Swallow test results

VivianLee5689

Well David was upset yesterday afternoon when he failed the swallow test again. He aspirated every time he ate or drank anything. The voice/swallow therapist said she won't clear him to eat or drink until he does a barium swallow test. Unfortunately she has no openings until October 30. David is supposed to start chemo/radiation on the 29th. He was very discouraged by her decision. He is somewhat afraid to swallow anyway, but he has such a hard time getting enough nutrition in via tube feeds. He is down to 148 pounds now. He gets worn out after a 15 minute walk and sleeps at least 18 hours a day. It's so stressful knowing he hasn't even started the chemo/radiation yet. I just pray that once we get through this patch that his body heals well and quickly after chemo/radiation. I hope that we can have a good time together on Valentine's Day, which is the day he proposed to me. I am trying to visualize good times ahead, because it is so depressing being where we are. We haven't even had a honeymoon yet.

luvofmylif

Please hang in there. We
Please hang in there. We also had the BOT surgery and the healing is slow but it does happen. By the time you are done with chemo and radiation his surgical area will be healed and then you will start recovering from the chemo and radiation. I know its hard now but better days are ahead. It is amazing what the human body can do....alot of the healing process is just time.

We start tomorrow with our first chemo and radiation. I am scared but all the brave people on this sight give me strength. Please tell your husband he will get better...my husband is living proof.

Prayers to you...remember to believe. And, I know by Valentines day we will all be enjoying a wonderful dinner with the one we love.

Joan

cureitall66

Exercising...
We were told to keep up the exercising, even if tired. Of course, when your tired you need to get your sleep. But the exercising is supposed help combat the fatigue that I'm sure he's also got. Keep him moving too.

longtermsurvivor

Vivian
It is a really tough thing you both are going through. He is depressed. You may be also. At the moment you both ned to just live within each moment, because you are set up for further disappointment hoping for certain results at a certain time. He cannot swallow safely right now. So there is no hurry on the barium swallow. You already know he will not pass it. You two need to optimize the situation with his tube feedings, because thas the way it will be for awhile. And you need to talk to his doctors about the possibility of depression. No shame in that, lol. This is an awful lot to process. set reasonable priorities and manage them today. Tomorrow will have to take care of itself.

Pat

phrannie51

longtermsurvivor said:

Vivian
It is a really tough thing you both are going through. He is depressed. You may be also. At the moment you both ned to just live within each moment, because you are set up for further disappointment hoping for certain results at a certain time. He cannot swallow safely right now. So there is no hurry on the barium swallow. You already know he will not pass it. You two need to optimize the situation with his tube feedings, because thas the way it will be for awhile. And you need to talk to his doctors about the possibility of depression. No shame in that, lol. This is an awful lot to process. set reasonable priorities and manage them today. Tomorrow will have to take care of itself.

Pat

Longtermsurvivor has hit the nail on the head.....
Learning to live one day at a time is a challange....we've lived our lives planning ahead, looking to tomorrow to be something different, etc. Roping in and staying within this 24 hours is a learning experience. Everytime I'd catch myself "wishing this was over", or just wanting to get past something that was uncomfortable, I'd conciously rein myself in, and MAKE me stay in the here and now. Allow knowing that it WILL be over, that this hurdle WILL be overcome soon be my guide for that day. It really took a lot of concious effort for me to learn to do the "one day at a time, one foot in front of the other"....the payoff is....it makes treatments and disappoints go by faster, AND at the end of treatment you've learned and instilled a good life lesson....to stay in the day.

He WILL pass the swallow test eventually, and he does have a tube, so he isn't going to go hungry...I think of all the people on here who didn't have tubes and had to get their food down thru all that pain and misery....man, I honestly don't think I'd been able to do that.

p

PS...I can tell you this, too....all that pretend drooling I did over food I couldn't have has made the last three weeks of my life a real adventure....I'm enjoying hell out of my eating frenzy...and I would have missed this if I didn't have to go without for so long .

blackswampboy

longtermsurvivor said:

Vivian
It is a really tough thing you both are going through. He is depressed. You may be also. At the moment you both ned to just live within each moment, because you are set up for further disappointment hoping for certain results at a certain time. He cannot swallow safely right now. So there is no hurry on the barium swallow. You already know he will not pass it. You two need to optimize the situation with his tube feedings, because thas the way it will be for awhile. And you need to talk to his doctors about the possibility of depression. No shame in that, lol. This is an awful lot to process. set reasonable priorities and manage them today. Tomorrow will have to take care of itself.

