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 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.