Michaelllll, how are youuuuu?

We eventually went to the port feedings and were very grateful for them . It was kind of scary at first, I was just positive that if I did not get all the bubbles out of the line that I was going to kill him myself! The peg feeding would not work for Pete , the nausea issue was just too severe.
My best to both of you , I know this is a very hard time in his road to recovery but, that light is there guys...honest!

Marica

Hi Michael,

So sorry to hear about the ringing. Sounds really miserable. I do have one idea for you. My husband has been going through hyperbaric oxygen therapy (HBOT) recently to heal a soft tissue injury at the BOT caused by the radiation treatment. I've been reading quite a bit about all the uses of HBOT, and there are many. I think the tech at the hospital told us there are 14 or 15 FDA approved indications now. At any rate, I did run across an article on HBOT and tinnitus which indicates that HBOT can help. I have this one URL which has several study results:

http://www.hbot4u.com/deafness.html

This article seems pertinent, perhaps?

http://www.hbot4u.com/deafness1.html

Here is another, though I didn't spot anything on tinnitus on it, it does have someone you can e-mail for information on HBOT:

http://miraclemountain.homestead.com/HBOTManual.html

I know nothing about the legitimacy of either of these sites. It was something I found while googling. I can ask my husband to ask his HBOT doctor next week whether HBOT treats tinnitus.

Also, you might want to find an HBOT doctor there or where you live and find out for yourself whether this might help you.

P.S. It's quite expensive, and I'm sure the insurance would only cover it if tinnitus is one of the FDA approved indications for HBOT.

Good Luck,

Connie

PS... Here is something I found from the Integrative Medicine side of the house. (I don't know what acupuncture might have to offer in this area, though worth checking) :

http://www.drweil.com/u/QA/QA43374/

Just wanted to let everyone know that Michael is still in the hospital.. UGH! They were considering releasing him yesterday, but changed their minds when he still couldn't keep anything down. Today he seems to be slightly better. He hasn't thown up since I've been visiting and he walked the halls a little bit. The nurse said that there was talk of releasing him today (Saturday) but that he has a slight fever and they don't release people with a fever. He is dozing now, on and off. The nurse also said that they are going to be giving him Ativan every 6 hrs. I guess that is supposed to help with the nausea?

We discussed this with the Dr. and decided it was unneccessary since he is sleeping plenty.

He just vomitted some phlegm and now his throat and esophogus are on fire from the acids. It seems to happen around the same times each day.

The fever continues to climb and he is reporting slight swollen glands under each arm.

He has so much phelgm it really is out of control.

The ear ringing is down a little today, to maybe a 6, so there's hope still that it may resolve.

He has been resting a lot, and gets tingly hands and feet from being in bed so much.

I of course, am concerned about blood clots, and the bed sores, etc.

His lips are reddish brown and chapped. We try to keep them moistened but he is constantly wipping from all the spittle.

We are using an aloe based gel on the burn areas which have really started to be very obvious.

The skin has errupted in a couple of blister areas and even just me lightly touching it with the gel is painful.

He is taking a little more nutrition today (about 3 or 4 cans so far) but continues to loose weight. Down another pound or two today.

Mouth pain is about a 6 or 7, with a few sores in his mouth and on his tounge. He is taking NOTHING by mouth, and hates even swishing bicarb/salt water.

Taste buds are gone, with everything tasting rancid and salty he says.

We've tried the magic mouthwash a couple of times, but he doesn't like the numb sensation, plus it's milky and creamy and contributes to more phelgm.

What aggrevates him more is that he can't speak, so he has to try to get us to understand his sign gestures (a couple of them I got right away:).

We'll see how he does overnight, and I'll post more in an update tomorrow.

- Seth

Seth,
I know things are tough right now but Michael and you will get through this. Just the littlest improvement is an improvement. Is Michael using a suction machine to help with the phlem? I know I had this in the hospital and this helped. I also had a huge sore on the side of my lip/mouth theat probably was the size of my thumbnail. I would hold a damp cloth to this sore to help.

While I couldn't talk I had to write down what I wanted. This was hard at times because I was so exhausted. Is there someone staying with Michael all the time to help convey his needs?

Be strong for Michael and we will be strong for you. your both will be in my prayers tonight.
Love
Terry

Seth, so sorry this has gotten so rough for both of you. Hope they let Michael out of the hospital soon. Amy

ice on lip sores helps too. Boy, I have definitely been where Michael is and although I get frsutrated about how slowly I'm healing, rememebring when I felt like that reminds me how much I have healed! Michael will heal too.

Another thing for the dry lips and lip scab he might want to try--and it will also help with any sores just inside the list is Carafate--something used for stomach ulcers--swab it on throughout the day to keep then lip sore coated and it will coat it, dry it out, and protect it as he constatnly wipes his mouth ebcause of phlegm.

I was giggling when you said you underdstood some of Michael's hand gestures right away--I have a mind in the gutter sometimes... :rolleyes:

post script--Gail, I was really interested by this : "many patients had long-term disabilities that greatly reduced their enjoyment of life and they would have preferred a less-drastic treatment even if it somewhat reduced their chance of cure (or control)." because it somewhat contradicts a paper I read (though now I can't recall where), though that paper may have been a survey of patients in treatment or about to start treatment, not long term survivors. But also this seems like it contradicts a LOT of data on the psychology of happiness and overall life satisfaction (which I'm very interested in) which shows that even people with severe disabilities generally return to their prior-to-disability set point of life satisfaction (which for the average person is genreally on the satisfied end) witthin a few years of the onset of the disability.

I would think just kind of logically that if the disability goes along with a good thing, like surviving cancer, it would be even more likely that people would return to being satisfied with their life overall.

So anyway, just because of that, I'd be interested in hunting down that paper if you can rememebr the cite. Maybe you could email me? I know it's kind of a sidetrack here....

Hi Nelie --

Will look up citation and get to you -- it was all cancer survivors, not only HNC. However, note on OCF web site ("Support" section) that HNC survivors accounted for 20% of cancer-related suicides while only 4% of cancer patients -- this in Sweden, I believe. Lots of data on depression in post-treatment cancer patients as well, especially those who can no longer function as before.

Thus the current goal of trying to reduce long-term disabling side effects while not compromising on cancer control -- just look at how the treatment for breast cancer as evolved -- from radical mastectomies which scraped down to rib cage to current lumpectomies, now coupled with DNA tests to see if chemo is needed, also reduction in number of lymph nodes removed -- all based on studies which showed no significant loss of disease control.

Gail

Hi Seth! My dad's neck erupted in the 5th week. They gave him Silvidine cream. They use that on burn victims-my dad said that it was very soothing despite rubbing it in seeping, open wounds. Also, we bought him several super cool tank tops so his shirts wouldn't rub on the areas. The GOOD NEWS IS that his neck skin 100% on one side and about 95% on the side of the tonsil with Cancer. It heals so fast we can't believe it!
You can also massage his legs and look on line for in be range of motion excercises-he is walking, which is good. Keep truckin', this must be so hard on you. I am so sorry.