the madness starts with treatment..."if" it's cancer which only a biopsy and pathology report will be able to confirm.

Plug into these forums often, we are here for advice and support and we are badass at it so don't hesitate to reach out Josh.

Keep your chin up, breath.

Eric

I'm ready as can be. I have been visiting this forum for three weeks now and have found it the most useful resource on this cancer anywhere. I forbid my wife to do any research until after the baby was born last week, then I gave her a printout of Getting Through It Together and referred her to this site.

Thanks so much for the encouragment and thoughts. I read a quote on here recently and it has stuck with me and kept me upbeat as I would like to consider myself a "tuff ole country boy". The quote was to put your big boy britches on and get ready to fight like hell.
I'm glad I found this site now instead of later.

It sounds a lot like its HPV related - a lot of BOT cancer is if so its very treatable - hugs - you'll get through it!

Do you have any swollen lumps in your neck?

Yes, I have a large lump under my right jaw line.Not visible but you can feel it if you place a finger on my neck. The doctor is aware of it. Also just last week I noticed a lump on the left side under my ear. I haven't been tested for HPV but I'm sure thats what the doctor was speaking of when he said he was looking for certain tags out of the biopsy. Is there a quick explanation why the HPV+ is more receptive to treatment?

Josh, welcome to OCF! Congrats on the new baby!!!!

Only thru the biopsy will they doctors be certain if you have cancer. I hope it comes back negative!!!! For now, Im sure the baby keeps you plenty busy. Try to do positive things that will keep your mind off the "what if's". Reading or any activity that makes you concentrate will work.

There are so many unknowns yet about HPV. No matter if you are HPV+ or not, you will still be treated the same way. They can check your biopsy sample for being HPV+. I would ask if I were you just so you know. Also HPV+ patients have less of a chance for recurrence so thats another good thing about it.

Keep up that positive attitude, it really does help you to get thru the rough times easier.

Best wishes next week!!!!

Well IF your BOT primary biopsy confirms SCC then ask that those cancer cells be tested for HPV. IF you have SCC with a BOT primary then tests have indicated that you have a 70+% chance that the cancer is HPV+ and IF you have SCC and IF it's HPV+ then you have less chance that the cancer will come back post Tx and therefore you have a greater 5 year survival rate. First things first, lets see what the results of the biopsy are.

UAB is also a member of the National Comprehensive Cancer Network, an alliance of 21 top U.S. cancer centers that together develop the cancer treatment protocols that are updated annually. The husband of dcferree, a relatively new member of OCF, is being treated there -- perhaps you could get in touch with her with any questions.

All of the "ifs" are encouraging but I have appreciated the doctors being upfront on what their oppinions are about my situation. There is a possibility its something else but I'm preparing for the worst and hoping for the best.

Thanks for the link to the other member being treated at UAB. I will get in touch as soon as I have time.

I'm going to try and let it go until i get the results of my biopsy. I like the thought process of dealing with whats in front of you. I have to get through the biopsy and recieve the results. Then I will deal with whats next.

Thanks for all the comments.

Josh

Hang in there. You are doing everything right at this point.
After my biopsy confirmed the BOT tumor, I found that Percocet worked a lot better than plain oxy or hydro codone to dull the ear pain. One of the bright sides of radiation TX was it shrank the tumor quickly enough to relieve the pressure on the facial nerves that was causing my ear pain.
Personally, I found that reminding myself of my self image as "tougher than you want to find out" and an indefatigable opponent served me well, although the tumor tried to beat me in both of those categories (after all, it was a rogue part of me). And I was turning 60 so a young guy like you can and will do better.
Charm

Thats good to know that the ear pain will decrease with treatment. Right now it has the best of me. It is literally the kind of pain that would drive a man crazy. I don't see how they survived in the old days without pain medication.
My doctor at UAB seems like he is going to be conservative with pain management. My local ENT that referred me to UAB seems very open with pain management. I hate to get between the two. I want to do whats right but I don't want to walk around hurting all day. I'm kind of torn. I am trying to make it until Friday and bring it up again face to face with my doc at UAB. Its horrible though. I have to give myself a break about every three days to allow my stomach to catch up and have a movement. Thats when the pain gets out in front of me and it takes almost the entire next day to get caught back up. Its like there is a huge bug deep down in my ear. Constant ache with periods of piercing pain.

