Hi Seth --

I am my husband Barry's caregiver and he is about 3 days ahead of Michael re treatment (at Johns Hopkins). Here are some tips we use to keep organized:

1) a sheet (by time) for what has to be done each day -- he has "radiation only" days and "chemoradiation days" -- he is getting amiphostine on radiation only days so (for example) has to start drinking 24 oz. water and take a Zofran by 9:30 am to be ready for the injections at 11:00 am (11:30 radiation). We have this all down on a list so he can check it, and whoever is taking him to Hopkins (usually me, but his daughter once a week) is responsible for cross-checking everything. We know as he gets more side-effects he will be more apt to make mistakes, so is checked on throughout.

2) We have (on the fridge) a checklist with boxes for each day, listing things he needs to do to take care of mouth and skin -- e.g. fluoride trays once a day, Thera-bite 7x a day, Biafine cream on neck 3x a day, etc. He checks these off and I also watch him, and check off. Several times I have had to remind or even push for him to do something as he's forgotten or is tired or queasy, and I know this will only get worse as the treatment progresses.

Right now he has no problems eating and drinking but I can see that soon we will have to have a "diary" of calories and hydration. Especially if he has to use the peg.

Now as to eating, on amiphostine days he does have a lingering queasy feeling and some foods do not appeal to him. Things that have tasted good to him -- luckily now he still has all his taste, it's going to be a lot harder when that goes -- are sweetened ginger tea (get at health food store), various fruit jellos, lime-flavored sparkling water, Cozy Shack rice pudding with raisins (mmmm), four-cheese mashed potatoes (comes as dry mix, add hot water -- not "gourmet" but very tasty and also, very smooth), French vanilla ice cream, and chocolate pudding. Quite an eclectic mix but he ate them and that's what's important! He did NOT like the way Boost or any of the other prepared liquid foods "sat" on his stomach and is off them for the moment -- they are very high in fats. Barry had his gall bladder out two years ago and too much fat in a food causes some problems, which we hope the recently-prescribed Reglan will stop this (it seems to). It keeps things moving through and helps avoid that bloated feeling.

If you have problems over the weekend call the oncologist on call at Sloan as they may want you to come in.

Good luck, be strong,both of you...
Gail