Hi,

I am new the discussion and new to being a wife of a cancer victim. My husband had a biopsy on 9/11/06 - not the day for a biopsy - we got the cancer diagnosis on 9/12, he had a Pet and CT scan on 9/18/06 (my birthday) and we learned he has stage 1 squamous cell cancer of the tongue with a couple tiny (less than 2 cm) spots on a couple lymph nodes, we went to a local oncologist the following week, to MD Anderson for a second opinion on 9/28. He was scheduled to start radiation with the local oncologist and at the local cancer center on 10/23/06 - that delay was very frustrating and scary. The cancer center then called on the morning of 10/23/06 to cancel the start of his radiation and could not tell us when they could reschedule - they supposedly were having

Barbara,

Please detail his Tx protocol. It's helpful when answering. Where is he being treated?

Forget the taste. We all loose it around the 2nd to 3rd week of rad. Mine still hasn't come back to normal and I am told it may be many more months before that happens.

I was sensitive to cold early on and drank my Ensure Plus room temp until I found the Carnation VHC which I also drank room temp until the cold didn't bother me.

It's very important the you make sure he stays the course with his daily water and "food". Falling behind will get him into trouble real fast.

I did not have a tube at the recommendation of my docs. It wasn't fun but there are problems either way you go. I did find that the VHC helped me a lot because I had to drink less to get the same cals.

There were several periods of my Tx that sleep was a problem. The worse was when I was loosing my salava and I was just producing the thick stuff. I would wake up choaking all the time. I really didn't like taking any of the pills they prescribed and I don't remember any pills for sleep problems.

As his Tx continues, your husband will experience many more side effects depending upon his Tx. Don't hesitate to post often. You also will play a very important role and there is a Caregivers section that can be very valuable to you.

Good luck to the both of you.

Barbara,

David is right about "normal" taste disappearing. It happens all the time with head/neck radiation -- the only question is how quickly it happens, and how long it takes for it to return. Radiation is a cumulative process, so the side effects can be expected to continue for weeks or even months after the end of treatment (the rule of thumb around here is that it can take 1 month of recovery for each week of radiation).

In the meantime, your husband can't let his lack of desire for food dictate what he eats (or doesn't eat). Nutrition and hydration are absolutely essential for recovery, and there should be a hospital nutritionist that can help monitor his condition and make suggestions about how best to keep up his intake. Some of us didn't have tubes and got through by eating very soft foods (like baby food, fruit smoothies, Carnation Instant Breakfast, eggs, creamy pasta dishes, etc.). Others have found that a tube was absolutely necessary to maintain their nutrition levels - so do whatever it takes to get enough calories (and liquids) into his system.

Cathy

Like the other posts stated, your taste definetly goes. He'll have to eat, to nourish, not to enjoy. Not an easy thing to do at first, but you know you have to. I found using a straw when drinking boast and other drinks helped. That way it just goes to the back of throat and it's down! Also I was given samples by my chemo nurse of a product called Resurgex. I ordered them off of the internet. It's high in protein,and you mix it with water, so it's not milky tasting. I was able to get that down. I still use it for the calories and protein in my recovery. Make sure he takes in water also. Hope this helps.

Thanks for all the advice. Michael started the steroid pills this morning and now has had two. He is still not eating much, but at least he ate a little today. He is having six weeks of radiation (IMRT) - the last two weeks - really parts of three weeks due to Thanksgiving, he will be treated twice per day. He starts twice a day 11/20/06 and completes treatment 12/05/06. He is being treated at the Cancer Center of Providence Hospital in Mobile, AL. They are affiliated with MD Anderson. I think to some extent we are both still in denial that this is really happening and Michael thinks there should be some

Barbara,

Don't let him fall behind on his water and eating. Not one day! That's one of the best things you can do for him. Eating a little is not the goal. He will fight you on this but be persistent. It can lead to all sorts of problems. I'm not saying you will be 100% successful but the more you get in him the better off everything will be. I fell behind often and wound up in the ER twice and the hospital once. I would even lie to my wife about how much I had had just so I didn't have to go through the pain and nausea.

Denial is normal, we all went through that. It's our way of mentally adjusting to our Dx.

As far as the "easier cure"... I told everybody, including my docs, how barbaric I thought this Tx was. I wasn't worried about the cancer as much as I was about the Tx. I survived the Tx first and the cancer second. I understand that Tx we are recieving today is better than it used to be, at least from the long term side effects.