I will be consulting with him Friday if not earlier.

Thanks
Josh

Hi Josh,
I love your positive attitude. We handled it by taking each step one at a time too. It is doable. They seem pretty certain, so I would start eating whatever you want and as much of it as you want so you can gain some weight before tx. You will lose weight. Kevin lost 56 lbs, but he had it to lose so did ok. Now we struggle to keep his weight where it is though. Just another side effect of radiation/chemo I guess.
How old are you?
Please tell your wife that she can pm me if she would like to talk caregiver to caregiver. It will be very hard for her. Probably harder than it is on you because while you are going through it, she is trying to rock the house and babe and watch and help you too. It is gut wrenching to see your loved one hurt.
Please keep in touch with us. We'll be here for you.
Blessings,
Kathy

Josh,

It kind of sounds like something is affecting one of your cranial nerves (you have 12 paired cranial nerves) as the pain isn't being resolved with an opiate. Oxy is a relatively strong pain medication and should be able to deal with the pain you are experiencing. My thought is to ask your Dr for an anti-convulsant/seizure med as it may just be neuropathy (nerve pain) and opiates aren't generally effective for treating it. Many on these forums have used Neurontin (Gabepentin) with varying degrees of success treating neuropathy.

Marijuana (vaporized or ingested, never smoked) is another alternative that many here have used with success as well. The important part is to get the pain managed effectively as pain puts the body in distress, raising cortisol levels and is the enemy of healing.

Hope that helps

Eric

I am going to print my forum out before my next visit and have it in hand and ready to ask questions. I would not be against trying marijuana but i'm afraid it is not an option. I work for a gov't contractor and they test pretty regular and as far as I know Alabama is not on board with the medical marijuana movement. I should be ok until Friday and hope to go in armed with all the great info I am getting from comments and other forum info I have found at this site. Has anyone delt with using marijuana in a state that is not a medical marijuana state or a job that does not allow it??

I should tell a little about myself. I am 35. Smoker 15yrs+. Trying to quit. Horible timing. Heavy recreational drinker. Haven't had a drink in three weeks. That won't be a problem as much as smoking. I am positive for genital herpes and warts. That makes me think my biopsy will show HPV+. I currently work in inventory but I have worked in autobody and industrial painting since high school. I spent 6yrs+ painting military parts with CARC paint. A known carcigen. So I expected health problems later on in life. Just not this early.
I have regular check ups, dentist twice a year, no past health problems till this popped up. In the past year I finally started taking xanax for anxiety at work and trazadone for sleep. Until then I rarely ever took any meds.

Thanks for the replies. It feels good to be able to talk here. I am not a talker in person. It drives my wife crazy. I don't want to scare her or cause her to worry.

Josh

I'll bet that "conservative pain management" UAB doctor would be the first one demanding a fentanyl patch if he were the one experiencing the ear pain. Your description brought back bad memories. All of EricS suggestions are great.
There is no law prohibiting you from getting pain medication prescriptions from your ENT as well as the UAB doctor, although some pharmacies are so bullied by the DEA you might have to switch as I did.
Until the tumor shrank enough to quit pressing on my nerves, I just kept up the opiates and used glycerin suppositories for bowel movements. Laxatives were too unpredictable while the suppositories worked every time and within 20 minutes of insertion.
Oh, and Morphine has been sold by Merck since 1827. Laudanum (Tincture of Opium) has been around since the 1660s. Straight up Opium as pain medication was being used by the Babylonians as far back as 4000 BC. of course without radiation or chemo, base of tongue cancer patients died back then.
Charm

Josh,

I really don't give a "F" what's legal or what's not when I'm dealing with life and death situations my friend, I'm going to use or suggest what I know to work. You're going to light up a tox screen no matter what you do at the moment brotha and can explain most of that away. It would take a huge dick to tox screen you going through cancer treatment so I'm sure you could get a pass.

Many guys are the same way Josh, they don't talk about what they are feeling or experiencing mentally, physically, or emotionally. Use these forums as much as you can brotha, the more the better. I can honestly say I don't know where I'd be without them.

