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.

Wednesday, July 21, 2004

Day 51: Death Shock

I went into an emotional tail spin this weekend, and it might help to write about it here. The precipitants of my tail spin were news from Bruce Lieberman, from Annette Davide, recollections about the death of Annette's stepdaughter, bad old memories, and loneliness on a Sunday afternoon.

I hadn't heard from two people in a while, and their communications with me are mixed into what I want to say here.

First person I hadn't heard from was Bruce Lieberman, friend and husband to my friend, Marlene. Bruce didn't write after hearing my cancer news. I knew his mother had died about 15 years ago from cancer, and I suspected that his silence might have been related to that loss. I found out more this weekend.

Another person who I hadn't heard from is my friend Annette. Last I had heard from her, she mentioned that her daughter's father in law, Jim Sullivan, was suddenly very sick. Annette asked me, oddly enough, if I had been saying any "bad" prayers for him. She reminded me about how I had told her I felt bad for the wife Truda when Jim sold their trailer home after he recently lost his job, since she had never until this past year lived in a home they'd owned in their entire married life. ( I hope I don't have to tell anyone reading this that nothing would motivate me to say "bad" prayers about anybody.) So there I was armed with that little bit of information about Jim's sudden illness and that weird question from Annette until more news came in this weekend that blew me away.

We didn't dwell on Jim's illness all that much when we had last talked. Annette has bad troubles of her own, and the conversation moved to how her big toe had been removed, and how poorly she was recovering from cellulitis, which had caused both her legs to swell and turn red.

I learned more about Bruce's mother's last illness when Bruce wrote me back from work at Microsoft on Saturday. Isn't everyone's life odd these days? Bruce's wife and daughter are in the south, with the daughter at Space Camp, and the wife is celebrating their 12th wedding anniversary going on a tour of Graceland without Bruce, who couldn't get away, and who has a travel phobia these days anyways. If you catch my meaning, even if he could get away, he can't. Bruce wrote me he admired my courage for going through the treatment. The gorey things I describe, I guess, are the reasons why Bruce's mother decided not to be treated for pancreatic cancer. No chemo, no radiation, nothing, he wrote, she just died -- at 60. If I refused treatment, I would probably die by 60 also, since my 59th birthday is coming up Oct. 3. I wish it was otherwise, but my own outcome is not all certain yet. Bruce seeems to be unhappy that his mother gave up seemingly without trying, not fighting back with treatment. Just dying.

I was sorely tempted to skip the treatment when the doctor told me what it would be like, but as I wrote back to Bruce, I felt that God wants me to obey the doctors, so I have.

Bruce told me that there is a Jewish gene, which, according to his colorful explanation, does not cause the cancer but manipulates the genes around it so they cause the cancer (sounds like something from a comedy routine at a Catskills resort, but still isn't funny). Bruce said the gene is hereditary, and that he has a 50% chance of getting pancreatic cancer himself and dying like his mother at 60. Well that's a sobering thought for him to have to live with.

Over the weekend I got it in my head to try to connect with Annette again so I left a few messages on her answering machine. She has moved all the way down to Newman CA as part of the general upheaval in her life. It had been over a month since we last talked. Sunday afternoon was dragging into evening when Annette called. As usual much had been going on. Annette had gotten a message from her daughter telling her that I had called and she was squeezing in a quick call before bed. She wasn't at home. Annette was staying with friends in Milpitas because she had an early doctor's appointment the next morning. And it takes over an hour and a half to commute to the doctor from where she lives now.

Almost casually, I heard her say that one of the reasons she had been so busy lately is that Jim, her daughter's father in law, had died. They'd held a "service" at my former church in Milpitas, and I hadn't heard a word about it. His wife will be taking his ashes back to Massachusetts so they can be buried there. He had been finally diagnosed with pancreatic cancer on June 30, and passed away 11 days later. "Your stepdaughter died from pancreatic cancer too, didn't she?" "Yes." That was fast too, her step daughter Betsy's death.

Jim dead like Betsy? Truda suddenly without a husband or a home? Big Jim now reduced to a box of ashes. Too much to handle.

My emotions were as if I was watching a horror movie where a nice, big, man over 200 pounds was disolved in a whirlwind. At the end of the blur of motion, only ashes were left of him, in a little box.

I was so upset I started retching and crying when Annette ended the phone call. I know it's not only Jim Sullivan's death that got me that way. Fears of my own death are mixed in there, must be. But there is another story here.

Psychology says that people get clusters of emotions centered around traumatic events. When someone reacts inordinately to a current happening, that's an indication that memories of earlier unresolved event is behind the reaction. These memories aren't just mental intellectual memories of the facts of the long ago situation. They consist of the emotions and physical reactions too. So the death of this man who I slightly knew was not the whole reason why I was retching and crying Sunday night.

I was also reexperiencing another shock earlier in my life where I was offhandedly told by my sister, "You know Grandma died?" two weeks after my beloved grandmother was buried. At the age of 15 I was in a long term care hospital recovering from surgery to straighten my spine, and nobody thought to let me know that my Grandmother had died until my sister blithely dropped it into our phone conversation. She was buried, two weeks earlier. I had no privacy in the 40 bed ward, no place to go to scream like I wanted to, and nobody to share my grief with, and that loss is still fresh and painful. Grandma dead? Buried? Nobody told me? Big over 200 pounds Grandma who I had been separated from by my mother 4 years earlier and had only seen once in that time? I remember sitting next to her on the couch the one day we'd snuck away to see her. She'd had a stoke, and her hair had gone gray. She was still big, a tall, stocky woman, but had lost a lot of weight. Now she was gone? Death, that ultimate adamant fact with which there is no bargaining or going back from had taken her away from me. And nobody bothered to let me know?

Post Script: Bruce, pancreatic cancer is fast moving and seemingly hard to treat. Maybe your mother knew that fighting with treatment would have done nothing except make her last days even more unpleasant than they would have been otherwise. I hear that Betsy's last day's were full of retching from the chemo. Maybe there was more to the decision to "just die" than we can know.

Saturday, July 17, 2004

Day 47: PostScript

Just to reassure you all, I need to tell you that everyone who sees me is surprised that I look better than they expect, after getting these graphic descriptions of burns and blood and tubes and other horrors.

For one thing, I haven't lost much of my hair. My hair was thick to start with, so it's only thinned a little. Maybe that last dose of chemo will make me bald before its effects are gone, but so far so good. And, even though I could stand to lose a lot more, living on 1000 calories a day tube feeding means I lost about 25 pounds. Besides all of that, my complexion has lost the florid look I get when I let my pale Irish skin get too much sun.

When Eowyn arrived, she said, "Auntie Roseanne, you look awesome."

Irene Holochak, my fellow student from the Institute for Leadership in Ministry, told Liberty she practically started dancing when she saw me one day she came to give me a ride, she was so relieved that I looked better than she expected.

Another person who was delighted to see how well I looked was Liberty's friend Luke, who came by with some other friends for Liberty's birthday. We all got to spend some time together. I helped them prepare their barbecue and cooked a red white and blue birthday pie even though I couldn't eat anything, and played a bit of Risk (the Lord of the Rings version) with them. Afterwards Luke wrote a sweet email to tell me how much better he felt after seeing me, because not seeing me led him to fear the worst.

I just wanted to make sure that you all have this picture too, that I'm doing better than it may seem from what you read in these blogs.

Affectionately, Roseanne

Keep in mind that I once stated that my epithet should read, "She had a penchant for hyperbole."

Day 47: I'm Back

Where to start after 29 days of silence? I stopped blogging for a number of reasons.

One reason I stopped writing was because I wanted to start sharing photos, and I was brought up short by an embarrassing day where I clogged a couple of hundred of your mailboxes with a 17MB scan.

After that little incident, I thought I'd wait until I either developed or discovered a way to automate posting a lot of photos at once as thumbnails that could be clicked through for viewing as full size photos. BTW, if anyone reading this has any hints about how to do what I just described, just send your hints right here.

With what I knew when the idea presented itself to me last month, I was facing a steep learning curve with Adobe Creative Suite. In the meantime I started exploring iPhoto on my iMac, and learning about how to put together photo books, ending up developing a fruitful but not directly related set of new skills that kept me from blogging. I did however, come up with a cute book of photos from when my daughter had been here. I have been trying to get my son to mail the photos to my daughter since she doesn't want to hear from me, but the envelope is lost in his "To Do" pile.

