Greetings dear friends. Bill is back, but returns with a problem and looking for assistance once again. The answer to my problem will likely be right here in this text, and I know it. However, I just cannot do anything about solving it with my current mindset.

I am eleven months out from treatment now, fourteen from being diagnosed. My stress level is climbing daily. Due to unforseen circumstances I am unfortunately without any health coverage at present, and have not had any for the past two and a half months. Because of that I have not seen a doctor in that time period either. That will change in a couple of weeks when my new coverage kicks in.

I have moved my wife to Massachusetts, along with all the family pets and most of our "stuff". I remain here in S Florida, trying desparately to sell our home so that I can join her up north. The house is currently listed at some $ 20K less than market, yet still I get not even an offer.

The above, though problems, are not my primary concern right now though. My primary concern right now is weight loss, in the form of muscle loss. I have gone from a bit overweight 215 down to 150, ten pounds of which I have lost in the past couple weeks. My massage therapist, yes I am still being given free massages once a week, has informed me that the time is now to do something about this. She has noticed the muscle loss that has happened over the past several weeks. I now have those ugly flapping in the breeze deposits of fat that used to be at least partially hidden by muscle that was beneath them just about everywhere.

In a single word to what is likely the first question to be brought forward, no. I am not eating the way that I should be. A little over a year ago I had a voracious appetite. Today I have no desire to eat at all. My ability to taste has not returned in any degree. Because the list of things that I can taste is so limited I have even gotten tired of eating what I can taste. Eating foods that I cannot taste lost its place on my things to do long ago. Yes my caloric intake is not where it should be, to even maintain, let alone gain. I am being semi-active during the day, even doing some walking to get some additional exercise. Unfortunately we all know that the exercise burns calories, calories that I cannot afford to burn.

Over the past week I have tried a few protein mixes to increase my protein intake, knowing that it supposedly is what is required for muscle growth. I cannot stand the taste, yes I can taste them in whatever I mix them in, much less the horrible smell, regardless of the flavor. I also developed a diarrhea problem and thus stopped.

I am at my wits end here. I just do not know how to force myself to eat. Being alone, there is noone here to nag me or give me a kick in the a../butt, though it too is nearly non-existant now too, save the wrinkled deposits of fat, and would be hard to find. I gave some thought to attempting to contact the nutritionist that was assigned to me during my treatment, but having no medical coverage that apparently is also not possible.

Any suggestions to motivate me to eat, or how I can somehow get my protein intake up would be gratefully appreciated.

Withering away in S Florida,
Bill

Bill,
All I can say is "I understand". I'm only 3 1/2 months out from radiation now, and only started eating (some) solid food in the last couple of weeks. I've been living on liquids for the last 5 months. I did not have a PEG, but managed to keep weight loss down to 30lbs-from 185 to 155 and maintaining. The liquids that have been sustaining my weight have been Ensure, Prosure, and Naturade's Weight Gain mixed in milk.

I developed some kind of 'food phobia', and was not able/willing to eat. Then, about 2 weeks ago, I forced myself to eat some french toast dripping in butter and syrup. I felt so good afterward, that I continued eating something every day, mostly a few bites of chicken or steak washed down with water. Eating anything is a huge chore for me, but I'm able to do it daily. Everything tastes absolutely horrible, but all I can say is, I feel so much better after food than without it. I gaining some energy, too, and feeling more 'normal' every day.

I encourage you to bite the bullet, continue drinking the liquid nutrition, and keep trying different foods until you find one you can tolerate. (By 'tolerate', I mean get down and keep down no matter how bad it tastes or how angry you get). Keep trying, don't give up, it's worth it!