I wish Kevin would share more on here. He just keeps it inside and moves on. If he's feeling half of what I am, he should be talking to someone. Oh well. Boys!!!! ;o)

Kathy, it's good to know that men are just as frustrating to women as women are to men

Generally speaking it's difficult to get men to share on these forums...and those of us that do some people would rather us not some days, especially when we are having our own hormonal imbalances

I do wish more guys would share on these forums myself as the majority of those being diagnosed with Oral Cancer are men (Men are diagnosed with HPV related Oral Cancer at a ratio of 3/1 over women) however "sharing" must not be in our nature.

I'm just a normaly "quite" person to begin with. My wife could talk the ears off an elephant. My reluctance to comunicate with her is the result of experience. She tends to over analyse the smallest of details. On here I can turn the computer off if I don't like the way the conversations going. At home I'm stuck with it.....lol.

I feel ya Eric on the legality of comfort in a bad situation such as cancer treatment. For now though I can't risk my income. My wife got terminated a week before the baby was born from a company she had been with for 12 years. She can't draw unemployment until the doc's release her and from what I am hearing on here, I should prepare for at least 6wks of leave from my work. I have short term disability but its only 60% of my regular pay. We are soon to be facing serious financial difficuties. The least of my concerns right now but a real concern non the less.

Not to be a downer, but Kevin was off work 6 months and that was pretty fast from what our Drs told us. I guess it depends on what you do though. He works on the Artic Slope in Alaska 3 weeks at a time, so he had to have some stamina before he could go back. I know there are others that have worked through some of tx and gone back shortly after because they had a position that allowed for that.
Don't forget to have the social worker at your cc help you apply for ss disability. It won't start for 6 months, but if you're approved you have that to fall back on. We were approved 1 month from applying. I really think it is because it went to them from the Cancer Center. We did it online but she put her name in as the person doing it for Kevin and then she mailed all the records for us too. I know others who have to fight like crazy or just don't get it. Just something to think about. It's worth asking about.
Kathy

Hi there.. I second that - I was off for 6 mos as well, though I felt ready to go back about 2-3 mos out but I had it easy treatment wise. I had pretty much the same treatment as everyone else, surgery (I'm non HPV), chemo (3 large doses) and rads 33 - but I just seemed to tolerate it better than some - I think there a whole lot of factors as to why - physiology, diet, overall health etc... So it would plan for a potential 6 mos,

To answer one of your first questions, HPV + cancer seems to respond better I believe because it's the result of a virus... Someone will correct me if I am wrong.

Also quitting smoking and drinking is your best chance - there was a study on the survival rate of people who continued to smoke during and after treatment - and it was poor- walking during treatment - and quitting smoking will help - there a long explanation as to why but I'll skip it. cigarettes are a poison bottom line and alcohol is an irritant.

I still have trouble with fruit juice (burns like crazy!) I can't imagine trying a beer, wine or liquor. I sincerely hope you don't have anything serious... Take care.

I am having the biopsy Friday. Any idea how long it would be before I get the results? Its going to be horrible waiting all weekend but I don't see them getting them to me Friday.
Monday? Tuesday?

I have seen on here to expect 1 month recovery for every week of treatment.
I have short and long term disability where I work. Would this prevent me from SSI.

I was hoping to never have to use them. I know the short term is 12 weeks but I have not discussed long term with my emplyer yet.

With my wife unemployeed I need to work as much as possible.
I have a job where I could be put on light duty for as long as needed and I'm fortunate to have a friend close by I could ride with if driving was a problem.

Getting pretty scared. The pain is still stealing my focus right now.

Good luck with your biopsy on Friday! I know the waiting is such a hard part, even a few days feels like forever. In my experiences with my mom's biopsies, they told her she would hear from them within 3-5 business days. Unfortunately anything from Wednesday onward doesn't usually come back until the following week. Some take longer than others, but most of my mom's were back on the shorter end so hopefully you won't have to wait too long. Try to keep yourself occupied with things that make you feel good, I know it is going to be difficult but you don't have much of a choice but to wait so may as well do something good for yourself. If the weather is good, maybe take a walk in a park or nature center, have a picnic with your friends or family... I find reading is also a good way to keep my mind occupied.

I can't give any advice on the disability insurance unfortunately, but I'm sure there are a lot of people here that can.

Hang in there, and let us know how everything goes! Come back as often as you can/need. We will all be thinking of you and your family as you make your way through this journey. Hoping everything comes back ok!