Hang in there, both of you.

Hi Barbara,

I want to echo what David is saying that Micheal needs to force himself to eat every day as nutrition/hydration will help minimize the side effects and help with his overall recovery. It will go quickly downhill if he doesn't eat. There were days when I felt like the food police with Jack but it did pay off in the end.

The PEG tube does make it easier to maintain calories and fluid on the days when he just doesn't feel like it, but it's also important to keep swallowing even if it's just a little bit at a time. If he's going to consider the feeding tube option you don't want to wait until he is beyond a point where they can do it.

I wish there was an easier cure and maybe one day that will happen, but in the meantime just keep telling yourself that this too shall pass. It's such a shock in the beginning that you can't really take it all in - that does come with time.

Best of luck to you both.
Regards JoAnne

Hi, Barbara, there is not much to add to the good advice above, except, as a fellow caregiver, I want to encourage you to also take the best possible care of yourself. You will get weary and quite likely worn down during the next few months, so find a way to rest yourself and you need to eat wel also. Amy

Thank you again for the advice. It is a full time challenge trying to convince Michael to eat when it does not taste decent. At least it is the weekend now - no treatment for two days and no work. I have a full time job too and been attempting to work about half days since he started treatment. That has been difficult too. Wherever I am not at (with Michael or at work) I feel guilty.

I actually work for in the health care field in early intervention for the health department. I semi changed careers when we moved to Mississippi two years ago. I had worked in community mental health for years.

Our relatively new status here is also somewhat of a problem. We have some "new" friends here who have been nice. Actually they have been very nice, but since we did not know anyone here when we moved so we don't have long term friends here. We do not have children and only Michael has a sibling who does not live in this area. I have cousins around the country, but no one here. So our support system is very limited. Plus Michael really just wants me near him at this point. So yes, I am tired already - probably more so from worry and sleep problems than actually doing things, but I am concerned about the possibility of me getting sick. Also since I work with young children - birth to three - I worry about me being exposed to colds etc.

So caregivers, what do you do during those moments when the bottom literally seems to drop out of your stomach with the fear of "what if it isn't cured?" or "what if it comes back?" As an old mental health person I ought to know how to cope with this better and it is better than it was the first few weeks before we got the stage 1 prognosis, but I still do get those moments of total panic every now and then. Probably no easy cure or magic solution for that either, I guess. Right now I keep telling myself that nothing in life is certain and to enjoy each day and moment, but right now the enjoyable days don't seem too enjoyable.

Hi Barbara,

My husband was originally diagnosed with Stage III tonsil cancer in May 2002, 3 years after we relocated from Florida to Indiana. We primarily moved to be closer to my aging parents, so his illness at the time and his recurrence (yes, the "r" word) has been a double-edged sword. We moved 900 miles in order to take care of them and the role has been reversed when these cancer episodes have emerged. Coincidentally or perhaps not, issues with the health of my parents have also flared up as things get going with my husband, so the sense that I'm not doing enough for the folks I love the most is sometimes overwhelming.

The four years between my husband's original diagnosis and now with the recurrence seem, of course, to have flown by. I wish now I would have been more attentive to all the wonderful things in our lives and less worried about the "what ifs," especially at the beginning of the remission; worrying about the "what ifs" did not keep the darn stuff away.

I remember saying the first few months after diagnosis last time and when treatment ended that it was like an uninvited, unwanted guest had plopped itself into the middle of our lives. We had to pay attention to this 'guest' but I would be damned if I would let it rule my thoughts. Maybe I even fooled myself into thinking we had this thing licked.

Treatment for my husband will probably start within the next couple of weeks. I, too, intend on working for as long as I can. Now, though, I feel like I'm cheating my employer as I don't feel like I'm completly there either.

My strategy I'm planning on using when the treatment gets underway is to check in with my husband and myself every morning with the question, "How are you/am I doing?" If either one of us is emotionally or physically shaky, I'm planning on being with him. It's just too darn important.

Good luck, Barbara.

