Tuesday, August 10, 2004

Tasting Spree

Sunday I returned to the world of people who put things into their mouths and swallow them. It is proving so difficult I wonder if I have forgotten how. Most of the time whatever I'm trying to drink goes down the wrong way. But at least I'm getting a few sips in.

After I made up my mind to try to force myself to swallow and I was able to drink a little water, I went around the frig and freezer tasting things and seeing what I could tolerate. Nothing tastes very good. It was encouraging to be able to swallow at all.

Orange juice (watered down and sweetened) just tasted acidic. Tea was blah. Pureed cantaloupe was slightly painful. Chicken broth tasted too fatty but it was soothing.

A half teaspoon of ice cream tasted good, but I cannot live on that because I'm allergic to milk. Have to find some soybean based ice cream, I guess.

Solid things still taste awful.

I was surprised by how good one thing I tried tasted when it was in the front of my mouth and then how badly it tasted when it was in the back of my mouth.

Sunday a man at Mass who had radiation for cancer in his throat area told me that four years later his salivary glands aren't working right. He always sucks on a cherry pit or sugar free candy to keep the saliva going, but it all shuts down at night.

From what I read last week, a lot of times the salivary glands don't come back. I remember the doctors telling me "they should recover." And I would think to myself, "should" is a kind of a weasel word.

I have been corresponding via email with Cordelia (AKA Carole Newsom-Smith), who helped her friend Erica Bressler during the last year of her life as she was being treated for cancer. Cordelia and Erica knew each other from the Renaissance Pleasure Faire. I mentioned a long time ago in one of these blogs that Erica was an tech writer on a contract and couldn't keep her job after she started treatment. She had no insurance. I had met her about a year ago. After my diagnosis, I called her to find she was in hospice and about to die. That shocked and scared me, I tell you.

Cordelia is executor of Erica's estate. Because Erica was a pack rat, Cordelia is in the throes of trying to dispose of 20 shrink wrapped 4 x 4 pallets of stuff that Erica had in storage when she died. This is just what is remaining from many many other things Cordelia has already had to deal with, sell, distribute, and dispose of. What a burden.

In one email, Cordelia had told me that Erica could always tolerate miso soup (Japanese soup made with fermented soybean paste called miso) and green tea, and Cordelia offered to bring me some after work. I wrote her yesterday afternoon to tell her I was ready to take her up on her offer.

Old friend Pradeep Kumar who used to work in the Trusted Solaris group with me had previously arranged to come by for a short visit at around 6. Then Cordelia sent an email saying she was about to come by with some miso soup.

Liberty and I had just gotten back from the grocery store where I filled up a cart of things to try in a continuation of my tasting spree.

Pradeep, Cordelia and I sat in the kitchen and talked for about three hours. I sipped some lemonade tea, green tea, and miso soup all that time, probably swallowing a total of only 1/2 cup of liquid. LIberty came in at one point after Pradeep had gone, and he told me later that he was going to say something joking like, "Mom, you look pretty tired. I'm going to have to tell your friend to go home now." And he told me I could have told them I was tired. Next time, I guess. I enjoyed having them there with me, but if I get that tired again have to be more frank next time and say, "I'm sorry, but I'm feeling very tired and I have to rest."

Don't let this discourage anyone of you who might want to visit. Just realize I don't have the energy yet that I used to have for socializing. I might look better than I feel.

Affectionately, Roseanne
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