Today I found out that Blogger.com has some software that does the same thing I want to do automatically, so ALL I have to do is learn how to use that new program, called Flick'r. Their main offering, Picasa, for photoblogging is supported only on Windows.

Sigh, maybe I'll have to go back to Windows. My iMac monitor died last week. I don't have access to my iMac's address book BTW, so I probably don't have your address.

Facing learning a whole lot of new techniques was daunting enough to stop me dead in my tracks. Add that to the daily grind of commuting to appointments and sitting for many tedious hours having various substances dripped, injected, and beamed into my restless body, I got overwhelmed with fatigue and I guess discouragment. The gross details were accumulating faster than even I could dare to write them down. How much can you tell people about the yucky scary annoying aspects of treatment without losing your entire audience?

Maybe it's just that I lost myself as a reader the week I started my second round of chemo. The chemo doctor, Wu, decided to suspend the 5 FU fanny pack because my mouth sores had been so bad. So the second round of chemo on June 22 consisted of a day of hydration followed by cisplatin followed by more hydration. I hardly peeed at all that day. I was frightened because from what I'd read I didn't want that cisplatin hanging around in my kidneys. It has the potential to severely damage kidneys.

After 3 liters of IV fluids and a half liter of cisplatin, I'd only peeed a little bit. The nurse administered Lasix, a diueretic, to induce me to pass more fluids, but that didn't help much. So I went home bloated from the fluids.

The rest of my plumbing seemed to stop functioning too. I didn't have a bowel movement for three days. I got a painful attack of hemorrhoids.

Well, you get the idea about the proliferation of yucky details. After three days of more IV fluids with hardly any bladder action, I was scared. I had gained about 12 pounds of water weight from the fluids. You have to realize I was not eating at all, taking in about 1000 calories of tube feeding formula. When they clamped the face mask down on me in radiation, it barely fit, I was so bloated.

I don't want to try to describe all the frustrations I had trying to get this problem addressed by the doctors and nurses. So I'll cut to my current status.

I had my third dose (and hopefully last) dose of cisplatin last Tuesday. I'm peeing more this round, and with the doctors and nurses have worked out some methods for keeping my bowels moving that are adequate even though less than ideal. I haven't eaten a bite of food in two weeks, after one final day when I was able to enjoy some juiced watermelon and a little chicken soup.

Last week I developed open burns on my neck, which are healing now, since those areas will not be irradiated any more. My blood is coursing with three different types of antinausea drugs, a drug to build up my depleted hemoglobin, another drug to build up my white blood count. I'm sitting around in a chemical stew, and I don't protest any more. I pretty much just take whatever they want to give me and hang on for the ride.

I guess I really haven't stopped protesting. Here is a digression about the pitfalls of trying to buy 100% Pure Aloe Vera Gel. When the radiation nurse recommended I buy aloe vera gel to apply to my skin during the therapy, Liberty gave me a bottle he'd bought at Long's Drug Store. The label reads, "Longs ALOE VERA MOISTURIZING GEL," . . . "MADE WITH 100% PURE ALOE VERA GEL*". In spite of what the words seem to mean, the product is made not only with "100% pure" aloe vera gel, but a whole lot more ingredients, some of which when applied to a burn are painful, and not all of which are needed, for example, alcohol, and the blue and yellow coloring (that make the product a neon green).

The asterisk points you to a explanatory note "*100% Pure Aloe Vera Gel plus necessary prervatives and stabilizers." The ingredients list includes all the following: "SD Alcohol 40, Glycerin, Polysorbate-20, Carbomer, Triethalolamine, Methylparaben, Imidazolidinyl Urea, Benzophenone-4, FD&C Blue #1, DF&C Yellow #5, Fragrance."

Urea, folks is what it sounds like, made from urine. It's commoner than you would think in hand cremes. Look at the label for Eucerin, if you ever come across it.

The radiation nurse said that others have shopped around and that the aloe vera gel sold at the Palo Alto Medical Foundation pharmacy is the purest and least expensive variety around, so I went and bought some there.

At first glance, the new product seemed right. It was a clear gel this time, labeled "Fruit of the Earth Contains NO Alcohol ALOE VERA 100% GEL PURE. No Color Added." At home, under scrutiny at the bottom back of the bottom an isolated asterisk makes its first appearance: " *Plus prervatives and stabilizers to ensure potency and efficacy." The ingredients list is shorter, but the product still stings: TRIETHANOLAMINE, TOCOPHERYL ACETATE, CARBOMER 940, TETRASODIUM EDTA, DMDM HYDANTOIN, DIAZOLIDINYL UREA.

On the bottom shelf of a rack at Country Sun health food store in Palo Alto, I finally found a $7.95 bottle of maybe four ounces of actually pure actually 100% aloe vera gel, with no asterisks on the label or additives. But I remembered the big aloe vera plant I've been watering in a big pot on my back steps for three years, and so I decided to go home and cut pieces off the plant instead. Now, I can assure you that the real 100% aloe vera gel from a real plant doesn't sting at all.

The radiation doctor said that the tonsil now looks normal after the treatment. The swollen lymph node is still swollen, and the ENT doctor may decide to take it out surgically if it still hasn't gone down at the end of the XRT treatment.

My last day for radiation will be (God willing) a week from next Monday, July 29. Then I have to recover. When I am able to eat again, they'll take out the stomach tube.

Dr. Wu is blithely planning to leave in the mediport shunt for a year, "just in case."

After I get eating and excreting normally again, I'll have to see about finding work again.

Another thing that made it hard to write was the impossibility of giving adequate credit and thanks to all the good people who came and visited and drove me places, shopped for me, called, wrote. I'll try to retrieve some anecdotes, because all of you have been sweet and interesting and diverting to interact with and you kept me from reaching the absolute deepest darkest funk of boredom, even though I hover around the edge of it from time to time.

People with severe problems of their own have apologized for not helping. One many decided he couldn't drive because his son has an upcoming heart procedure. And to my shock,Jean Reed McCauley had to withdraw her offer to drive because her young (under 40), fit, thin, husband had a heart attack, and she has to take care of him.

Anne Alexander, a fellow writer from Sun's NWS group, apologized too, in spite of her own heavy burden of fibromyalgia and chronic fatigue syndrome. My son,
Liberty, was recently given the same diagnosis as Anne.

Liberty started his month of family leave from CISCO at the start of July, and now is taking me to almost all of my appointments.

Last week we had the pleasure of having my nieces Eowyn, 35, and Susan, 27, from Dedham and Worcester MA and Eo's son Thomas almost 2. Thomas was here for a week last summer too and seemed to feel right at home again.

Thomas does sound effects. I'm always hawking and clearing the thick spittle from my throat because as you may remember, I cannot swallow it. One day when Eo was driving me to IV fluids, we noticed that Thomas was sitting in his car seat making the same kind of sounds I do. My writing skills fail me when I try to figure out how to render the sound on the page. Probably more than one of you is saying to yourself here, that is all for the best.



Friday, June 18, 2004

Day 18: White Light Swirling, Living Without a Revocable Trust, and More

The day before yesterday, Brad Wetmore, former Trusted Solaris engineer, drove me to radiation. Brad is about 6' 7" so it must look funny to see the both of us stand side by side.

Former Sun Network Storage (NWS) co-worker, Tom Brodie, drove me to my radiation appointment yesterday. Both Brad and Tom can vouch that I was not as bad as I described in my emails. The difference is the morphine prescription the doctor recently wrote for me to take as needed. Hooray for morphine. I only take it once or twice a day and at half the prescribed maximum, but it helps give me a break. I also probably feel better because it's been almost 2 weeks since the last chemo round was over.

For those who haven't heard, scientific research has found that people taking morphine for pain management don't get addicted and are generally safe to drive. The ones who take morphine to feel better than normal are the ones who get addicted or addled enough to not be able to drive.

I hope the morphine helps with whatever the second round of chemo that I start on Tuesday next week will bring me in the way of symptoms.

The chemo doctor is thinking of skipping or shortening the five days of 5FU next time because of my symptoms. She'll decide on Monday when she sees me. She'll still give the day of cisplatin in any case, The rationale is that the chemo softens up the tumor to make it respond better to the radiation. Makes sense. I'm also getting the picture that the tonsil cancer has been slowly growing for years. Those slow-growing tumors are harder to zap that the fast growing ones.