Loretta

Loretta,

Thank you. I am so sorry that your husband is having a recurrence. I also know what it is like to care for aging parents. Very shortly after we were married 19 years ago my husband and I moved from St. Louis where we were both living at the time to outside of Buffalo, NY, my hometown, to take care of my mother. My father had died a couple years earlier and I am an only child. We cared for my mother for about 16 years until my mother died in 2000. My husband was absolutely wonderful to her. We had both always wanted to live in the Deep South and had tried to get my mother to move with us, but she did not want to leave her home so we stayed in NY. After she died we went through a lengthy process of sorting out and selling her home. We moved to Mississippi in time for 10 months of enjoying the area until Katrina hit. We were very fortunate with that with mainly just (lots of) tree damage. I felt some survivor guilt about that since many of our friends and others have so much damage from the storm and it will take this area years to recover. Michael and I used to semi joke about how we would have to live a long time to see this area anywhere near back to where it was before the storm. And now we have cancer.

Regarding working, since I have only been at my new job a little less than two years I don't want to endanger it. I have a great boss and co-workers and I have FML, but it will only stretch so far. I was reading the comments on the variable recovery times after radiation ends and it doesn't sound really great. I had thought I could work more after it ended, but it doesn't really sound like it. I can do some work out of my home, but my office is about a 30 mile one way trip and I do travel a lot locally to see my babies and families and for meetings. I am concerned about trying to maintain my job and care for my husband too.

I do really enjoy my job too although it has its down side too. I have had three of my babies die since August - one just last Sunday.

Thanks for responding. Good luck with your husband's treatment.

Barbara

Barbara,

My wife and I are owner operators of a fairly large restaurant and Cigar shop and I also own my CPA firm. She also is a celebrity chef and host on HSN and a flight attendent. My wife/caregiver/partner/other misc also takes care of her mom who is only 5 miles away.

When I was in the throws of Tx I don't know how she handled everything but she did. We had even just purchased a home for her mother and were in the mists of remodleing it ourselves so she had to take that bull by the horns until I was able to get back in there.

We had a large number of friends and employees that she could draw upon for help and support but when it came to me I really didn't want to be around anybody except her. I was always the strong one; the one to work 15 hrs a day; never sick a day in my life so I guess I was embarrassed to be so dependent upon others. I was home alone 6 days a week from end of rad till 10pm. She would come home from 3 to 5pm to REST and would call me whenever. I would either drive myself to Moffitt (40 miles one way) or she or my office manager/mini caregiver/errand person/glue to the business ends person would drive me.

That period in our life seemed like an eternity but, time wise, really wasn't. We are pretty much back to our abnormal life now but I'm still amassed at what she did. I even told her that I would go with her to NY city for a few days of shopping and I promised that I would do what she wants and I would not complain or yell. That alone should tell EVERYONE what I think of my wife!!!

Morale to my story is that we all can do some amassing things when we must...so hang in there and it will be over soon.

Barbara,
This may seem like an overly simple thing, but it helped me a great deal to motivate myself to get sufficient nutrition and fluids in me every day.

I put a "wipe board" or dry erase board on the refrigerator, and kept a daily running total of every calorie I consumed, and every ounce of fluid I took in.
As I said, it is a simple solution, but it is a simple way to keep track. Most importantly it would show when I WAS NOT meeting my goals of 2000 calories and 2 liters of fluid every day.

It also allowed my wife ( also known as the food nazi )to keep track.
Having the board staring at me all day helped to motivate me to keep up with nutrition and hydration. It is difficult when the pain meds completely suppress hunger as well as pain, and nothing you eat tastes like anything. The patient needs some external motivation to eat.

Just a suggestion, hope it helps.

Chuck

Barbara,

I know it can be scary to read about some of the experiences of people who have dealt with this, but remember that some of what you're seeing is from people who were Stage III or IV diagnoses and had exceptionally tough times with treatment. As you keep reading on this forum, you can see that there is a pretty wide range of experiences.

I was a Stage II -- had surgery first (was out of work for a couple of weeks to recover from surgery) and then, a couple of weeks after that, started radiation. Back then, radiation was less targeted than it tends to be now, so it was general field radiation from my cheekbones down to below my collarbones. While eating and swallowing were extremely painful for weeks, I was still able to continue working part time (about 5-6 hours a day) and drive back and forth to radiation. My radiation oncologist had told me I would lose weight and I was determined to prove him wrong. Since I'm the cook in the house, I kept experimenting with anything I could think of in the category of soft/semi-liquid foods to keep at a targeted calorie level. While none of it tasted good, the objective was to get it to slide down easily and provide nourishment. I had to use numbing agents in my mouth for several months to minimize the pain of eating and drinking, but was able to keep the weight loss to around 10-12 pounds.

