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!

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

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.

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.

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.

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.

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.

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.

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.