The radiation doctor looked down my throat and said that the tonsil has shrunk. The swollen lymph node is still about the same in my neck.

Anne Alexander another former NWS writer, drove me a couple of weeks ago when I was wearing a 5FU chemo fanny pack, and I was just beat. The two of us were just beat, actually, on a hot Friday afternoon in rush hour traffic.

Thanks to Brad, Tom and Anne. And thanks to all of you. Even if I don't specifically mention your names, I am very grateful for all the kind acts you have done.

Sharon Bradshaw, who is one of the many people that would classify themselves as spiritual but not religious, wrote this:

As I was driving in to work, I had this vision of you and white light
swirling around and through you. This bright light is filled with love,
resolve, peace, and healing.

Nice!

My money making is limited these days to whatever State Disability will give me. I got my first check yesterday, which was a relief, since I wasn't positive I would qualify.

Today, my son and I went downtown to James Quillian's law office to investigate a living trust. He talked us out of getting one. That's a goodwill-building-thing-to-do, Liberty said. The lawyer didn't get any money from us this time, but if either of us need a lawyer in the future, we would definitely think of him.

The lawyer said that probate is not required for estates as small as mine. He told us a few things to do that will achieve what I was trying to do with the living trust. 1. Sign a joint tenancy deed without registering it. Liberty could then register it if I die. 2. Go to the bank and set up the accounts so they automatically are transferred to my son's name after death. My 401K is already assigned to my children. 3. Set up a rollover will for all other assets.

This is just in case I die for any reason.

The Letitia building where the law firm is housed was built in 1890 and restored after falling to ruins during the depression. It is an elegant relic, with 14 foot windows and lots of fine architectural features like moldings and a stunning atrium waiting room. Haven't seen much by way of elegant buildings around here, like I did in Boston when I was growing up. Everything seems better ordered in such a gracious setting. Letitia, the woman for whom the building was named, was the wife of a San Jose councilman, C.T. Ryland, who build the building, and the daughter of Peter Burnett, the first American civil governor of California.

Walking downtown was for me like a former smoker entering a bar for the first time. I used to eat out when I went downtown. "There's Bella Mia," I pointed out to Liberty, "A bunch of us piled onto the trolley and went there a few times for lunch from the TSOL group offices on No. 1st Street." The smells of food reminded me that I'm at least temporarily a reformed eater. I've lost close to 20 pounds, which is just about the only thing positive I can say about this whole experience. Oh that and the help of you all.

Thursday, June 17, 2004

Day 17: See For Yourself How to Get Waffle Face, and Other Discoveries

This photo illustrates how I get waffle face at the Palo Alto Medical Foundation radiation treatment center.



This photo shows the Trusted Solaris group lunch at my place, with AJ and the women who are grilling him about his marriage intentions along with the other men who are glad the spotlight isn't being turned on them.


L to R: Jan Parcel, Hai May Chou, Ashish Joshi, Mark Wedel, Krishna Yenduri, Ric Aleshire, Thuy Fettig.

Yesterday I got the following two answers to my question about How Democrats Were Hunted:

-------- From John Stearns former coworker and manager in the Trusted Solaris group (originally from Auburn, MA) ----------

Hi Roseanne,

. . .

Regarding hunting for Democrats, I believe the story is that the Republicans in the Texas legislature tried to force an early re-districting in Texas. I believe that re-districting is only supposed to take place every ten years. Because the Texas Rs are in the majority, they are able to force a vote on it, but they need a quorum for the vote. In protest and to prevent the vote, the Ds chose not to show up. This has gone on for a while and some of the Ds left the state. The US Attorney John Ashcroft who should be spending scarce dollars on fighting terrorism, put federal agents and planes at the disposal of the Texas Rs. I may not have the story quite right but I believe that's what they were referring to.

Take care,

--John


------------------- From Jerry Johnson from Minneapolis ---------------------

Roseanne,

I'm not 100 % sure about this, but I think the "Democrat hunting" happened last year in Texas (where else?). If I remember correctly, the Republicans were using their majority in the legislature to do a little gerrymandering. To stop the process, the Democrats left town. I think the Texas Rangers were actually called out to look for them. It turned out that the Democrats had fled across the border into Oklahoma, so the Rangers didn't have jurisdiction and couldn't bring them back. Is this a great country or what?

Jerry

---------------------------------------

I met Jerry Johnson, whose very name evokes the Minnesota Scandinavian mystique, the oddest way I've met anyone. I was in Minneapolis trying to take care of things for my mother after she had a stroke, I think in 1995, and I was getting a run around by the Social Security Administration. I met Jerry on the phone at SSA,. He took care of whatever bureaucratic SNAFU was holding up my mom's monthly allowance for me. And we started to be phone friends. We only met in person once (I think) when I was visiting Minneapolis a later time. He showed me his very tastefully decorated house in South Minneapolis, with some of his nature photographs from his extensive hikes in wilderness areas around the United States framed on the walls.

As I remember he got the option of early retirement soon after, at about the age of 50, and he has been living frugally but happily unemployed since then. He has a group of friends that met at a coffee shop in St. Paul, and I'm impressed to hear that when a woman in their group got cancer, they helped her out any way they could. Her husband couldn't do it all. They even did yard work. In Minnesota, that's a big deal. In CA almost everyone has a gardener. In Minnesota, almost everyone has a big grass lawn that needs weekly mowing.

This is all very kind of them, I think.

Wednesday, June 16, 2004

Day 16: Marriage Evasion, Hunting Democrats, Fixing Broken Systems and Hearts

Yesterday I got a ride from Ashish Joshi (AJ), an Indian engineer I used to work with. AJ is also an actor in Indian productions in the Bay Area and a classically trained singer. I think he'd agree with my assessment that he's a non-practicing Hindu. He has taught me some interesting things about Hindu practices, including the springtime feast of Diwali, when people celebrate by spraying each other with colored water.

For years I would mercilessly tease Ashish about his marital status. I observed that most of the Indian engineers would take a month off once a year to go home and visit. Usually a bachelor would come back married. Ashish was one of only a few who didn't fit the pattern. His mother kept trying to arrange a marriage for him, but he kept evading all attempts. I used to ask him to promise to invite me to his wedding. He happily promised--since he had no plans to get married at all.

Last time I saw him, when some of the Trusted Solaris development group came to my house for lunch last month after I sprang the news, I continued to haze him.
The other women (European, Chinese, Vietnamese) at the lunch table speculated that AJ may be still unmarried because he doesn't have a chance to meet women. I said, "He's an actor and a singer, and I'm sure he is fighting the women off." He didn't disagree. He did say that his mother has finally given up. The rest of the women speculated some more about whether there was something about all of us that turned him off the idea of women in general, but he didn't reply to that loaded question either.

When he said he'd give me a ride, I said I wouldn't tease him any more. Well, this is the one more time I'll tease him.

We sat pretty quietly in the car listening to All Things Considered on NPR, and laughing together as the same things struck us funny. One was something I hadn't heard about before where some politician was accused of inappropriately using planes to search for Democrats who weren't showing up for votes.

Can someone enlighten me? I don't follow news or watch TV so I'm out of the loop. How could you go about searching for Democrats by plane? Do they have symbols on the tops of their heads, or what?

AJ commented dryly about the humor value of politics.

I feel much better today because the radiation doctor prescribed morphine. One dose last night gave me a lot of relief, and I feel renewed. I handled the tube feeding better last night, thanks to the morphine and another antinausea drug.

Vitamin E helps with the mouth and lip sores. Several people suggested it, and vitamin A. The radiation doctor agreed I could apply them topically even though they don't want me taking antioxidants during chemo.

Get this: to my shock I found out that the doctors and dietitians fully accept that patients are getting all those unnecessary chemicals (artificial sweeteners and
flavorings) in their tube feedings. One woman who is a nurse wrote me and said that her patients get the same thing. So it wasn't a mistake. It's accepted practice. My chemo doctor was not happy that I was upset. I was surprised that she found it acceptable.

The dietitian called me and assured me that the product she gave me doesn't have any artificial sweeteners. In a sarcastic tone of voice I read the names of the sweeteners off the label to her. I told her that the nestleclinicalnutrition website said that the ready to hang version has different ingredients and that I'm assuming that doesn't include flavorings and sweeteners.