It does take months for taste buds to come back, and dry mouth can be a problem (although I've gotten back a surprising amount of salivary function), but once I got past the first few months after treatment, my quality of life got back to the point where I have NO complaints.

Cathy

Cathy,

I know that we are very lucky with just having a stage 1 cancer. Michael just had IMRT radiation recommended. I think if he had gotten started a little sooner after the initial dx that it might have been a tiny bit easier. That delay from the dx on 9/12/06 to starting tx on 10/24/06 was very anxiety producing. Are these delays with starting tx normal?

The first cancer center with which we were involved kept putting us off. When they cancelled the start of radiation on 10/23 and couldn't tell us when it could be rescheduled that was very upsetting. We were then fortunate in finding another, and I think better, tx center nearby.

My husband actually was our primary chef at home. He is self-employed / semi retired and I work full time. I used to enjoy cooking too, but the older I get the more tired I am at the end of a work day. I am trying many varieties of food for him now, but he is still having a lot of problems making himself eat food. He says everything is bitter and / chalky. He will get weighed tomorrow at the cancer center and we will see where we are with his weight. We have a scale here, but I think we are both afraid to look.

We have some of the numbing agents already, but my husband is afraid to use them. He thinks they will numb everything and he will bite his tongue and will feel worse. Right now he is taking minimal pain meds - he was taking more a couple weeks ago. The actual cancer feels better right now, and his throat pain is tolerable. It is just the taste problems at this time.

Regarding salivary glands after treatment, we read some studies about acupuncture actually helping with this. Does anyone have any experience with this? Of course finding an acupuncturist nearby will be a challenge too.
Barbara

Barbara,

The time between diagnosis and the start of treatment doesn't sound that unusual to me, based on what I've seen here from many other posters. I know I had about 5 weeks between my diagnosis and surgery, and another 5 weeks between surgery and the start of radiation. The time leading up to my surgery included several types of scans, visits with several H&N specialists and a meeting with the Dana Farber team to discuss what they thought would be the best overall approach in my case. When I asked my oral surgeon why he didn't just remove the entire tumor as soon as he knew it was cancerous, he said there was a risk of causing more harm if he just forged ahead on his own without having more tests done and getting the tumor board involved first. I can't argue with the results.

I would encourage your husband to try the numbing agents if they can help him get more food down. The ones I had were really only effective for about 15-20 minutes, so there weren't extended periods of time where I was at risk of biting my tongue. Also, I really wasn't trying to ingest much of anything that required chewing - my whole diet at that point was very soft, squishy stuff that could just be mashed around and swallowed with as little effort as possible.

There are quite a few posts on the forum from people who have tried acupuncture for salivary function. I think if you search for them, you'll find very mixed results. Personally, I've gotten quite a bit of help with saliva by using Salagen (oral pilocarpine). Some others here are using Evoxac and prefer that.

Cathy

Well, it is day three of steroids twice per day to attempt to help with the inflammation and eating. Michael does seem to be eating a little bit better, more so in the mornings than later in the day. We seem to have his best foods narrowed down to liquidly soup with small pieces of vegetable and meat and noodles, beans, and eggs. He still will drink some Boost, but not usually more that two per day. I have ordered some sample sizes of some of the other nutritional supplements other people mentioned. We did break down and weigh him here also. He weighed 210 last Monday at the cancer center. He weighs 203 on our scale today. I don

7 pounds in one week is not good at all, assuming the weights are accurate. Even if you are off, you probably aren't off by much and it's still not good. To put this in perspective, it takes appx 500 extra calories per day to gain 1 pound in a week. So to gain back the 7 pounds in a week he would have to consume an EXTRA 3500 calories a day for 7 days!!

I guess he has finished 3 weeks of rad. Remember the 2 weeks post Tx will probably be some of his worse weeks. That's when I lost the most weight. I lost 7 pounds in a week and ended up in the hospital with the docs telling my wife I was 24 hours from kidney failure.

Don't let him fall behind. You have got to be the "bitch" and make him consume 48ozs of water and at least 2000 cals EVERY DAY. I found the quickest, easiest and less painful way to do that was by consuming the nutritionally balanced drinks like VHC, Boost and Ensure. But don't forget the water.

I know it's the toughest thing that he (and you)
have to do right now, but it's also the most important. So many things can go wrong if he doesn't keep up and believe me, neither of you want to learn this lession the hard way.

You only have another 6 weeks or so to tough it out but it's a very important time in his Tx.

