Thursday, August 19, 2004

Eating Again With the Help of Spices

I started really eating again this week. I started out drinking broths from Trader Joes. And then I made myself some vegetable soup, which I pureed in the blender. I even cooked a sweet potato, blended it in its cooking water, and drank that. It was delicious. Then last night I had toast, actual solid food. I had beets and macaroni and cheese for lunch today. I haven't had any tube feedings for days. Whew!

A lot of my discomfort has gone away. Since I'm not having the bad indigestion I always got from the tube feeding, Liberty hears me whimpering a lot less. Actually, my whimpering has just about gone away.

(Liberty's whimpering has increased, because he ended his family leave by returning to work on Monday, but that's another story.)

A lot of discomfort in my throat and mouth was due to dryness, because I couldn't swallow. Now I'm drinking water or echinacea tea or some other liquid almost constantly. I think I must have been expectorating (how's that for a 50 cent word for spitting?) so much because of the dryness, and now I'm not expectorating hardly at all. I went to the grocery store and came home Monday night and told Liberty triumphantly that in all the time in the grocery store I hadn't spit once. What a milestone!

The reduction in expectorating might also be due to hot spices I've been putting in my food. I have been sucking on ginger candy, and I spiced up my home cooked soups with cayenne pepper, garlic, and lots of grated fresh ginger after I read on the Internet several articles about the benefits of these foods, cayenne in particular. Studies have proven that it helps older people who are having trouble eating get their food down better. And capsaicin, the burning substance in chilis, reduces mucous and is helpful for people with sores from radiation and chemotherapy. Here is part of one article that talks about how it helps mouth sores:

The Healing Powers of Hot Peppers

In what often must seem like a wicked twist of fate, most patients who receive radiation or chemotherapy to the head and neck develop serious oral lesions. The treatment necessary to make them better, at least initially, can make them feel worse. These sores of the mouth, or oral mucositis, are not only painful but "also can limit adequate nutritional intake and can decrease willingness of patients to continue treatment," according to the study Capsaicin for the Treatment of Oral Mucositis Pain, which appeared in the bulletin Principles & Practices of Oncology in January 1995.

The use of capsaicin as a reliever of mouth pain has a long history. A sixteenth century Franciscan monk living in Mexico found that the Aztec Indians used chiles as a "remedy to an injury to the tongue; biting of the tongue; laceration of the tongue." . . . Whether they knew it or not, the Aztecs were on to something big.

Fast-forward to the twentieth century. In 1994, Yale University Ph.D. candidate Tracy Karrer had the idea to study the effects of capsaicin on desensitization of the mouth in relation to taste, touch and temperature in human beings. Working in conjunction with Yale professor Linda Bartoshuk Ph.D., they tested how much capsaicin it would take to desensitize the mouth mucous membranes. . . . .

Bartoshuk became interested in capsaicin more than twenty years ago. Until recently, she says, they didn't do any trials with capsaicin out of fear they would damage people. But the desire to help those who suffered from oral mucositis pain was greater than the fear, and a clinical trial was set up. "Our first test subject was a nurse with cancer who suffered from mouth lesions she developed during chemotherapy. When I first applied the capsaicin, my hand was shaking, and so was her tongue." The nurse and many other test subjects proved that through desensitization of the mucous membrane, capsaicin has provided a substantial amount of pain relief for oral pain sufferers.

Yale medical student Wolffe Nadoolman made a good idea even better by suggesting that the capsaicin be packaged within a candy to make it more palatable. What they came up with was a taffy because it is soft and easily ingested without additional pain. While all of this information is very promising, Bartoshuk cautioned that many more in-depth clinical studies must be done before the FDA can approve the "cancer candy" as a treatment. "There are many areas of pain that I believe capsaicin can effectively help treat, from burn victims, to children who have suffered side effects from radiation or chemotherapy. We would like to develop products such as chile gummy bears or capsaicin popsicles in a suitable strength for kids."

I contacted Professor Bartoshuk (the researcher in the above article) by email at Yale today to tell her that there is a lot of candy with capsaicin available commercially already, in Mexican stores. I wrote:

I've seen lots of candies with chilis in a Mexican grocery store called Northside Supermercado in downtown San Jose, where I live. I stood at the candy rack amazed one day reading the lists of ingredients. This leads me to believe that these kinds of candies must be common in Mexico.

Instead of going through the process of setting up the manufacturing of cayenne taffee commercially, perhaps those interested can set up an import or local purchase of these candies, which might be the easier way to go.