Pat

much wisdom on these boards
I'm taking the above advice seriously myself.

nobody loves their tube. I don't. mine leaks, is sometimes kinda sore, and the damned thing just gets in the way.
and I've spent much of my life in chinese society...where eating is an obsession, and the center of family and social life. I've missed a lot by not eating.

but when I hit a low of 115 lbs., I got the message: learn to get 2000+ calories per day via my tube, or end up getting fed by IV in the hospital. that changed my perspective right around, lol.

someday soon I'll be sharing ma-la hot pot with my son, relatives, and friends...in the meantime, using my tube to get back lost weight is my obsession. for me, there was no other choice.

CivilMatt

tough start
VivianLee5689,

I agree with those above. Set reasonable goals; deal with the here and now. We (Americans) are raised in a hurry up and get things done society and cancer treatments don’t give a hoot about your (wish list) schedule. I am sorry, but you are on cancer time for right now. Some of it happens fast, but much of it happens incredibly slow. Right now you need to figure out how to increase his calorie intake and keep his weight on, but even this, don’t let it consume you, I think everyone of us lost weight during treatments. Things are going to work out, your doctors are not new at this and they realize you are having a tough start. Before you know it, it will be groundhog day (treatments, day after day), and then it will be over. Remember to be honest about depression, there are great meds for that. I HAD TO take Lorazapam for anxiety during mask time and it was no big deal. Today, I am on no meds to do with treatments.

Best,

Matt

katenorwood

Agreed !
Hey there !
You two have been through an awful lot. One day at a time, sometimes one foot in front of the other. We are here for you always ! Katie

Ladylacy

katenorwood said:

Agreed !
Hey there !
You two have been through an awful lot. One day at a time, sometimes one foot in front of the other. We are here for you always ! Katie

Feeding Tube
Please make sure that your husband is getting enough water thru his feeding tube so he stays hydrated. Being dehydrated can cause you to be very tired and plays with your mind. My husband when he started his journey in 2010 didn't use his feeding tube, at first, like he was supposed to and became very dehydrated especially when taking Cisplatin. Once he started getting fluids he learned exactly why he needed to use his feeding tube. You can get nutrition that is loaded with calories. Nutren 1.5 has 375 calories a can and so does Ensure Plus (we used the store brands because they were cheaper). One of the Instant Carnation drinks has over 500 calories a serving. He has always been very skinny so the doctors were very concerned about weight lost.

Radiation will be hard and swallowing will be very hard during radiation so the feeding tube will be needed. My husband has been thru 70 radiation treatments on his throat. The last time was this year for which he just got an all clear and the surgeon dilated his throat and he is able to swallow again. Soft foods at first.

I know that depression for both of you will be there. My husband wouldn't admit it at first but now does. Your husband can fight it, mine is 75 and has fought it twice since August 2010.

Best wishes, Sharon

Hondo

Hi Vivian

I too agree just hang in there for now, David has a lot of the same problems I am having. I did all the treatments prescribed by my doctors and nothing worked. So I had to start looking for myself and found out about Lazar Nerve Treatment, I found a doctor who agreed to try it and see if it can help. I am only in my 8th treatment and it is promising so far, so much so that my ENT set me up to have HBO treatment at the same time, I start the HBO treatment on Monday. Stay in touch and I will let you know how it all comes out. Never give up hope and never stop praying.

God Bless
Hondo

patricke

SLOW PROCESS
Hey Vivian, the hard, frustrating reality that I have come to realize, is that the recovery process is very slow, measured in months and years. Once I understood the time line, and accepted it I was able to move forward one day at a time feeling much better about it, with much less stress. Hopefully David will be swallowing sooner than later, but in the meantime I encourage both of you to keep in mind that is is a very slow process and just do whatever needs to be done for tosay. In regard to calories and the tube feeding, I pour FiberSource HN cans down for nutrition, when I am only using cans, such as when I am traveling. At home, my wonderful wife, Diane, blends my meals (whatever she has prepared for a given meal) using a Vitamix blender (expensive, but I believe they give discounts for medical problems), which provides for plenty of calories, and balanced nutrition. The Vitamix takes 3 minutes to liquify anything that is placed in it, whereas conventional blenders are really not up for the task (we burned out 5 before we found out about Vitamix), so that is something to consider. I hope that you and David have a great Valentine's Day, it is several months away.

PATRICK

Elizabeth 1978

Swallow test
I know what you feel but keep on pushing him n tell him to think he can, I got the same problem but I sit with him n tell him we can , we just gone thru our 2nd year of marriage n it's sad to think of all the bad news but hang in there.