Well at the hospital it was only six pounds of weight loss, but not a big difference. He has eaten relatively better yesterday and today, but it is difficult. They are going to weigh him again on Wednesday and see where we are at. I am currently making soup again. I went to three separate groceries today to try to get him some more chocolate Boost with extra protein - none of them had it. Shopping here is a challenge too. We are in a fairly rural area. I got him some regular chocolate Boost and extra protein strawberry. He doesn't like the strawberry. I will try some different stores tomorrow.

After we drove to Mobile for his radiation today their machine was down and they hope to have a part for it by tomorrow morning. He will have to make up with a double radiation session sometime later this week. Since I am still attempting to work this week, these schedule changes are definitely playing havoc with my work schedule. Today is a holiday. I was going to try to work this afternoon anyway, but with the delays in Mobile when they thought they would get things fixed that got too complicated so I am not working (at my job) this afternoon.

Barbara

Hi, Barbara, John bought Hersheys syrup[like you pour over icecream] and added it to the chocolate Boost for an additional 100 calories. He also did the same thing with the strawberry syrup. By the way, adding powdered milk to whatever you cook adds calories[cream soups,milk shakes,etc.] Amy

Hi Barbara,

My husband is at day 10 of radiation, so far he holds his weight, but he is losing taste quickly. I give him a shake every morning made up of various stuff our nutritionist recommended. Now I am adding Skandishake and Benecalorie liquid (it has a neutral taste) for extra calories. I added the shake calories up today and it came to 600+. If he can get 2-3 down a day, and whatever else he can tolerate as treatment goes on I will be happy. I ordered a lot of things on-line, but it does take a few days to arrive.

Best Wishes,

Michael ate relatively well yesterday - he had two kinds of home made soups, some beans, banana pudding and three Boosts (I finally got him to do more than two). I have ordered a couple other supplements I found here and one I found in a head and neck cancer cookbook. I plan to order some samples of Skandishake. But tell me more about Benecalorie with the neutral taste - I know the neutral taste part sounds appealing to Michael right now. How many calories does it have per serving?

I think Michael currently is thinking a feeding tube might be easier. The biggest negative thing he discovered from his nurse yesterday, which I had already thought of but not mentioned to him, is that he is a bath taker not a shower taker and he probably will have to take showers not baths with the tube. I get pretty depressed for him thinking of all the things he has had to give up with this experience. Stopped smoking, almost stopped coffee (he still drinks a few sips a day - he used to drink about three pots), spices (he was a really good chef himself and cooked with a lot of herbs, spices and hot sauces - at one time he actually had 30 different kinds of hot sauces in our refrigerator), going out to eat, pretty much going anywhere except for doctors appointments, driving, and now maybe baths.

I will find some more of his favorite Boost today. He was adding some extra milk to it, but he doesn

Both Barbaras,

You need to try Carnation Instant Breakfast VHC. It has 560 calories in a nutritionally balanced formula. You must order it through your pharmacy like CVS or Walgrens, etc. but it costs no more than Ensure or Boost Plus. It really saves time and swallowing and is real convenient.

I used it and still do.

David,

Good news / bad news today re: Michael. Bad news is that he is second guessing the rationale for the treatment twice per day the last two weeks of radiation. He wants to do a major interrogation of the doctor tomorrow about that. The thing I have heard is that there is a higher "cure rate" with the tx twice per day at the end. He is just feeling really tired and miserable already and doesn't want it to get worse. I just hope he will agree to go along with it. He does like the doctor so hopefully he will help convince him.


The good news is he has been eating more yesterday and today and I think, if our scale is right, he has actually gained a couple pounds.
We tried Carnation instant Breakfast and he thought that was too sweet. I assume the VHC is somewhat different? He also really doesn't like milk now. I thought about trying soy milk since that is what is in Boost I guess and that seems to be the most tolerable right now.

Barbara

Suggestions for High Calori Liquid Diets:
Fortify recipes with powdered milk
Add regular yogurt, cottage cheese and ice cream to shakes
Add 1 to 3 tsp vegetable oil to everything you cook
Lasagna, spaghetti, mac and cheese can be blended and liquidfied
Fruits-liquified with own juice, strained baby fruits, whipping cream, 1\2 & 1\2, cottage cheese, yog, custards, puddings, cheesecake, other juices, etc.
Visit www.liquid-diet.com\
Oatmeal: 1\2 c quick oats
1\2 c heavy whipping cream
1\2 c water
Combine ina micro safe bowl and nuke on high for 2 min. Remove and stir wellAdd raisens, honey, maple syrup, or brown sugar. Calories 714; protein 15 grams,grams fat 47,sodiun 47 mg, calcium 122 mg
visit www.cancer.org/docroot/MBC/content/MBC_6_2x_what_to_do_before_treatment_
http://web.cancernutritioninfo.com/main.cfm?id=1610RequestTimeout+500
Boy, I hope these addresses still work. Amy

Barbara S,

VHC is Lactose Free for what it's worth.

