Hi Jennie -

I am glad to hear your husband has come through surgery ok. I agree with Gary on the recovery side of things. Surgery & recovery was easy compared to chemo/radiation treatments. My husband, Kenny had many complications - but he finally made it through his last treatment in Sept 05. You are now in the toughest job you have probably ever had (and that counts child birth!). Here are few helpful tid-bits I have learned during the past few months:

1. "Faith is a powerful sword" - hang on to that faith. Here's the tough part ... you will learn that the "sword of Faith" can get very heavy after months of treatments -- rely on your family and friends to help you hang on to that.

2. My husband's dad & sister wanted to 'do something' to make Kenny better. They took over for me so I could escape to a movie or even go out of town (for work & pleasure). So - put a lid on the guilty feelings of 'I can't go out, because it's not fair that he can't go out'. You'll need your sanity to get through this.

3. Your pharamist is your friend. You asked about the medications. Tell your pharamist that your husband has tongue cancer and needs all medications to be liquid. Our pharamist knew this and if a doctor called in something, she knew immidiately to confirm an alternative drug was ok if the original one did not come in a liquid. You can also crush some pills, but not others. Ask.

3. You'll become very familiar with many medications before this all over. So ..keep an updated list with you at all times.

4. A cool mist vaporizor for the bedroom helped a little during the worst of Kenny's treatments. Just a little more humidy in the room helped him sleep a bit better.

5. Insist on anyone wanting to visit that they call before 'stopping' by. It did not take our family and friends long to learn that if it was a 'bad day' they did not need to visit. And there were weeks of 'bad days' during the end of radiation and just afterward.

6. Your health and his. It took me months to finally get Kenny to try anti-depressants during his treatments. Depression is a side-affect of many of the treatments. Don't ignore this. Also - make sure you take care of your mental health as well.

7. Take care of today only. Don't worry about tomorrow -- just do what you can today.

Keep visiting here to get support. Hang in there and know that you are not alone.

Carol

Hi Jennie,

I must be the luckest person on this forum!! Had no side effects from IMRT radiation, had no side effects from chemo, and I also have used the peg tube the first time was for 7 months and I had it reinserted about two months ago. I inject it in with the syringe in about 10 minutes. two cans of Jevity with Carnation Instant breakfast mixed in, One-half cup of protein powder mixed in warm water, two syringes of gatorade and like Brian says two syringes of water to keep the tube open. I have never felt sick or had any problems with it. It totals about 1000 calories per feeding. Was down to 126 and am now back to my precancer weight of 145!! I hope Erik can reach the same point I am at on the PEG issue.

Love Ya, Danny Boy

Jennie, just one word about the hot tub. Since one of my favorite activities is to lounge about with a book in a bathtub, I asked my surgeon about "tubbing" it. He absolutely forbade me from anything but showers. So for a good seven months I did nothing but showers. However, after the tube was finally pulled I savored swimming pools and tubs again.

Funny thing though, after the tube was pulled and I went for my first tub soaking, I noticed that the filled tub didn't even REACH my incision site where my PEG was. ARRGH!!!!!

Jen

Just a note. I was wondering if your husband is tolerating the liquid food in his tube any better. My brother (also 32 at diagnosis - but stage 4) also had a problem with the food. He lost 70 lbs. before we finally found a product called "Serious Mass" and he was able to keep it down and maintain his weight. It is high in protien. If you are interested I can send you a website that lists its nutrients and you can discuss it with your doctor. My brother was also in a great deal of pain. The doctors were never able to get it under control. Please, if your husband continues to be in a great deal of pain make them do more tests because something is wrong.
Many people will offer their help - please accept it. If you don't need it now, maybe you can call on them later. If there is anything I can do, just say the word and I will do everything I can to help you.
Your family is in our thoughts and prayers.

Erik here ( Jennie's husband)
I accidentally pulle out my Peg tube (got caught on a towel) and had to have it put back in. I really think that something was wrong with the innitial Peg tube placement because with this new one I am able to put 60-80 cc's through it very rapidly without any nausea or problems. I am only using it to put water through once a day to keep it open right now and am able to eat everything by mouth as of now. It is nice to know that I have it in place for when I start Rad/Chemo next week.
Thanks to you all for being such a great support to my wife and I though the first stages of treatment.
Erik

Way to go Erik!

Hi Erik & Jennie

I just checked out this website today and read your post.
I agree 32 is a young age but I was actually diagnosed with tongue cancer at the age of 23.Think positive....my doc said the younger you are, the higher your chances of fast recovery.
As for radiation,it varies individually........I had 6 weeks of radiation after surgery and before starting,i was terrified as i'd heard of other people's experiences........but luckily mine wasn't too bad.I was determined to maintain my weight and despite the nausea, I'd keep on pouring liquids inside through my peg tube.Overall,radiation wasn't the experience I'd actually dreaded.