Saturday, July 17, 2004

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.

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