Re the double radiation, my RO tells me now that Moffitt is testing such things as nonstop rad, meaning 7 days a week; doubling up one day a week and twice a days more frequently. They say they think it's best not to give the cancer anytime to heal itself. This has just changed since I was Tx a few months ago so that thinking must be sweeping the cancer Tx community.

Tell him it's going to be rough either way so, even knowing what I went through, I would have agreed to double up if my docs thought it would enhance my survival chances. I really don't want to go through the Tx again so I would want to take the best shot.

Hi Barbara, I'm just catching up with your post and wanted to answer the question on what do you do during those it's all bad moments. Caregivers and patients are both experiencing cancer from different perspectives and there is no good role to play. It's a combination of fear, guilt, and a sense that all the security we thought we had just went right down the toilet. Time literally stops in the normal sense.

Fears about will this work or will it come back are more prevelent in the beginning when everything is such a raw nerve. It's hard not to second guess the decisions we've made but we don't have the perspective on knowing that there is no universal treatment protocol, that every cancer is different and treatment protocols need to be individualized for stage, location, nature of the tumor, lymph node involvment, and general health status. It's just too soon to be comfortable that we're doing the best we can with the information we have. There's a tendency sometimes to think that everyone must have a better treatment protocol - or at least an easier one and that consumed a lot of my energy at the point you're at.

Everything felt weird to me in the beginning and there were days I was positively manic in trying to be on top of it all. It was exhausting and in hindsight, futile. Fortunately that passes over time and although it doesn't get easier, it does get more familiar and somehow we get through it. I thought that time period was never going to end but here we are on the other side of the treatment portion, still working on recovery but finding a new normal.

None of our prior professional experience prepares us for this no matter what we did before the diagnosis. Whatever our lives were before, now we're patients and caregivers. Also the timing is never good, you dealt with this on your birthday, we dealt with it on our 25th wedding anniversary when we were supposed to be in Hawaii getting remarried at sunset on the beach. There's no good time to get cancer or short cut or easy way to live through the treatments and our fears, just know that over time you will put it all in it's proper place. Remember that a bad day is just one day - there will be others. We go moment to moment, and then day to day.

I'm also in health care working in home care and hospice. Despite my 35 years working with cancer patients and caregivers I can honestly say I was not in the least prepared to be one. I believe this experience is not over for Jack and I, but we are in a better place than we were and we've rescheduled that trip to Hawaii. Visualizing yourself in that better place helps. For me it was knowing that I had a gown, a maid of honor, and pictures of a bouquet and a cake that have been waiting since last February to get used. The hotel wedding planner sent me a Hawaii calendar to hang in our bedroom so we would know what we were coming to when all ths was over. Every month, I flip the picture over and think about how we're that much closer to getting there.

Before you know it, you're getting on with your life. Find your Hawaii to get through those bad days, and ask for help when you need it.

Regards JoAnne

Joanne,
That was so beautifully expressed. This post should go in the "getting through it' project as an inspiration in how to get through it.

Eileen

Joanne,

That was beautiful and so perfectly expressed. Leon was diagnosed in September 2005 with our 25th wedding anniversary coming up in May 2006(cancelled cruise)and our first grandchild was born in January when he was in the midst of radiation treatments, so you're right the timing is never good, but we got through it and so glad we are now at the looking back part of this whole thing.

Joanne,

That was beautiful and so perfectly expressed. Leon was diagnosed in September 2005 with our 25th wedding anniversary coming up in May 2006(cancelled cruise)and our first grandchild was born in January when he was in the midst of radiation treatments, so you're right the timing is never good, but we got through it and so glad we are now at the looking back part of this whole thing.

