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