Riley

O.K. Bill- you need some nagging and this Island gal can do it! What is your base caloric intake per day? When do you get it? Are you getting nutrition by mouth only now? Those are the nutrition questions we need answers to.
Question #2 and OBSERVATION #2. You have sent your whole support system away and you are alone there- Seems to me like a BIG depression problem. Turn that house over to a real estate agent and get the hell out of Dodge. Money does not always equate happiness. I know that, at heart, you are a giver- I have gotten lots of good vibes from you over the past year. Give yourself permission to beat this food battle. Since food may no longer be a pleasure part of your life- find something to take its place. That is what survivors do. And get out of Florida and to the people you love. Amy

Hi Bill, one thing for sure is that you can't be eating normally now due to side effects of treatments and another thing for sure is that if you don't force yourself to take whatever you can, your weight will continue to drop and your body will weaken gradually. It is not a matter of whether you have the desire to eat or not. What you need is very strong will power and determination to eat even though it tastes horrible. I didn't have a PEG either and managed to overcome the oral pain and taste problem and lost 16 pounds (I was rather thin to begin with). You can try something soft and easier to swallow. As a Chinese, my diet is very different from the westerners. I took a lot of congee, cereal in milk, fish, taufou and melon. I mostly took nutritious food that was easy to swallow. You may consider inserting a feeding tube, like the majority of the people here did. This should help you get the nutrition you need without suffering from much pain. I understand that you have more hurdles other than the eating problem but among them, getting nutrition should be the first and foremost one you should address now.
Where there is a will, there is a way!

Karen

Bill,
one thing I would add is that muscle tissue doesn't build up as a result of just eating. It can certainly be "consumed" by the body from malnutrition and atrophy. You have to have an exercise prgram in place as well, even if it's just walking around the block. I went from 170 to 109 - My new normal weight now is around 150 which is perfect for my height. I also pumped iron for the upper body.

How tall are you?

I heartily agree with Amy (and Riley and Karen too for that matter)- you still need your support system.

I also empathize with you over the muscle and protein drinks like Boost and Ensure - it made me gag as well. I lived on Carnation Instant Breakfast and it kept me alive anyway. I also had Hagan Daz milkshakes daily, although I am not so sure how healthy 85% butter fat is. I am really doing healthy foods now - tons of fresh fruit, salads, very little red meat, etc.

Bill,

Another point about the importance of the support system -- for the months after my treatment ended, when I had lots of trouble eating and nothing tasted good, one way that I was able to get through mealtime was to try in some way to make it a social event (dinner with my husband in the evening, lunch with some of my colleagues at work during the day). Even with liquids or soft foods, it took me much longer to down a "normal" meal than it did them, but having company and conversation helped to pass the time and take my mind off the unpleasant taste and occasional swallowing difficulties.

As Amy said, think about rejoining the rest of your family sooner rather than later, or try to connect with some local friends or neighbors who may be able to help push you through the tough spots.

Cathy

It's a new day and quite frankly after reading my post from yesterday I am ashamed of myself. I am not only ashamed for having started what today appears to have been my own little pity party, but also for losing my inpenetrable positive outlook on life.

So why are things so different today? Well, after making that post yesterday I started popping around to some of the other parts of the site. I then did a search to find out how things were going with someone that I had chatted with an several occasions and someone that noone could ever convince me had ever had a negative thought, Dannyboy.

Not having been here for a while I was not aware that Danny had left us. When I read about it I could not control my emotions and cried for near an hour. That was the start of the turnaround. Danny was, and always will be, one of the strongest people I have ever known. I will likely never have the amount of courage he had, but I can at least try.

Not long after leaving the site, out of the blue, a friend called and asked if he could take me out for dinner. Reluctantly I agreed to go, but told him I probably wouldn't eat much but would enjoy the company. After I consumed a large salad, two scoops of mashed potato with chives, some steamed broccoli and a marinated, grilled chicken breast I told him that was more food than I had eaten in the past week. He then informed me that he had accomplished his goal, get some food in me. His business is right next door to where I get my massages and I stop in to see him every week. He had been noticing my weight loss also, and was concerned. We had a great time over dinner and then afterwards here at the house just talking.

So at that point I had knowledge of a friend who fought with his positive attitude to the very end. As well, I had a friend that had watched me from day one go through my journey and had displayed his concern for my well being, not to mention a very healthy meal in my stomach. As I lay in bed the thought occurred to me that just maybe things are not as bleak as they appear.

This morning the sun did in fact rise. As I went outside to get my newspaper I saw the dew covered, green side of the grass, not the roots. I downed my usual orange juice and vitamin as the coffee machine gurgled and dripped the hot java into the pot. I poured a bowl of cereal, added some milk and sat down at the table to eat it. After a couple bites I got up and grabbed a notepad and made a worksheet just like I had used while in treatment, listing what I had consumed, how many calories it had and how much protein it contained. I rinsed out the bowl and as I was pouring a cup of coffee the door bell rang.