Dear JoAnne and Everybody,

Thanks so much for all the thoughts and wisdom. People really don

Barbara,

Believe it or not, the first 2 weeks or so AFTER Tx will probably be his WORSE. Be prepared and somehow WHEN HE'S NOT FEELING TOOOO BAD, work that into the conversation to make sure he doesn't think the last rad day is the end of his torture. It's definately a great milestone but he will still have a week or so of pain, etc left. Then it will get better quickly, almost overnight which IS SOMETHING TO LOOK FORWARD TO.

One more thing re your comment "not that I am so great".....You are worth your weight in gold to him right now and he won't likely ever forget it. I only wish I live long enough to show my wife how much I appreciate what she did for me.

David,

I have told him a few times that it does not get better immediately when tx is over, but I am not sure that sunk in yet. He is really looking forward to feeling better and to hopefully being able to enjoy food again.

Our doctor's favorite story was about his boss who had the exact same type of tumor and treatment as Michael. Our doctor says his boss was back in the operating one month after his treatment and surfing three months later. I, at least, have really latched onto that good outcome scenario.

Michael did actually ride along with me on my errands today and we were out for several hours of non-medical time. Nothing really fun, but it was nice to have him along and I think he enjoyed being on a route other than to the cancer center. He even helped me shop a little at the grocery. I keep trying to keep him out of crowded places, but he sneaks in once in a while and I try not to panic. I know I hover and do panic at times when he gets around many people. Not that he isn't potentially being exposed to a lot of extraneous germs at the hospital. Michael used to be our primary grocery shopper and really is much better at it than I am. I do keep telling him how much I did appreciate all the things he used to do that I took for granted.

Barbara

Hi, Barbara. When John started having alot of trouble sleeping at night and needed to use the suction machine alot during the night, he moved to the downstairs guest room. I bought a baby monitor, hung one speaker on his bed frame and the other sits on my bedside table.I can hear him move around and if he needs me, he just has to speak my name-not yell. This has allowed me to sleep better at night and he knows I'll be there when he calls. When we have to spend the night in a motel, I get a 2 room suite with a micro, frig and sometimes a small stove. I take food too because eating out is not on our agenda at present. The 2 room suite also allows John to crash when he needs to and I can stay up and not worry about disturbing him [or visa-versa]. And you are right, for a while yet, you are in a whole different world, one that has a language of its' own and challanges you never dreamed youall might face. You just have to stay very strong and start each day with the attitude "we can get through this". Please take care of yourself so you can keep taking care of Michael. Amy

Hey Barbara,

Don't worry about the hovering thing, we all did that it's part of caregiver syndrome. The important thing is to remember to back away from that when he starts to feel better, but for now it's needed. David is SO right to point out what a critical role you are playing, don't sell yourself short. After this is all over you'll be leaning on Michael again but now you're both doing what is needed to get through this.

I remember that it was hard for me to think about things like going back to work at this stage, you have to concentrate on getting through the treatments. Most of us go back because we have to, we still need an income and health insurance to pay those bills that don't care about the cancer we're dealing with. I was on FML for 7 weeks and when I did go back I organized our friends - and anyone who looked remotely interested - to help transport Jack to and from daily radiation treatments and the physical therapy, speech therapy, oncology dentist appointments and that was a BIG help. I still went with him for the doctors visits. People are pretty amazing in situations like this. Also, he really is going to be worse after treatment ends so you have to consider what time off you may need at that end. If there is any flexibility to go back part time, FML can be taken in hourly increments.

I'll bet he did enjoy getting into a non-medical setting, it's a connection with his interests and pre-cancer life. Jack is the cook in our family, I'm the microwave queen, and when this happened I had to relearn some basic skills so we wouldn't starve.

The first time he asked for dinner I offered him a frozen Jenny Craig meal. Turns out that's not entirely normal so I had to modify my behavior. Jack likes grocery shopping too - plus he knows where everything is in the store. He came with me on days he was up to it just as a diversion. When he wasn't, I had him help me make up the list and then tell me where I could find it in the store just to keep him connected to something he really enjoyed. As long as people are not getting up in his face it's probably fine that he's there. Don't forget outdoor places particularly if they have benches. I took Jack to the Jersey shore one day - about a 45 minute drive. We didn't stay long and he was nauseated coming and going but he was one happy camper when he was sitting on that beach. Supplies, medicine and food can be packed in a bag and go with you. When he needed to use the PEG tube we just went back to the car.