I might even be working soon on a very short contract.

Judy Keene, the publications manager from a Sun vendor who I worked with a lot in my last full-time job called me this week. I immediately started apologizing because I had not thanked her for a charming package of things she wrapped to make me laugh that I had received from her last week. There were a spinning top, Playdough animals, goofy socks, a whole bunch of thoughtful surprises. She called me because she had been asking other people I used to work with at Sun's Network Storage group if they were free to do a short contract for her company. Apparently, the writers all suggested me, but she told them that she hadn't called me because she knew I was still recuperating (she is on the email list). One writer was so insistent that she try me anyway, she gave me a call. At first I thought I couldn't handle it, partly because I thought that part time work would immediately disqualify me from disability payments. But after calling 10 times, I finally got through to the disability office, and I was told that I could work part time and they would just deduct whatever I made from the amount they send me.

I called Judy and left a message yesterday. She hasn't called back yet. Maybe she found somebody else. We'll have to see.

The disability office is going to send me a form, which I'll bring to Dr. Wu next week, to ask her to fill out to extend my disability, if she doesn't think I'm ready for working full time yet.

Parting thought: You know what else is cool? If I need a Tums, I can suck on it and swallow it, instead of grinding it up, mixing it with water, and injecting it into my stomach tube. Thank God for everything, but especially this little favor.

And I'm going to a restaurant for the first time (not counting the take-out miso soup I bought from Okayama restaurant in nearby Japantown a few nights ago). Because my friend Nanci Kim is leaving next week for Korea to teach at Seoul University, I'm taking her to a Thai restaurant Friday night. At the very least, I'm sure I'll be able to eat the soup.

I'm so excited!

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

Monday, August 09, 2004

Photos of My Treatment and Cast of Supporting Characters

Photos of my treatment and some of the wonderful people who have supported me are at: Treatment and Cast of Characters. I have a number of additional rolls of film to develop, so check back next week if your photo isn't posted yet.

Friday, August 06, 2004

Day 67: Status Report

Hello all,

I had to reset my expectations for my recovery ever since my radiation treatment ended July 26. It's all a lot slower than I hoped. I'm sure the Lord is working on my patience with this part of the process.

Often my chemo doctor has told me it would take up to a month for me to eat normally again. She thought I'd be eating some within a week, more within two weeks, etc.

But in these 11 days after treatment ended, I have been very disappointed that I have had little or no improvement in my ability to swallow or healing of mouth and throat pain. The good news is that by the grace of God I have gradually gained some peace and acceptance about it. Besides, as a Christian I should not be complaining about God's will for me.

Yesterday (Thursday) I talked to a dietitian about my troubles with the tube feeding. I never have adjusted to it, and it is very uncomfortable. My eagerness to eat normally again is mostly from my desire to be free of the tube feeding. Sometimes I'm just tempted to stop doing it entirely, but it's my only source of liquid except for IV hydration three times a week, and I think my healing would also be severely hindered by the absence of the vitamins and minerals the formula provides.

She told me that there aren't any other choices left for changing the formula, and that perhaps I should consult a gastroenterologist. I have a weird condition where my stomach doesn't empty for hours after I fill it, and I get bad indigestion and burning in my throat and I'll stop there with the details (for a change). I thought to ask the dietician if she has other patients who have throat radiation and how long it takes for them to get off the tube feeding. She told me that many of her patients who have similar treatment take six to eight months to return to normal eating

I cried when I heard that.

I was planning on starting to look for work again within the month.

If the recovery is really going to be that slow, I'd better make an adjustment to my work plans, to all my plans actually.

Maybe I should try to find a writing or editing job where I can work from home and not have to talk much, because my speech is interrupted every few minutes by my having to hawk and spit. So much for interviewing people on the job. "Hold that thought, I have to spit into my emetic basin. . . . Now, what were you saying?" Being on a job site would be a bit touchy. Someone walks into my office during lunch time and sees me hooked up to a feeding bad and a pump . . ..

I have a free gig writing restaurant reviews for the quarterly San Jose Northside Neighborhood Association newsletter. The first review, which I wrote three months ago, is being published this month. It's about the strangest little place called Birrieria Jalisco, which features goat stew and beer.

How ironic, restaurant reviews written by someone who cannot eat.

The next two reviews can be from memory of two more of the Mexican restaurants around me.

Got to work on my freelance stuff some more I guess.