It was my sister, who lives about sixty miles south of me. Because I had not returned any of her calls, emails or her letter she had decided that rather than have the local police do a "health and welfare" check on me she would do it herself. I have always been rather quick with words and before she could say anything I told her that the rumors of my death were all false. She began laughing hysterically and then threw her arms around me. Our laughter turned to tears as she repeated said how glad she was to find that I was okay. We drank coffee and talked, and talked, and talked, and talked... I think you get the picture. I'll be going down to her house this afternoon to spend the night and all day tomorrow. We will be going for a long horse ride early tomorrow morning on the beach, with luck, early enough to watch the sun rise.

With the turn around in the past twelve hours bleak and not so bleak anymore. Though I learned that Danny had left us, his positive attitude still has an influence on me. I had a fantastic meal last night with a friend who cares about me. My little and most favorite, sister appeared out of nowhere to check on me and show her concern. Thinking back just a bit, my massage therapist also had made her concern known by telling me that I had to do something about my muscle loss.

True, my wife, the family pets and most of our belongings are not here and as some of you have mentioned I no longer have my support group with me. However true that may be, I think that the support group I had has just been revamped. It now consists of friends and family that are here. That is not to say that I no longer consider my wife part of my support group, I still do. She knows nothing of what has been happening with me here. I have an uncanny ability to turn the "poor mes" off when I talk to her on the phone, which we do, morning, noon and at night. Besides, she is where she needs to be now, with her mother, taking care of her and has enough to deal with without needing to worry about me.

Few of you will likely get this far with reading but I must clarify a couple things. I do not have a problem eating. I have been on solid food for quite a while. The peg tube is long gone. I do have the occasional problem with aspiration but can deal with that. It is just a case of forcing myself to eat, and eat properly that I have to change. I still have four cases of Ensure that I never used. That I can taste and will begin using it as a supplement, but supplement only. There is little that I cannot cook as I was brought up in, and owned my own restaurant. The key will be to just do it and say the hell with the fact that I cannot taste anything. If I want to make something of the thus far victory over this insidious disease, I have to eat.

Also, those of you who have read my journal know that my GP was always my "go to" guy. I doubt I will ever find a doctor like him again. I plan to make an attempt to get past "those people" out front and talk to him on Monday, I may even call him this weekend and leave a message with his answering service. I am reasonably confident, no, I am positive, that explaining my problem of being out of my meds will result in getting enough samples from him to carry me until my insurance kicks in.

Thank you all for caring. I hope you all have a fantastic day. I am off to go listen to the terror-filled screams that will eminate from the bushes and hedges as their little heads are severed by the electric clippers. I have no idea who the guy is that hijacked my account and made the post that started this thread, but I am glad he has been sent packing.

Loving you all!!
Bill, the REAL one!

Bill - I read every word, I laughed, I cried...all at the same time. Thanks for sharing the delightful UPside of Bill, but pity parties are always welcome too From the OTHER side of your state, JaneP

Hi Bill,
Sorry for not following your story well and having made some 'advice' at the wrong moment. Anyway, I am glad that you have become much more positive and the real Bill is finally back. Cheers!

Karen

YEAH BILL, [I know I am shouting but I am so glad to see such an upbeat post] Amjy

Yay, Bill! Glad to know you DO have a support group there. I am still having severe swallowing problems and I wish I could eat what you describe yourself eating. Even after the esophagus surgery I went through, I seem to be stuck with small mouthfuls of liquid only. Everything else I choke on eventually. I really hope I can learn to compensate somehow with more practice and get a few other things down and get off the PEG (after more than a year of nothing but soups to eat I am SO sick of soup!), so I have sympathy for struggling with eating but to me it seems like you have the ability to do what i wish I could do....Hang in there, hopefull you'll get more tatse back as time goes on.