I also discovered that cook books are like a procedure manual and incredibly helpful for those of us who prefer to order out. On the home page you'll find a products link and there's a cookbook for easy to swallow, easy to chew foods - and more importantly easy to make - that I quickly ordered. There were lots of ideas that helped him maintain his swallowing during and after treatments. He had a PEG tube and used it often but he also kept swallowing something every day to keep the muscles working. I'm happy to report that Jack's back to cooking now and still using ideas from the cookbook.

Micheal will enjoy food again but be prepared that his taste will go and the burning in his throat will temporarily halt that. It will feel like it's never going to end and never going to improve but it does. He may not be able to process all that information right now, but keep telling him because he's probably hearing it on some level.

David, you are so sweet when you post about your wife. It's amazing how an experience this awful can reveal the wonderful aspects of our relationships with people we love. Some things you just can't buy in the store.

Regards JoAnne

I need to make several prefaces to the following remarks. 1st, JoAnne and I have been communicating via e-mail for quite some time now and many of her e-mails have had me laughing for hours afterwards-just like the Jenny Craig dinner comment. I've got her beat in the cooking department, but she's way ahead of me in her nursing skills and her ability to find ways to cope using humor and wisdom at the same time. One of the things that has often been revealed to me on OCF is how much we all do have in common. My husband used to be in charge of the grocery shopping and did more than his share of the cooking [altho I had to teach him the "Southern" way of doing things:D]When I started going to Walmart with the list, John would tell me what isle to find each item on. We used to split the household chores and we went to work together every day. Just like most here, this disease has changed our lives forever. It has made us appreciate our marriage and partnership more, it has confirmed why we fell in love and it has revealed to us the strengths we did not know we had. Barbara, I,too, have hovered [still am] and have earned the nickname "Nurse from Hell" that John fondly [I think] calls me. But we are in this fight together and since he is working so hard, I am going to do the same. [Sometimes our directions are a bit different, but that's to be expected]. So, Barbara, welcome to the Caregivers' Club. Just remember, you got friends here and support when you need it. Fondly, Amy

Michael did eat relatively well yesterday, but he still looks thin to me. We haven

Hey Barbara,

Sounds like a great idea to send out the annual cards and letter, particularly ones that are special like you've gotten. You've expressed some great sentiments here in your posts so that's a good start. You're in the right direction and it's something you and Michael can do together. Some days you'll encourage him and some days he'll encourage you. TEAMWORK!!!!

By the way what does an egret look like?
Regards JoAnne

JoAnne,

They are big beautiful white birds with long necks and long pointed beaks. They eat mostly seafood and small reptiles but will eat just about anything including table scrapes. If you leave your door open they will actually walk into your house looking for handouts. If you give in, you have a new "pet". One did that a few years ago in our house only to be greated by our 8 cats. He never came back, nor did his friends and my cats were glad because they can stand 4' tall with a sharp 9" beak. LOL

Hey Barb,

Try scrambled eggs, Oatmeal, Matzo ball soup. I lived on scrambled eggs with cheese, oatmeal with lots of brown sugar and yes, dare I say, butter, and matzo ball soup. I don

Hi,

Happy Thanksgiving everybody. We were in Mobile Monday through yesterday for radiation treatments twice per day. We now have 4 days off from treatment over this weekend. Then it

Hi, Barbara. It sounds like Michael is doing pretty well at this stage. Good for him. Hope you enjoy the break at home and the biscuits and gravy. Have a restful weekend. Amy

Hi,

I am sorry I have been off line for a while. I have missed your comments. Michael completed his radiation treatments on 12/5/06. They said he did very well. The nurse actually said he did better than most people with getting through it all. It has been so nice not having to go every day - twice per day for the last couple weeks. He lost the most weight of a one week time span in his second week post treatment, but not a huge amount - 7 pounds, but by 12/27/06 when he saw the oncologist he had actually gained almost 3 pounds back.

Michael had his first follow-up appointment on 12/27/06 and the doctor told him he is looking great and the nurse again commented that he is amazing at the rate he seems to be recovering. He goes for his first CT scan on 1/23/07 and will have his first PET / CT scan in March or April. We are both trying not to worry too much about these, but just enjoy the good days. He still seems to feel much better in the mornings and at about 3:00 or 4:00 PM he feels worse and his hardest meal to eat is dinner. He did actually eat a steak on Friday evening and got it all down. He wanted another one last night and it wasn

This is absolutely great news, Barbara and Michael Y'all can just plan to eat your way through Mississippi and Louisiana [I'm envious because I grew up in a family of Mississippi cooks-YUM] Have a great 2007. Amy