She checked and called me back and said no, the formulas are the same. I meanwhile got an email answer from nestle saying the opposite, that the ready to hang version had no flavorings. Where's the truth here? She's still looking into it.

The dietitian also aid they don't use the ready to hang bags for some reason that didn't make sense to me.

But they did find me some unflavored stuff that doesn't have the offensive ingredients and they delivered it today.

Jan reminded me what I know but wish I had the patience to practice, this is not the time to fix the world's broken systems.

Today's a better day.

Except that after an exchange of hurtful emails, my daughter disowned me yesterday. Time for a lot of prayer for healing of this broken relationship.

Everyone, if I'm hard on you, please forgive me. I am trying to keep my Irish/Hungarian temper and not relapse into anger and intolerance when I'm in pain, and my biggest fear is that I will lash out and lose the support I need. I will do everything I can to not offend anyone, but if I do, please forgive me.

Remember the Lord's Prayer. In the middle it says that we only are forgiven as much as we forgive.

Monday, June 14, 2004

Day 14: Not Being Able to Talk or Eat

Not being able to communicate has manifested itself in a way I didn't expect. I haven't lost my voice. This excerpt I sent in an email just now to Ashish Joshi (verifying that he will take me to radiation tomorrow) illustrates the problem:

I left you a voice message, which you may not be able to understand.

My lips and mouth are full of sores. My spit is thick and ropey, and I cannot swallow it. Spit pools in my mouth until I pull it out. I cannot close my mouth, partly because the sores on the side stick to the sores on the gums and the sores on my top lip stick to the sores on the bottom lip. All of these things make it hard for me to form words that anyone can understand.

Some people can understand me, some can't. For example, my daughter can't. My 78 year old aunt can.

My first cousin once removed, Jodi, and her husband, John, left here at 1 p.m. Saturday to return to their home in a suburb of Chicago. Jodi's sister takes Jodi and John's children, Shawn, 7, and Audrey, 4, one week a year, and they were going to spend their parenting time off alone at Lake Tahoe. Originally, John had invited me to meet them there, but when he heard I got this cancer, John wrote me that they would cut their vacation short and come to my place and take me wherever I needed to go and to help me any other way they could between Wed. and Sat.

Here is a digression for anyone interested in how to figure out what "first cousin once removed" means. Your first cousin is a child of your parent's siblings (brother or sister). In other words your first cousin is any child of your aunt or uncle.

As this image shows, the child of your first cousin is your first cousin once removed, and that person's child is your first cousin twice removed.

Since Jodi is the daughter of my mother's sister's son, Fran, who is my first cousin, Jodi is my first cousin once removed. And Jodi's children, Shawn and Audrey, are my first cousins twice removed.

To add another data point, children of first cousins are second cousins. So my son and daughter are second cousins to Jodi and second cousins once removed to her children as shown here.



Here are Shawn, Jodi, Audrey, and Joan as they looked the last time I saw them previously four years ago. Jodi and John look practically the same, except that Jodi has a little weight and looks lovely and John has let his beer drinking add a little weight on his 6 foot plus frame and he still looks lovely.

It was a very difficult week for me. They did everything possible to try to help me. John and Jodi cooked and washed dishes. John went grocery shopping, tried to make me strange blender drinks that I requested (Chinese fish porridge among them!) because I thought I might be able to eat them as my mouth sores got worse, kept my yard watered, washed clothes. They even massaged my feet when they cramped painfully one morning (probably due to my not having eaten more thant 700 calories for a few days and not getting magnesium and calcium in sufficient quantities). It was great to have them. I was embarrassed at all the gross stuff I was going through, and the flashes of bad temper I showed under stress and pain. Since they have to do a lot of medical procedures for Jodi's multiple sclerosis, they have had to accept and learn to take many of these kinds of things in stride. It can't be easy for them, but they show a lot of courage.

It is humbling to realize what they go through on a day to day basis. Jodi put on a brave show when John carried her up the stairs. She said, "I'm just a baby." Inside the home, she uses a wheelchair and a rolling walker. Jodi is only 35 years old and John is "29," so he tells me. (She says he is eight years older than she is.) He was a computer science graduate, and she was a student at the Minneapolis College of Art and Design when they met. He got a management job. Her plans to continue sculpting had to be put aside when the MS struck.

Liberty was there unflinching for me as usual all this week at times when I couldn't face having anyone but him help me.

Monday: chemo oncology doctor and nurse; radiation. Evelyn Longo, a fellow student from the diocese's institute for leadership in ministry, drove me to both appointments. The nurse removed the 5FU chemo fanny pack I'd been wearing all week. Checked the stomach tube. Suddenly Monday I had mouth and lip sores.

When Evelyn drove over from Saratoga to take me that day in her big Jeep, I told her I'm not up to talking much, which is completely uncharacteristic of me. She said she'd be the type to not chafe under not being up to talking. In spite of her reticence, I learned a lot about her. She is full blooded Italian from Australia. But she is a pretty and trim blond mother of girls in their late teens and early twenties, and she looks and sounds British. I had a lot of mental adjustments to make looking at her and hearing her. She told me Australia had a "White Australia" policy after WWII, and recruited settlers from European countries. Whole Italian villages came for the opportunities, including her relatives from Sicily and nearby Aeolian islands. Her mom and dad met and married in Australia. They had a green grocery, and Evelyn used to relish keeping shop on Sundays for a few hours when her parents started allowing her to run the place all by herself, at around 12 years of age.

Tuesday: Liberty brought me to El Camino Hospital where the radiation gastroenterology Dr. Chin checked the feeding tube and added a stitch; at PAMF the radation doctor on call Dr. Chang told me that the mouth sores will go away until the next chemo. But he was wrong. They are continuing and getting worse. The chemo doctor's nurse said it's probably a result of the combination of the radiation with the chemo.

Lori Rubin, a training consultant I met about 3 years ago, came from Santa Cruz to pick me up at the hospital after the tube check and bring me to radiation, stop at a nearby grocery and bring me home. Lori and I don't have a lot in common politically, but ever since we first met we have a heart connection. She peppered me with questions about how I would feel having to be sociable with a lot of semi-strangers. In general, that could be daunting when I feel so badly, but not in particular, at least not that day with her. I love the way her mind works.

Wednesday:

I kept trying to eat a day and a half past when I should have given it up. Knowing John and Jodi were on the way, I started making some meatballs. Since I'm allergic to egg whites and milk, I experimented with mashed potatoes as a way to bind them, and included mashed brocolli just for fun. Now, that might sound weird but the meatballs (with chopped onions also) turned out great. But they stuck to the sores in my mouth, and the exquisite agony of trying to pry the stuck chunks off with a toothbrush cannot be (and probably should not be) adequately described.

It was great to see them. They took me to my radiation appointment and watched while Edwin, the technician, clamped the mask over my face.

Thursday

The chemo dr's nurse, Allegra, decided that IV fluids would help make me more comfortable, so J and J brought me into the chemo treatment center (CTC), where I got IVF and she checked my stomach tube, and she gave me some liquid meals to take home. After the IVF appointment, John and Jodi took me to radiation. After I got home, I drank the liquid food until Friday night, when three crates of cans of another product were delivered for me to use for tube feeding along with a pump.

Friday

John took me to Mass with my friends at St. John the Baptist church in Milpitas. I took the host and wine, thinking the wine would soften the host, but it was painful to get it all down. But well worth it. Where else can you get Bread from Heaven?

John went with me to the Morning Prayer service afterwards in a room behind the altar. Usually three or four secular members of the Augustinian Recollects attend, but Friday we also had four AR sisters there in their white habits. The sisters showed John and me where to keep up in the breviary. I have a different version with different pagination than they use, so finding my place was a challenge. Friend Efrem Castro, one of the secular ARs, volunteered to drive this week on Thursday.

Later John took me to El Camino Hospital where I had the stomach tube replaced. Before I left in the morning I called the Home Health Care (Avantacare) to find out when the nurse was coming to set me up with the tube feeding. I had only taken in about 500 calories in 24 hours and was already peckish. The person who answered the phone said a nurse would be here at 4:45.