Nelie

Dear Bill.. I am so sorry you have had a rough time of it... but, what pleasure to see the "old " Bill re-emerge. I wondered where you had gone ...we really missed your lovely meals, and advice , on the Island!
Cheers
Marica

Dear Bill,
Wow, What a turn around. Remember that lobster dinner you cooked for all the girls on the island. Well lobster was one of the first things I could really taste and enjoy(along with rare lamb chops) and corn on the cob. Invite some friends over and give it a try.

Good to see you back and sorry your taste buds are still on mutiny. Ice cold, vanilla, coffee and butter pecan Ensure Plus are tolerable and 350 calories. Dark Chocolate Boost was OK. I used these to supplement what I could eat and mainatin weight. Keep experimenting with tastes. You like to cook and eat too much to give up on this.

Take care,
Eileen

Hi Bill
I was just reading your post and wanted to add my 2 cents. I personally have not gone through the wretched cancer battle that you and many here have. My Mom's tongue cancer is what brought me here.

But I am a personal fitness trainer and nutrition consultant and have some knowledge in muscle mass and the very important impact it has on one's health. You are right in your concern with the loss of your muscle mass as well as your concern with adequate protein intake. Muscle loss is a natural aging process that occurs in healthy adults begining at the age of 25. In your case with your illness it is even more extreme. Walking will not help you with maintaining or increasing your muscle mass. You really need to begin a safe resistance training program. Weight training is the the only thing a person can do to maintain and or increase their muscle mass. It is especially important at we age. It can take as little as 20 minutes a day 2-3 days a week to receive some great benefits. In addittion the protein is also essential to help your body build vital muscle mass. There are so many variations of protein shakes-ready to drink and powders. Just keep experiementing until you find what you prefer. Don't hesistate to add your favorite items to the powder and blend it up. Berries, bannanas, yogurt, coffee, cream, vanilla, etc...the sky is the limit to get the flavor to where you want it. The general rule of thumb is 1/2 gram of protein per pound of weight. In your case you might want to increase it up to almost a full gram per pound of your weight.

By increasing your muscle mass you will really feel alot better. Your energy will increase, your mood may improve, you will have better joint health and decrease your risk for injury.

Good Luck in reclamiming your health!
Tami

I had a really ahrd time tolerating all of the common protein supplents like Ensure and Boost, etc...for some reason I found the Whey based ones to taste terribe and they make me feel gross. I like Soy based supplements much better. Especially Spiru-tein by nature's plus. It also has the added benefits of 100% vitamins, minerals, enzymes, fibers and diet-aids such as lecithin, choline, inositol and spirulina. Bee pollen is also added for increased energy and endurance. and it comes in 10 Great flavors...I like the vanilla the best. I lived off the stuff for the few months at the end of treatment where I had a liquid diet.

Give it a try....

dw

When I read your first post, my heart was hurting and I was a bit afraid for you... When I got to your second post I saw you rally!! Your description of the grass and your "poor hedge heads, made me smile. You are very inspiring and I thank you for your positive outlook. Dannyboy would be proud of you!
Jennie

Bill,

I appreciate your posts and can definitely relate. I know what it is like not to be able to taste food. My taste is wierd, that it comes and goes. Have you tried accupuncture? That and aurricular therapy has really helped me. Keep being postive!

Joyce

(Paul Harvey voice on)
And nowwwwwwwwwwww, for the reeesttttt of the story!
(Paul Harvey voice off)

What's six weeks among friends?

When we left our story Bill had seemingly made an about face, without causing any serious injury to himself. The Navy bootcamp training apprently still resides somewhere in the depths of the gray matter that resides beneath his hair. You may recall, and if you do not you can read the post further on up, that I was off to my little sister's home that afternoon, with an ocean side horseback ride scheduled for the following morning.

I arrived around 4 PM to find little sis slapping fresh ground beef into patties to be sacraficed later over some Kingsford charcoal. Asking if I could help was a mistake in that she immediately put me in charge of making a huge bowl of salad, lettuce, tomatoes, green and red peppers, red onion, sliced cucumber and chopped celery. She also wanted sliced mushrooms in it but they were reserved on the side for anyone wishing to consume them. I do not eat toadstools. Frogs pee on them and then you get warts in your stomach!

Sis had already made potato salad, which was chilling in the refrigerator. Pickles, pickled onions and beets, as well as the customary chips and dogs completed our feast. I was pleased to see the dogs because that is one of the things I can taste.