Results will take a week to come back. Try to stay busy to keep your mind off worrying.

You will learn that with cancer, every person is different. Everyone responds in their own way to treatments, medications, etc. Some of us have worked right thru radiation while others have been home from work before we even started. Some people have surgery and will miss 2 weeks of work while others need 3 months or even more for extensive surgeries. You may be fine with having 12 weeks off from work. Try not to get ahead of yourself with this, take it one step at a time and when you get your results back and have a treatment plan in place then its time to plan for taking time off from work. You are young and should have an easier time of it than someone say in their 60s.

Right now, make the most of every single day. Eat like crazy, go out and have fun with your family. You do not even know if you have anything serious yet so dont let cancer win by keeping you down. Take some pain meds and think positive. If anyone asks what they can do to help you write their name and number down in a book and tell them you will let them know when the time comes. If that time does come and you need a hand dont be afraid to call every single person who offered to help.

Hoping its not cancer! Good luck!!!

First off it's not cancer until a path report says so, so try and keep that in perspective. I was told my biopsy would be rushed and it still took me almost 2 weeks to get a call back. Let's hope yours will be less.

BTW what is being sampled?

At this point all I know is lesions at the base of my tongue.


Hoping for the best, preparing for the worst.

I guess posting on here makes me feel at least like i'm trying to be proactive.
I've kept my spirits up until today. The ear pain is turning into an all day everyday headache.
Hard to be cheery with that much pain going on.

I'm ready for whatever if it is going to relieve the pain.

That's why we're here. We all need that boost now and then. We really do get it!!
Let us know how it goes!!
Kathy

After my FNA came back positive for SCC Moffitt still wanted to find my Primary so they put me under and told me they were going to bio my BOT and probably take my tonsils but they said they were determined to find my Primary. Here's the point of this post...they told me that they would look at my bio while I was still under to determine if it was cancer. I don't know how they could do that but that's what they told me going into the surgery room. As it turned out they found my Primary at my BOT and stopped before taking my tonsils. Ask if they can get premliminary results while you are under?

Hope everything went ok with your biopsy, today was it? Praying that everyone turns out ok!

Biopsy is over with. All about the waiting now. UAB team top notch. i was the first surgery of the day. had to be there at 5am. lots of residents, great anestesialogist (sp. The doc even called to check on me friday night. He has made a point to let me know he will personally call me as soon as he gets the results. Next scheduled appt the 20th. Should have results and a game plan in place by then. Changed meds to oxymorphone. same results. just not strong enough. i am making myself go 3 hrs in between pills. Pain has progesively gotten worse every week since mid july. up until then it was an anoyying ear ache. ever since then it has turned into a pain i can't really describe.

Jamos,
I had a similar pain. My GP put me on Gabaplatin Sp. AKA Nurotin Sp., along with the Oxy. It was a godsend for me. It is not a narcotic and few side affects (I got a bit of blurry vision). It some how soothes the nerves.

Praying for good results on your Biopsy,

Its interesting how differant things affect differant people in differant ways. I was given Gabapentin and became a mental mess and had to go to the hospital. I halucinated and saw all kinds of things that were not real. Maybe I took to much but it now on my danger list.

Well I got the phone call. It is cancer. I was at work and upset so I didn't go into details as far as stage and type.
They did say that right now they want to do treatments instead of surgery. I have appt's next Wed with a Dr Ruby Meredith at UAB and a DR. Lisa Nabell.

Anybody got any advice or comments on these docs I would appreciate it.

Is treatments instead of surgery a good sign?

Im very sorry that you will be another oral cancer survivor. Most doctors will wait until they are face to face with a patient before they give that kind of news. While you are at work wasnt the most appropriate way to be told you have cancer.

The OCF does not recommend one doctor over another or give specific recommendations other than to get the best possible care you can and a cancer center is usually the best place for treatments. Some members who have been seen by the doctors you mentioned may be able to give you their own personal opinion (preferably thru a PM).

I would suggest getting a second opinion at a cancer center before beginning any treatments.


PS... Please add a signature when you are able to. Click on the "My Stuff" tab, then on the drop down menu click on "Edit Profile". Scroll to the bottom and write your info in the white box and "Submit". It will make helping you much easier by seeing your history at the bottom of your posts.