When I got back after the tube procedure followed by the radiation appointment, I found a delivery on the front porch of cases of feeding solution, bags for dispensing it, a pump, but no IV stand. I called to find out where the nurse was, and they didn't have any appointment set up for me! I thought I only had enough energy to get through my appointments and see the nurse right away around 5, but as it turned out I didn't see a nurse until about 9. Liberty helped her improvise a hanger out of a clothes rack I use to hang clothes out of the dryer, since they had not sent the IV stand.

Another thing that is annoying me no end is that the formula the dietician recommended for me is not designed for tube feeding. I think it is unprofessional that they prescribed me a product that it contains artificial sweeteners and artificial flavors, which I refuse even when I'm healthy. Besides, I am allergic to milk, and it has casein, which is milk protein as one of the ingredients. I'm waiting until I see the chemo doctor today (Monday) to get the prescription changed to a product designed for tube feeding. I cannot believe they would send me that stuff. What does my stomach care if the stuff is vanilla flavored or sweet tasting? What are they thinking? I found two products that are for tube feeding without any of the objectional ingredients, and I'm bringing my recommendations to the doctor today. Evelyn is taking me again.

Saturday

No radiation. Getting used to the tube feeding (or not). J and J took me to a wig shop so I could try some wigs on before I start feeling any worse, in case I lose my hair. The doctor said at the cisplation dose she's giving me, my hair will probably thin but not fall out completely. Jodi and I found some styles that might look good on me, but the salesman was less than helpful and the store too crowded and confusing, so I left after trying one big blond wig with bangs that covered my eyes.

Sunday

I went to Mass at 8:30. Didn't try singing in the choir. It was the feast of Corpus Christi, and I wanted to receive communion. I asked the pastor to give me just a tiny bit of the host. He said I could receive communion by intention, but I wanted to receive communion literally. So he gave me my tiny piece (in which the entire body and blood of the Creator of the Universe resides) and I was glad. I cried during Mass and a lot during the rest of the day. Sometimes I've just got to feel my feelings, instead of letting them come out in anger and judgementalism.

Because the monthly Carmelite meeting is moved up in June because of Father's Day, I missed it. I would have loved the teachings and the fellowship. The formation director, Regina, called me later and reminded me of all the right things I have to remember about my sharing in the sufferings of Christ. Whatever way God wants it, God's will be done. When I told her my fears of it all getting even worse, she reminded me of how God gives each day the graces that are enough for that day.

As someone else's email said, "If God brings you to it, He'll see you through it." (Thanks, sorry I cannot remember who.)

I'm not adjusting well to the tube feeding. It gives me heartburn. It backs up into my throat. I can't take the volume they have prescribed for me. They want me to take in about 1500 ml. but I can't take more thatn 1000.

So my life as a cancer patient in treatment goes on. Many appointments fill my days. In my spare time, minute by minute, I have to be taking care of my mouth sores and burnt throat. I gargle with salt and baking soda solution to loosen the accumulated thick saliva and soothe the sores in my mouth and spend a lot of time getting the saliva and gargled solution out of my mouth. Every once in a while I get some relief from something called "The Stanford Mouthwash." I can swish it and even swallow it to soothe my burning esophagus. I take an occasional belt of tylenol 3 (with codeine). I have to be hooked up for 12 hours a day for feeding.

I constantly wipe my bleeding lips with vaseline to soothe them. All in all, I'm not a pretty sight.

And it's only the end of the second week. As they keep telling me, it'll get worse.

Hunkering down for the long haul.

Monday, June 07, 2004

Day 6 Corrections

John Zolnosky is a former Trusted Solaris engineer, who is from South Dakota, and so he can be counted on for accuracy in this correction:

-------- Original Message --------
Date: Mon, 7 Jun 2004 09:38:02 -0700 (PDT)
From: John Zolnowsky

My goodness, the chemo is adversely affecting you.

While Dakota Weleyan and The World's Only Corn Palace are in the same
town, the name of that town is Mitchell, South Dakota. Mandan is the
name of a town in North Dakota, just west of Bismarck.

Take care -JZ
------------------

Nancy Block pointed out that there is also a Corn Palace just off Lawrence in Sunnyvale/Santa
Clara near Central(?). When I wrote back to question this, she said:
> Yep. As Casey Stengel said, you could look it up.

I looked it up, and the Sunnyvale Corn Palace is a farm stand. See this article for info.


The Mitchell SD corn palace is a whole building decorated with murals made of colored
corn kernels. See this cool postcard.

Okay, strictly speaking, they don't have the only business called a
Corn Palace. But they do have something unique.

I understand they have a problem with the local birds eating away
the murals.

Roseanne

Sunday, June 06, 2004

Day 6: About This, That, and the “Salvific Value” of Suffering

Christina Fu, an old friend from the Trusted Solaris group who now works as a security programmer at Netscape/AOL, wrote me some emails with some snippets I’m including below. What she wrote got me started to musing about suffering. I was additionally inspired on this topic by emails to and from my former-brother-in-law, Marv Miller. I started writing a long email in reaction with the thought of sending it along to this group. After about an hour and a half of writing in the wee hours during one of my first nights of insomnia after starting the chemo, I hit the wrong key and sent the write-up to the big bit bucket in the sky. That in itself was enough suffering for that morning.

Then the cumulative effect of the chemo and the radiation started getting to me and I couldn’t stand writing or doing very much of anything for a while. It’s Sunday and I’ve had two days off radiation, (and even though I’m still tethered to a 5FU chemo drip) I’m feeling a little more human. Can’t keep an old writer away from the keyboard for long.

So, I’m back, at least temporarily. Here I go again with a meditation on suffering merged in with my usual digressions.

Let me back up to Christina’s reaction to my getting a feeding tube on May 24.

Thu, 27 May 2004 Christina wrote:

> Roseanne, I have been wondering if you can eat without problem with the tube in place. Is it painful
> in day to day life? I just hope it's not too painful or uncomfortable for you.

I wrote her back that I can eat and that the tube itself didn’t hurt. “It's just hanging there from my stomach, which isn't the most esthetically pleasing thing to see . . . “

Fri, 28 May 2004 Christina wrote:

> I nearly fainted at the sight of these words...
>> It's just hanging there from my stomach, which isn't the most
> ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^


And then on Wed, 3 June, she wrote:

> Dear Roseanne,
> I just read your report on "2nd day." I cannot bear to imagine the suffering you are going through.


My reply was:

I'm not suffering too badly yet. I'm a little sick to my stomach. My throat is burning a bit. I have these stupid tubes hanging from me and a fanny pack I have to wear 24 hours a day to pump a chemo drug called 5FU until next Monday.

I have a total of 39 radiation sessions scheduled for the next two months M to F. Every 21 days I start a chemo schedule, with a day of chemo and IV fluids at the treatment center. And the end of that day they hook me up with the fanny pack (which I'm wearing now) that has another kind of chemo drug to be dispensed over 5 days.

Days 2, 3, and 4 of the 21 day cycle I will spend getting 3 1/2 hours of IV fluids like I did yesterday and today. Every weekday ends with a trip to the radiation center. On day 7 of the chemo cycle they unhook me from the fanny pack. So I don't have chemo again after next Monday for another two weeks.

It is a full time project titled: "Getting Roseanne healed of tonsil cancer." The scheduling is taking almost every hour of every day. Good way to keep up my project management skills. I've got a pretty good road crew.


Ever since I got my notice from Sun in November, I’ve been tutoring Christina’s daughter, Carolyn, in Social Science, at my dining room table. One Saturday, we substituted a crash review of her biology coursework to prepare for a quiz, and during the summer, I planned to teach her writing, using Strunk and White’s Elements of Style. The way I feel now, I don’t think I can continue, even with the email classes we had discussed trying to have instead of weekly one on ones at my place. Carolyn is 10, and I get a big kick out of her. So I want to share this little story Christina told me about Carolyn:


> I had a good laugh at your "Grand Canyon" experience. Does laughing still bother you? I need to know so I can be careful to try to be as dull as possible ;-)....If laughing still bothers you, skip to the next paragraph...if not...I have to share this with you...the other day, I found Carolyn lying in bed in the middle of a day so I asked her to get up and do something. She replied, "I'd like to rest in peace." I laughed and explained to her when "rest in peace" is used and what it means.