However, I decided to live dangerously and tossed a large beef patty on the grill for myself. Cooked beef tends to be dry, and dry is not good for swallowing, but I have always consumed cheeseburgers from the grill at about medium-rare, still holding some of the natural juices. With a dash or two of salt, a splash or both mustard and ketchup I bit into it. No, other than the taste of the charred exterior from the charcoal I could not taste much. But I ate the whole damn thing, and only need an occasional sip of "liquid" refreshment to get it down.

It was, an absolutely fantastic dinner and I ate a bit of everthing there, well except for the toadstools, and I doubt it necessary to revisit the reason for that. Later on we built a fire out in the yard and sat around yacking and just plain enjoying the company of one another.

I was up at 4:30 the next morning and got the coffee going. While I was showering sis got up and prepared breakfast, just for the two of us, homefries, sausage patties, scrambled eggs and toast. We ate like two starving animals. Sis hit the shower and I cleaned up the table and kitchen.

We were out the door at about 5:45 and after a short drive arrived at the stables. Ten minutes later the horses were trailered and we were headed to the ocean, arriving at about 6:30 with but a faint hint of light appearing on the horizon.

We had been riding for near 20 minutes before the sun broke the plane of the horizon, on what was a completely cloudless morning. We needled each other about being challenged and not remembering to bring along a camera. Damn I love that girl. If she were not my sister, and already married, I would marry her in a heartbeat.

We returned to the trailer just before 11:00, loaded the horses and headed back to the stables. Both horses were given baths and brushed down before we headed back to the house for some much needed lunch. Lunch you say? HAHAHA!!!

My brother in law is Italian. The familiar essence of garlic permeated the air as we walked to the front door. We nibbled on antipasto for a bit which was followed by chicken cacciatore and shells with meat sauce. Oh, and garlic bread.

The three meals were very likely more food and calories than I had consumed in past several weeks combined. Who cares that I could not taste much of it? It did not matter. My stomach was not emitting strange noises, similar to those found in some science fiction movies.

There is one small piece of not so good news, and that is that I am still stuck in S Florida. However, I am taking a reprieve. I am flying up to MA on the 15th of next month for a couple of weeks, returning on Dec 2nd. I AM going to celebrate the coming holidays with my family.

I did manage to solve the problem with my medications I currently have anywhere from a six to nine month supply of each. It would not surprise me to learn some day that doc had to call several company reps the following day to get his sample supplies restocked.

I have kept myself busy around the house, cleaning, dusting, vacuuming, washing and waxing and doing laundry. I have also delighted in the melodic sounds that eminate from the grass and hedges several times more, as their heads are ripped off by the now rather dull blades of the mower and clippers.

My wife has scheduled a couple of appointments for me while I am up there. I need no reminders from the peanut gallery. I know it has been far too long since my last visit to see a doctor and dentist. Yes, she is back to work and loves her new job. The absolute best part of it though is that our new health coverage is through Pilgrim Health and Dana Farber is a part of the network!!!!

I am tired so I am going to put some Greenmusic on loop on the computer and head on off to my four-poster. I have REALLY gotten into ambient new age music. If any of you wish some suggestions for some awesome relaxing sounds let me know.

'Till next our paths do cross yet again, peace and health to all of you, accompanied by my most grateful and sincere thanks for being here for me. No, I am not about to disappear into the mists of the moors. You'll see my smiling face again, soon.

(Paul Harvey voice on)
And now you know the REST of the story.
(Paul Harvey voice off)

PS: I wonder if I will ever be able to make a short post.....

Bill, I read your post, Loved it, and will send you some thoughts about it when I have caught up on sleep. Amy

Bill,

Several things.

1. Most of all, that's great news. You're eating (I'm getting hungry) and about the insurance.

2. Don't shorten your posts.

3. Love the sense of humor.

4. Try writing a book. You'd be great at it.

5. Hope you sell the house soon.

Jerry

Hi Bill, I to enjoy your post. Keep up the good
work. As to food I'm on Baby food be glad you
don't have to eat that. Next time take your camera
when you go out on the horses.
Take care, Cathy