JAMOS

Yeah it really sucks when the doctor calls you on the phone at work and tells you it's cancer. I was at a meeting and when the doctor could not reach me only my office voicemail, he called home and asked my wife for an emergency number. She gave him my Blackberry number which I always answered. I suppose I should be grateful he didn't leave a message with my wife.
Next thing you know, they will tweet us.
Oh and TX with radiation and chemo instead of surgery is used for many oral cancers.
Charm

JAM,

Sorry for the news my friend and Dr's are about as considerate of feelings as a Marine Drill Sgt. The best thing you can do for yourself is to remain calm, managing fear, worry, and stress is very important during treatment. I can go into the physiological reasons for this but I'll spare everyone the details and just say that it's extremely important.

The only things we can control after our choice of medical teams is our attitude and our nutrition, and in my opinion these are almost as important. Remember to breath, spend time with loved ones, enjoy the foods you love from now until treatment starts, and just remember to take things one step at a time. We are here for support, advice, and to vent...so plug in as much as you can.

Keep your chin up

Eric

How funny. I just caught myself walking down a hall at work with my shoulders slumped forward, chin on my chest and a million things running around my head. I remembered my 96 year old grandmothers advice after my divorce years ago.

KEEP YOUR CHIN UP!!!! lol

I'm going to have my melt down tonight in the privacy of a hot bath. I'm going to gather myself and face the world again tomorrow just as I always do.

I'm pretty much at peace with life. My concerns are the stress on my family. If I brought this on myself through years of hard living. I hate that my family has to bear the end results.

That guilt is tough.

Thanks for everyones advice and support.
I will keep posting as I know more.

Hi JAMOS:

I just sent you an email with some doctor information. You have the support of the entire OCF behind you, and that is priceless.

julieann

Without knowing the details and just reacting to your previous posts, it really sounds like your cancer will test positive for HPV and that will be a good thing, relatively speaking. See my Signature Line below which may be identical to what you have so as you said you need to "put your big boy britches on and fight like hell" and remember we will be with you 24/7.

JAM,

Wisdom comes with age...in my case it's a freak of nature and only applies to the advice I give others

Guilt comes with the territory, I understand it well even though I'm not Catholic. I'm partial to hot showers myself, they always get me ready to face whatever life seems to throw my way.

We are here for you, strength in numbers.

Eric

JAMOS -
If you haven't already done so, you have to stop the tobacco use BEFORE radiation therapy: I can point you at the studies that show that smoking reduces the effectiveness of the therapy. I know the timing is horrible, and that tobacco is terribly addictive, but this is one thing you DO have control over that can make a difference in your outcome.
If you have to carry cigarettes, tape them in a plastic bag, and tape pictures of your familie over that: maybe that will give you strenght. Also, discuss smoking cessation with your doctors - there are patches for that, too. Please, please, please try to do this.
On a more positive note, my husband's ear ache subsided a couple of weeks into therapy, so I am hoping you will get some relief soon.
Maria

Really bad past couple days. Finally broke down and called again about the pain meds. They are supposed to be trying to get me into a pain clinic locally. My treatment team is an hour and a half away, so dropping in to pick up a perscription is not an option. I hope they call back soon. I don't want to face another night of pain like last night. I'm seriously thinking of setting my clock to wake up and take meds in the middle of the night. The waking up after everything has wore off is unbearable. I understand that face on the pain chart beside a 10.

I fully intend to

I hope they get the pain under control soon - best wishes from Ohio. Let us know how you are doing.
Maria

Thoughts and prayers are with you. Where you are is the terrifying part. As soon as you start tx you get your warrior face on and just push through it. You have an amazing attitude and now, an amazing support group.
As far as guilt from the past. You have to let it go too because it doesn't change anything. Many of us understand that all too well also.
Blessings,
Kathy

[quote=JAMOS]I'm seriously thinking of setting my clock to wake up and take meds in the middle of the night. The waking up after everything has wore off is unbearable.[/quote]I was like that too. Along with other pain meds (Gab etc), I ended up taking TIME-RELEASED 12 hour Hydromorh at night so I could sleep.
Hard to believe they didn't suggest that in the beginning. I had to ask...but it made a big difference.