Marv is my ex-brother-in-law. I used to be married to his brother, Lee, known to most of his friends as George, who died sadly at his own hand about 9 years after our divorce. Marv is head of the religion department at Dakota Wesleyan University, in Mandan, South Dakota, the town which is also the location of the The World's Only Corn Palace.

Marv wrote me an email when he heard from my daughter, formerly known as Sunshine, of my cancer diagnosis and then another one when he heard the good news that the cancer had not spread:


>Hi Roseanne
>I heard the news from Sunshine that your cancer had not spread, and I'm glad for that bit of hopefulness.
. . .
> When you sent me the first email I immediately thought of the
> title of Rabbi Kushner's book, When Bad Things Happen to Good
> People (that's you!). He says he was left unsatisfied with all
> the standard answers people gave him for his teen son's progeria,
> and could only conclude that God does not prevent bad things, but
> will be there to go through them with people. I don't know if
> that's the whole truth, but it seems a good place to start.
> You're in my prayers. Hang in there. Marv


I wrote back to him.


Sent: Saturday, May 29, 2004

. . .

Have you ever heard the Catholic theology of suffering? The current Pope has preached on it a lot since he has lost his health, his handsomeness, and his strength. (Note: Here is the Pope's letter on the "Christian meaning of human suffering from the Vatican web site: http://tinyurl.com/3acxq.) It's got to gall a proud talented man like him to be drooling in public and not being able to hold up his head. Although, it's amazing how much stronger he seems to be lately. I "blame" it on all the people who are praying for him.

The teaching is that when we suffer, we make up what is lacking in the sufferings of Christ. St. Paul tells us (Col 1:24): "Now I rejoice in my sufferings for your sake, and in my flesh I complete what is lacking in Christ's afflictions for the sake of his body, that is, the church,"

The best living illustration I ever saw about this topic came about when I met a young woman, Josie Gomez, barely 30, at a long term care hospital in MA where I was having scoliosis surgery (surgery to try to fix the curves that had developed in my spine when I was 11) and a long convalescence when I was 15. Josie had arthritis so bad she couldn't walk or feed herself any more. She was in that hospital for good. She was puffy from steroids. Her fingers were twisted.

From a photo she had of her and her husband, I knew she had been beautiful. Before she came to the Lakeville hospital where I was, her doctors had given her the then-experimental steroids to help the arthritis, and then had stopped very large dosages without tapering off. As a result, her hips had locked.

The nurses had to put her in a hoist to get her into a wheelchair every morning. Forty of us women and girls lived in a long ward in what had formerly been a tuberculosis sanitarium. Those of us who were able to get out of bed would gather and play board and card games in the sun room together. The teenagers who had scoliosis surgery would lie flat on gurneys and wheel themselves around. Josie sat in her wheelchair and laughed at the antics of us teenagers. She was always pleasant.

Her husband had left her, and her two little children were being raised by her old Italian mother. I asked her in the frank way that kids have how she could stand what had happened to her. She said that a priest had counseled her to offer all of her sufferings up to God. She was a great inspiration to me, and I think that saintly woman's prayers helped me to return to faith as I got older.

Not that I was willing then to accept that I was going to have to accept anything or to settle for being anything less than perfect. But I’ll have to get into my life as a tissue of denial at some other time.

We can offer sufferings as penance for our own sins, and also for the benefit of others, the Church and the world. Another relevant use of suffering is purification. Purgatory is the process of burning away all that is not holy in our souls so we can stand God's holiness. Some of us get to start the process while we are still alive.

When everything else is taken away from us we get the opportunity to fasten our hearts on God. I'm doing a lot of clinging to the rock these days. I woke up this morning and started singing the old hymn "How Can I Keep From SInging," which includes that phrase: "while to that rock I'm clinging."

I woke up at 3 another morning after the diagnosis and went into Dante's Purgatorio to refresh myself on the purifications required of souls who share my favorite sins. Dante had the brilliance to show the souls as eager to endure their cleansing because they are eager for union with God. I am getting a strong sense that the pain of purgatory could be the pain of the sin stains being burned away in the presence of God's perfect holiness. In the economy of salvation, all earthly trials, including death and labor pains, are a consequence of sin. See the story of Adam and Eve.

To endure something like this we have to be convinced that God is permitting it (not inflicting it), and to trust always that we are in God's hands and He won't give us anything to endure that He won't be there to guide us through. Which, I see, Is close to what you are saying.

Love from your sister in Christ. Roseanne


Marv wrote me back:


Subject: RE: you've got mail

Hi Roseanne

Thanks for sharing the theology of suffering. I didn't know the Catholic approach to suffering, but I have always been impressed with the references in Paul & I Peter to the idea of sharing Christ's suffering. I think Protestants tend to like Paul for a lot of ideas, but this one we generally ignore. But the idea of sharing in Christ's suffering adds a lot to one's relationship with Christ! There are some ways in which we can be like Christ.

You are in my prayers. Hang in there. Marv


Some time before he wrote me back, I also forwarded the following poem to him.


Subject: W. H. Auden's poem on suffering
Date: Sat, 29 May 2004

I found this poem 3 years ago when I was writing something about the fall of Icarus. Cleaning out my mailbox today, I realize more strongly that this poem also has something important to say about suffering.

Musee des Beaux Arts

About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully
along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.

In Breughel's Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.

Friday, June 04, 2004

Day 3: June 3

The first night after the first chemo I was wide awake most of the night,
feeling queasy, etc. I picked up one of the books, Love, Medicine, &
Miracles, which Nancy Block sent me, and I found
a lot in it to be helpful. The author, Berni Siegel, an M.D. who counsels
people to supposedly help them understand what they are wanting
to get out of their sickness, really of lost me at the point when he revealed
he was speaking with the voice of his avatar, George.

Anyways, the part that was helpful was to realize that nausea isn't
mandatory. I put off taking the steroid-based nausea suppressant
drug they had sent home with me, and made it through with one Compazine.
And the whole next day I didn't use an anti-nausea drug either, until
I took a Compazine at 7. I'm leery about taking steroids. If I can avoid taking
a drug that suppresses my immune system to control nausea, when I have
anyother way to deal with it, I want to skip the steroid drug.

I noticed one book they have at the CTC (chemo treatment center) yesterday
and had to laugh. It is called, "Having a No Hair Day."

I'm going to get some ginger tea, which is great for settling your stomach.
Actually I can grate some ginger into some hot water, without having
to go to the store.

Wednesday, June 02, 2004

Day 2 June 2, 2004

Second day of radiation, first day of chemo.

Contrasting cards were waiting in my mail yesterday. One was from the Faith, Hope, and Love card company, sent to me by my sister, Mart. It expresses
perfectly some things I hold true, "God holds infinity in His hand and the answer to every prayer in His heart. Trusting in His love to see you safely through this time of special need." And it had this quote from, Psalms 124.8: "Our help is in the name of the Lord, who made heaven and earth." Amen.

The second card is a Georgia O'Keefe postcard of "Cottonwood Tree in Spring," which is a painting of the explosive energy of spring's rebirth, a painting I've never seen before. The card accompanied some books about beating illness, from a supportive, secular, and sometimes profane former co-worker who makes art glass and who lives in Oregon. Her postcard says, "I hope these books will help you to defeat the ba$tard. Stand fast. Thinking good thoughts for you. Nancy."

I don't resent my cancer, so I haven't begun to call it any derogatory names. At least not yet. (The former champion of "free speech" still lurks in my
personality, ready to break out under stress with a stream of sailor language.)

The cancer is just a little cell of mine that was minding its own business and then one day started to divide without malice or motive. It's just unfortunate that the uncontrolled division of that cell is something that can cause me a lot of pain and possibly death.

Today Annette drove me to the chemo treatment center in Sunnyvale in her
silver
Mustang convertible. I spent from 10:30 to 5 getting IV fluids and
chemotherapy with one drug called
cisplatin.

Annette was perfect company. The day was low key. I discovered that my
nurse
is named Annick, and she's French, from Cannes. Typically for me I kept
practicing my French
on her phrase by phrase as she came in and out off and on all day. After
a couple of hours, she said she was impressed by my accent.

