Kathy

As a follow up to my post, here is a link to a discussion of how dying from oral cancer in a hospice does not have to be horrible or painful Hospice
It's by a certified hospice and pallative care nurse who has spent over 28 years in hospice care and had dealt with oral cancer patients. Significantly she states
[quote]In caring for hospice patients for 25 years, I never saw any patient with oral cancer that was not kept comfortable. [/quote] Also look at the OCF main web page
OCF hospice
Best wishes for you and your family in this difficult time
Charm

Thank you all for your very kind words of support, your honesty, and encouragement. i really appreciate all of it.

Mom wants to pursue tretment, even tho the docs (Emory Hospital in Atlanta) agree that there's about a 50% chance she won't survive the treatment. Rather, they'll be forced to stop before it is curative. 50/50 is a nasty number to hear, really ties your hands. But she's moving forward. They can't tell us how likely a recurrence will be. She'll receive PeT scans every 3 months for a year, assuming she makes it through the TX.

She had her remaining natural teeth extracted yesterday and will be fitted for the mask (simulation?) tomorrow. Really dreading that. She's managed to gain about 4 pounds in 10 days. Not great, but moving in the right direction, at least.

She's in a rehab center right now but is moving toa ssisted living (with Medicare home health nurses to visit daily) this weekend. Radiation and Carbo-Taxol begin the 23rd. They need time for her mouth to heal from the extractions and time for the computer to map her face, I guess. Don't know why that takes so long.

So many uncertainties. I wish we had more family to help with the decisions and the assistance.

Thanks again for your thoughts and prayers, I sincerely hope you all are doing well in your recovery and cures!

Kathy

Please prepare her for the fitting as it is quite confining. The more she understands about what it may feel like the better her response will be. I was totally unprepared (no advance discussion by my docs) and when they clamped me down so tight that the mask left marks in my skin (went away after appx 20 mins) my heart started pounding. By the second Tx I got used to it but some have posted that they needed a mild sedative before each rad session. Anyway I wish her well and please keep us posted. The more we know the more we can help.

Your mom is a trooper and thats great - and yes of she's not okay with being restrained - maybe an Ativan before hand to relax her. Good luck!

Hi Kathy,

Good for your mom for being such a fighter! I wish you all the best.

As for the mask fitting and use during radiation, my mom actually had no problem with it. It does seem it can be very confining and if you are not comfortable with that it can be daunting. But she did fine with it personally. Everyone is different though... preparing her for it upfront is definitely a good idea, as well as being armed with an Ativan, or half if she's real sensitive to it like my mom was.

Kathy

Best wishes for your Mom. Since it's clear from your post that the mask has already been fitted by this time today, I won't comment on it. Since she has opted for radiation TX, I would insist that her doctors immediately do a TSH blood test right now to see what her normal levels are. Please don't take no for an answer or the doctors' misinformed opinion that it doesn't matter, since subsequent blood tests can detect a thyroid problems. It is simply not true since the lab tests ranges are so large and also so 20th century and not acceptable to any savvy endocrinologist. It is a very easy test and she will be having a lot of blood work done anyway. What you want to be able to do, is after your Mom survives this (and she very well may), is to have her be able to have her own personal thryoid levels back. Trust me on this issue, I have personal experience on how terrible life can be without the right thryoid levels even though the old 20th century lab ranges say it's acceptable. Thank God I found an endocrinologist who graduated in the 21st Century who could help me.
Charm