They got me on a patch. It worked great after i had it on for about 24hrs. woke up this morn with pain and took a loratab. need to go to work but i think i'm going to stay home and enjoy company and my daughter.
the diagnosis is sinking in. the reality of what i'm fixing to have to go through is getting real.
i've had so much support from family and friends and offers of help have come pouring in. i am a blessed man and i intend to fight this in that manner.

thanks for all the support from the OCF.
YOU people are the one who TRULY understand and give me HOPE.

putting my big boy britches on and preparing to face this day.

Jamos

Don't know what dosage your patch is. I'm assuming it's Fentanyl. I found that they only worked for me for 48 hours, not the 72. My doctors felt it was better to just change the patch every other day rather than increase the dosage.
Don't be bashful about demanding "big boy pain dosage".
Gritting your teeth and bearing up under pain seriously impacts (in a negative manner) your ability to win this fight unlike fights against a human opponent. Don't worry about the DEA propaganda on addiction, they just don't get that it's not enjoyable just ameliorative.
Focus on how your family needs you and you will get through this
Charm

We are right behind you! I knew you would get your battle face on! Great job!! It will be a battle and you will feel like crap, then before you know it, you're done!! Honestly. Just focus on the days one at a time and know this is your job now.
Apply for ss disability as soon as you can. You may never need it, but if you are approved and by some chance are home more than 6 months, you will have it to fall back on. Your social worker at your cc might be able to help with the logistics of it all.I think you said you had some disability? With family and friends helping you guys will make it through financially too. God will rain blessings down...seems he already is!
Blessings to you and your family,
Kathy

Just an update. I am scheduled for my feeding tube wed. Will have to stay in the hospital that night and have my first rad treatment the following day at noon. Chemo the 10th or 11th.

Finally getting this show on the road. I've been off since last Wed. Enjoying the baby and taking my oldest to and from school. Funny how this can make you wake up and appreciate life so much.

Maintaining my weight as of now. Pain is still horrible but I've just gotten used to it. May try and up my patch next time I see the doc.

getting nervous the closer it gets. i know the side effects may not come for a few weeks. it's knowing once i start there is no looking back.

Do the best you can to eat all your favorites now. Your sense of taste will change and swallowing will get difficult. This is temporary but will be an annoyance that seems to hang around for longer than it should.

Line up anyone who offers to help you. Write down their name and number and let them know you will call them when the time comes. It could be for anything, to babysit the little one or a play date for the older child. Anything that will give your family a break to have a bit of normalcy or quiet.

Call the American Cancer Society. They will help with transportation to your treatments. I am a volunteer driver for my area and take patients for appointments. They will also provide you with either a $300 voucher for the pharmacy or up to $300 to help cover the costs of transportation to treatments. The pharmacy voucher will cover your co-pays on prescriptions. Some pills can cost over $100 per pill before insurance. Either way you decide to use the $300, it will help.

Be prepared to take in every single day a minimum of 2500 calories and 48 oz of water. This is not optional and must be done every single day. If not you will quickly become dehydrated and malnourished and wind up hospitalized. Im not trying to scare you but I want you to be aware going into this of what is mandatory. Ive spent too many nights crying in the hospital for malnutrition and dehydration, I felt horrible and I dont want to see that happen to you. Dont skimp one day thinking you can make it up the next one cuz that never happens, playing catch up doesnt work. Also you need to swallow every single day, even just sips of water is ok to keep the swallowing muscles active so they dont forget.

Make sure you have dental trays made for flouride and a full blood count including thyroid and testosterone levels. Better to go into this prepared so you can sail right thru and move on to your recovery. The better your nutrition, the easier this will be for you. If you need help with the feeding tube, I am full of little tricks that will make it easier. Make sure you ask for a pump so you can do feedings while you sleep. By doing some of the feeding at night it will make it so you dont have to push so much during the day.

Best wishes with everything!!!!

WOW, Josh. Christine really hit on just about anything that you can expect. I'm so glad you found this Forum. Right now is the time to eat every and anything you desire and not worry about calories. I wasn't lucky enough to have found the Forum when I was at your stage in the game , and had no one to tell me about the importance of nutrition and hydration, so I lost a bunch of weight and wasn't big to begin with. Again, you're ready to go, and come back often to let us know how things are going and seek help, if necessary.
Your Alabama Buddy, Julieann