Around two, Annette went out to aptly named La Boulangerie and brought
back
sandwiches. Changes to my taste buds meant that the swirling
pumpernickel/light rye
bread tasted metallic. At other times, we snacked on oranges and
almonds. We tried
watching "Legally Blonde II" on my PowerBook, but the sound
was too low without headphones or external speakers. The nurse moved us
into a
small room with a TV/VCR, and when we asked for what we thought was a
video of the
natural beauty of the Grand Canyon, we found ourselves watching
"Grand Canyon" a recent R rated movie about a guy whose
car breaks down in a ghetto and what happened to him then. I couldn't
handle
the fear, when he was surrounded by a gang playing with his head,
so we gave that up too.

To my surprise, I was able to eat , albeit half of my usual amount
of lunch and dinner. Dare I tempt things by saying there is
no nausea yet?

Before I left for the radiation appointment at the end of the day, I was
trained by a
home care organization's nurse, a Chinese woman, and hooked up with a
fanny pack for 5 days of another chemo drug, 5FU. The treatment center
also gave me steroidal and another type of anti-nausea medication.

Annette commented that she would have been screaming from not being able

to understand the Chinese nurse from the home care agency. I understand
most
accents pretty well. A lot of my coworkers here in CA have been Chinese,
as is
one of my best friends. "Imagine," I said, "the communication breakdown
if
that nurse would be trying to talk to say a patient from Mexico." Mind
boggling.

Communication in this part of the world is severely hampered by the
language
barrier between people who speak English predominantly and people who
come here and speak
mostly to others who share a common tongue and who also much less
frequently attempt to be speaking English to the rest of us.

I told Annette about the Vietnamese choir director at my church who has
been here maybe
five years and whose English is quirky, I think because he usually only
speaks to other Vietnamese. I told him I had cancer three weeks ago and
was offended by what seemed to be his cold reaction. Then at last
Friday's rehearsal, he all of a sudden understood, and became very
friendly
and talkative. Then from what he said, I was even more offended.

"Will you leave me your house?" he said. He had been to my house (and
loved it) because I tried tutoring him so he could pass a class in
English as a second language.
I had given up tutoring him because he wouldn't allow me to teach him
how to
write but instead he tried to start dropping off his essays so I would
rewrite them for him. I refused
on principle to help him get a grade he didn't deserve.
>From then on, he had treated me more and more rudely.

Last Friday, as I stood speechless about his comment about the house,
he continued, "How much could you sell it for?" I tried to explain,
"There is no equity
in the house. I bought it only three years ago and refinanced it three
times.
If I sold it today, even though it's appreciated, I would owe the bank
or
the real estate agent at least $2,000, last time I figured it out." He
obviously
did not understand what I was saying. He then proceeded to launch into a
series of partly comprehensible stories of relatives who died of cancer.

I showed him the name of a hymn I love, which was sung at the
Healing Mass I attended last week, the first time I ever heard it at a
Catholic
Church. It was popularized in the 60s by a folk music group. The song
is called, "How can I keep from singing?" by Robert Lowry.

The song had been identified as a Shaker song, but a search of the
Internet
revealed that it was written by a Baptist preacher and included in a
collection of his hymns
in the songbook Bright Jewels for the Sunday School (New York, 1869).
One day after I heard the hymn last week after years, I wake up and
start singing
it. I want to try to play it on Liberty's music keyboard, so I asked the
choir
director to find me the music.

Sunday, the choir director was nice enough to bring me a copy of the
music he'd located for the hymn
and practice it with me briefly. He said, happily, "I'll play this at
your funeral."

It's not just language that is involved in this annoying set of
interchanges,
it is conflicting cultural expectations. But that's a whole other story.

For the radiation appointment after all that chemo related
stuff was done, we got to the Palo Alto Medical Foundation at 5:30 and
had
to wait about 20 minutes. The receptionist wasn't at the desk when we
walked by, but as we walked to the radiation waiting area, he popped his

head around the corner. As I said to Annette, "He's got more highlights
in his hair
than I do." I said, "You weren't at the desk when we went by." He said,

"That's all right. We've already something-ed the after 5 appointments."
"What's that mean?" I said. "That means you're already checked in."
"Good, thanks." I cannot remember the word I rendered as "something-ed"
but it was an unusual word that slipped right off
his tongue and made no sense to me. And this is from a native speaker
of English. His lapse was more of a jargon-related misuse of the
mother tongue.

They say they are usually very punctual, but for some reason so many
people at this time need the capabilities of the A machine, which I get
treated on,
that the technician is squeezing patients in before the start and after
the end of
his work day to accommodate them all. And so the time pressure is
wreaking havoc with
their punctuality. Fortunately, the waiting room is an extraordinariy
nice place to,
well, wait.

Through sliding glass doors is a garden courtyard, its walls painted
pale ochre,
with green trimmed concrete paving. Fountains are
playing, and since its only access is through the radiation treatment
waiting room, it is a private peaceful space.

The radiation (XRT) technician, Edwin, said today's session went a lot
better. For one
example, I didn't have waffle face when I was done, like I had
yesterday.

Let me explain waffle face, for the uninitiated.
In the first radiation setup session, they molded a mask for me to wear

to keep my head precisely positioned for the radiation. Edwin
has repeated proudly a few times that he is able to direct the radiation
to within a very
small margin (1/16") not like the old days with the cobalt treatment
with
radiation all over the place. The mask is a openwork contraption made
up of (I think)
plastic strips, and when they tighten it down, if you haven't wiggled
into
it exactly right, t can leave your face temporarily looking like a
waffle.

The new machines look like CT scanners. The difference is that to set me
up
for the XRT, they position the back of my head and neck in a molded
form, line me up with some thin green lines of laser light, put in a
mouthguard, and
then tighten the mask down. I thought back
to yesterday to realize that Liberty and Edwin were both diplomatic in
not
mentioning my waffle imprint. I was in my post-radiation introspective
state, and even if I did look in a mirror, I probably wouldn't have
noticed.

The chemo drug didn't affect me, yet. The radiation causes me
to get very introverted. I feel that my body is marshaling all of
its resources. The white blood cells are signaling to each other,
"Hey, fellas, there are multiple burn sit'es in the throat area,
Let's go do some damage control. STAT. Send in the water
delivery helicopters and the guys on the ground with their
foam fire suppressants." All non-essential activities are shut down.

But somehow I can still sit and write when I come home.

Now to close with my favorite hymn of this period of my
life.

How Can I Keep From Singing

(Robert Lowry)

My life goes on in endless song
Above Earth's lamentation
I hear the real though far-off hymn
That hails a new creation

Above the tumult and the strife
I hear its music ringing
It sounds an echo in my soul
How can I keep from singing

What though the tempest loudly roars
I hear the truth it liveth
What though the darkness 'round me close
Songs in the night it giveth

No storm can shake my inmost calm
While to that rock I'm clinging
Since love is Lord of heaven and earth
How can I keep from singing

When tyrants tremble sick with fear
And hear their death knell ringing
When friends rejoice both far and near
How can I keep from singing

My life goes on in endless song
Above earth's lamentation
I hear the real though far-off hymn
That hails a new creation

Lord how can I keep from singing
Oh how can I keep from singing
(Thank you Lord)
(Thank you Lord)


=============================================================

I'm getting a lot of comfort "clinging to the Rock." If we
realize how often the image of God and Christ as our Rock, our shelter,
our
bulwark, is evoked in the Old and New Testament, we can see the fact
that Jesus gave Simon the name which means Rock is
intensely significant. His Church is built "upon this Rock."

Researchers found that in that era, the name Peter had not been used
until Jesus gave that name to Simon.

So I cling to the Rock that is Christ in His Church built upon Petra,
the man formerly known as Simon who became the first Pope.

Here is one more thing I talked with Annette about today as she
drove me home along El Camino Real. I said that us Christians as part of

His Church are Christ on this earth. We are members of His body. We do
His work. He left us with the admonition that whatever we do to the
least of His people, we do to him.

And then I remembered the story about the little boy who was
afraid to go to bed. His religious parents told him he shouldn't be
afraid
because Jesus was with him. He said, "But I want someone with skin on."

So my point to dear Annette was that today she was the major
manifestation for
me of Jesus with skin on. And many of you are being the same for me in
various
other ways, Jesus with skin on. I hope to return all the favors,
similarly. I owe you!

June 1 Day 1 Blog

Yesterday (June 1) was my first day of radiation therapy. I am
continuously grateful for how many people are praying for me. The
variety of people is astounding. I want to tell you about today's two
extreme examples, a retired priest with a thick Irish brogue and a very
nice black man who begs at the 101 North freeway entrance on Oakland Road.

Around 2:30, as I was getting ready to go meet my son at CISCO and ride
with him to Palo Alto
Medical Foundation for my first radiation appointment, I got a call
from a retired Irish priest from the archdiocese of San Francisco. I had interviewed
Father Gerry O'Rourke a few times in February for an article I wrote
about a Sacred Space Exhibit in the Presidio, since he was the Catholic
representative for Interfaith dialogue and had been one of the
consultants for the exhibit. He had called me and left a message last
week to say hi.
So I told him via email and a phone message what was going on with me.
Yesterday's call was the first time we'd talked since I left him the message.

First he advised me to receive the Sacrament of the Sick (formerly
called Extreme Unction). I told him I'd already done that when a friend
had brought me to St. Nicholas Church in Palo Alto for a healing
service last Wednesday. He said, "Good," and then, "Do you want to do
a process about this?"
Right on the phone, he led me through a series of exercises that
included asking my body to forgive me for whatever I might have done to
bring this on. Even if I was totally innocent, he said, we don't give
our bodies credit for how much our bodies do for us. "And when your body
forgives you, as it always does," then he told me that I had to be open
to whatever the doctor's are going to do to try to fix this thing. I
told him that made sense. It reminded me of the "discovery" in the
LaMaze writings I read
in the 60s that women who breathed into the pain of childbirth had less
pain. "That's right,"
he said. He ended with asking me to lay my hand on the area that was
giving me the most
trouble, and led me in a prayer to the Trinity, first the Father, and
the Son, and the Holy Spirit.

On the way onto 101, I saw a man I used to see almost every morning at the
freeway entrance on my way to work. I had given him two bucks each time
I saw him, because
I'd been given that as a penance one time after confession. And I keep
it up for selfish
reasons: The Bible says that almsgiving covers a multitude of sins.

I think the neighborhood homeless guys work out among themselves who gets
to beg on that median which hours of the day. Each of them seems to have
a shift. I don't envy
them, standing on the median on busy Oakland Road with the smell of
truck
exhaust and the broiling hot midday San Jose sunshine baking them. And I don't
envy where they sleep. There are a couple of seedy motels on Oakland Road,
one called the White Way Motel and the other the Ooh La Lodge, and maybe
some of them stay at one of them. But most likely they sleep under the
Coyote Creek overpass
near the golf course. I took a long hike one day up Oakland Road and
when I
walked down to the creek, I saw the kind of litter that indicates a
homeless encampment.

One day in November, I saw him, gave him his two bucks, and I told him,
"I just got laid off." He looked genuinely concerned. Then I didn't see him
for four months, because the times I would be driving were not on his shift.
About three weeks ago, I happened to see him, and he got very excited.
It felt
like a reunion between old friends.

Then yesterday, as I took out his money from my wallet, I said,
"Remember I told you I got
laid off?" He said, "Yes." I said, "Now I've got cancer. How about that? First
I lose my job and then my health." He said, "Oh no," and he clutched my
arm in sympathy where I rested it in the rolled-down window. He looked
closely at me.
His face was all concern. He said, "This ruins my day."
His eyes are cloudy (from cataracts maybe?) and
they were filled with tears! I said, "I'm sorry."
The light changed; I said, "I have to catch this light," and I drove
away. He
said, "I'll pray for you dear." I'm always affectionately
calling people honey, and I said, "Thanks, honey. God bless you."

Many people reading this will think me a kook perhaps, thinking I have a
friendship with a beggar, and exchanging endearments. I don't know
what to say in my defense. You're probably right. But I was very, very
affected by that man's offer to pray for me.

After the radiation session, the top of my mouth felt like it does if I eat
something too hot. You know how the skin on the top of your
mouth loosens when you burn it and then quickly
heals? Sort of like that. This morning when I woke up my taste
buds seemed to be affected.

Today I go to the chemo treatment center in Sunnyvale
for five hours of IV fluids and chemotherapy with one
drug called cisplatin. Before I go to the radiation appointment
at the end of the day, I will be hooked up with a fanny pack
for 5 days of another chemo drug, 5FU. My dear, motherly, patient
friend Annette is going to sit with me the whole time.

Another little story: while waiting for a chemo teaching session
with the oncology nurse yesterday morning, I saw a little woman
with her bald head covered with a little hat come to the desk
and find out that even though she had been called by one
of those automatic phone notification programs to come in that
day, her appointment was written down for the next day. She
sounded like maybe she was retarded, because she whined
as she talked. I talked to her after she sat down while they
waited to see if they could squeeze her in. I think now that she
was simply overwhelmed, deeply fatigued, discouraged, and
in pain.

She said, "I cannot come back tomorrow. I don't have anyone
to drive me. I have to drive myself. It is too hard." I am very sorry
for her, and sad at the difference between our situations.
I have an immense number of resources at my
disposal compared to her. It is very hard for those
who have no one.

Thanks to you all, I have many "ones." Let's all try to remember
the ones who have no one .

Tuesday, April 27, 2004

The Lonliest Man, Continued: The Eureka Cafe

Driving through Eureka after dark, I spotted a sign for the Eureka Cafe advertising "American and Chinese" food. I found a booth and ordered the #1 combo for 1: sweet and sour pork, chow mein, chicken fried rice, and tea. In a place like this, where most if not all of the customers are non-Asians, the food is drastically modified to suit the local tastes, a far cry from what you find in the Chinese restaurants in the Bay Area, who have mostly Chinese clientele. The Eureka Cafe does not have any barbecued ducks hanging in the window or live shrimp and cod waiting their turn on the chopping block like I often see at Chinese restaurants where I live.

While I waiting, I read from Hermit Lady's Guide to Route 50. A young Chinese waitress wearing the same type of thick-soled shoes that were the style in San Jose waited on me. The sweet and sour pork was tough and came without the pineapple and green peppers I'm used to seeing with that dish. The chow mein noodles were like the dried ones you can buy in cans in grocery stores--except bigger. The decor hinted at the restaurant's earlier life as a frontier-style restaurant with pine paneling and rustic metal chandeliers.

Highway 50 goes mostly east and west across the middle of Nevada. The Hermit Lady illustrated the ranges that the road passes over in cross section with the name of each place along the way and its elevation. Eureka, 6,XXX feet. East about five miles, the road rose to 10,xxx feet, and then dropped again into the next valley. There were several more of those roller coaster rises and dips before Ely, the next big city.

When I finished my meal and stood up to prepare to leave, I put my hand on the back of my booth at the same moment the big bearded man behind me leaned his hairy arm back and draped it on the back of the booth. My nails slightly grazed his arm, and I apologized for scratching him, exagerating the apology for humorous effect (since I was well aware that I had done no damage to his arm). I looked at him and I thought, "Hmmm."

The woman sitting across the table from him chimed in, "I saw you reading. What are you reading?"

I said, "I picked up this book from the Cold Springs bar and restaurant. It tells about points of interest along this road."

The woman, who introduced herself as Annabelle, said she'd noticed the cartoons as I was reading. I opened to the page that described Eureka and showed them.

Annabelle told me she had never stopped at the Cold Springs bar before. I told Annabelle about the sign at the bar that advertises a drink called, "The Cold Springs Duck's fart." I said I'd asked the bartender, and she'd told me that the drink is a combination of five liquors. Annabelle said that this year she had learned to be a bartender herself, and although she had heard of the drink before, she hadn't tried it.
I think we were still chatting about the book when Neil came in. They both recognized him, and introduced him to me. "Neil is the best dancer." Annabelle said. "He comes into the bar where I work. Everyone knows him. He can teach anyone to dance."

Neil said, "You're right," and then said, "I'll prove it," and held out his arms to me.

"No, no, I can't," I said, thinking about how long it was that I'd had a chance to follow a man in a dance. "Yes, you can," Neil said. He took me in his arms, right then and there, and suddenly, with no music, we were dancing.

It was very nice. Then, reality struck. I looked at the waitress, who was waiting to get by us, since we were partially blocking the door to the kitchen. Feeling lumpy and self-conscious, I pulled away. "You're right," I said. "Neil can teach anyone to dance, even me." Playing my reaction up again. At the same time wondering at what had just happened. It wasn't a head thing at all, learning to dance. It was something else.