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I'm sorry to inform you that Will Barber passed away on September 12 in a Houston hospital. He was sixty-two years old.
Will Barber joined Daily Kos on October 5, 2006, with the user name willb48. He posted his first of twenty-two diaries on May 21, 2007; his last this part March. On June 16, 2008, Will told us about his cancer diagnosis. He kept up a lively conversation with us for over two years after that.
On 12/6, Will's sister contacted me, apologizing for the delay. She had just gained access to his email account.
Will passed away September 12th in the early evening. He was due to be discharged from the hospital the next day. The official cause of death was massive hemoptysis due to lung cancer. We're still in deep grief to have lost him so suddenly. I know he valued his e-mail friends GREATLY. You were a source of great comfort and support to him.
Will talked about writing more diaries, sometimes at great length, but he never got around to it. One of his greatest friends here, Jill (JG in MD), has joined forces with me to turn this death notification into a life celebration. We want to let Will have his last diary.
Will loved this site, but he lost TU status while he was in the hospital in April and May.
Bless my niece for getting me on the net. This has already improved life considerably. The morning nurse rearranged everything around the bed to make ergonomic sense. Now I can read Cheers and Jeers while eating breakfast!
I'm no longer a TU, alas. I have no donuts to give. Back in the nineties, I decided to become a baker. I experimented with bread recipe after recipe. One day, I had a flash of genius: what if I fried, rather than baked, the risen dough? Oh, the result looked good! I took a bite - and discovered that I had invented the doughnut. It seems unfair that the credit for this invention should ever lapse, but so it is at DKos.
I may write a diary entitled "Give Me Back My F***ing Donuts, Kos!" If I do, be sure to recommend the tip jar.
The next day he talked about TU status some more, but then he went on to other topics.
I had forgotten giving MB a donut. That's probably why I can't get my TU status back. I should comment more, but that would be a sign of weakness.
Being a Texan, my first line of defense has been Dr. Pepper, but even that seems inadequate. Dr. Pepper is sovereign for all digestive complaints, is a belief a lot of Texans have, and there's a lot of truth to that. I had my appendix out in 1996, and got an ilius, no food or water, just IV and a nasty tube up my nose pumping out bile - after nine days, I decided to try Dr. Pepper as a mouthwash, being horribly tired of the foul taste in my mouth. I didn't even swallow, just swished. Before I could even spit, my bowels started to move - luckily, I was in the bathroom (didn't want the nurses to see me with a bottle of soda)! A miraculous cure! Exploratory surgery was next on the schedule - averted! Home again the next day!
I knew you would enjoy this anecdote, because it involves the bowels. You nurses ...
I really did tap into the beneficent part of my being at the rehab facility, except for the hell I gave a select few on my first day there. I'm a pretty shrewd negotiator. I showed up at the admissions desk early in the morning, my first full day there, and demanded to go home unless a list of conditions was met. They offered compromises, which I rejected indignantly. I was pretty well aware that they weren't going to get ANY money from Medicare until I signed certain papers. I had also seen that they weren't at full capacity.
So, I got internet access, a phone by my bed, and a different diet. I really got to like Miss Rose, who was the morning chef. God spare those who had to eat the regular lunch. She would send me salad, a sandwich and chips. I had to give up on supper. Three regular-sized Snickers bars and a banana make an excellent late-night meal, if supper doesn't work out well.
I'm kind of missing rehab. It's not just the breakfast in bed. I got used to sitting out on the patio with the patio crowd. Most of them were stroke victims. All of them were in far worse shape than I. So, I kind of got to be the guy who helped people out, as best I could, when I could. Sometimes that involved fetching coffee, sometimes opening a door and giving a shove to a wneelchair was of service. Just keeping a conversation going with a worried man is a skill I have - not that it's much fun to do. One guy was due for a liver biopsy (via a catheter inserted crotch-wise) and got news that his wife had had a stroke, and was now blind. I spent a lot of time with him, extracting his life-story, starting on a dairy farm in Wisconsin.
[Redacted] - that was his name - didn't come back after leaving for the biopsy. Dunno what happened there.
I've decided you are OK, dear nurse. Two forms of identification will do, and we can be allies. So, have a cup of coffee, and a very real doughnut (or wheat toast). Sit on the porch. Don't worry about the rattlesnakes, they won't bother you if you don't bother them. I've been meaning to ask you: do you know how to hot-wire an F-150? Maybe we could go downtown.
Stay in touch, dear friend.
Love,
Will
PS
Hmpphhh. The Dr. Pepper seems to be working. Good thing, too. I guess there's no point in puitting a box of bullets in the microwave.
Riddle: What happens to little girls who eat bullets?
Their hair comes out in bangs!!!!
Omigod, I love sophisticated humor!
Only two days later, May 9th, Will was STILL talking about his TU status (and still getting nice drugs, it seems):
I don't really need TU status, but the square "Recommend" box is so ugly.
As Black Elk said, "There is no power in a square."
I'm working on my own diary, an essay in how to deal with hospitals and rehab centers. "Don't Go There" is the working title, but I had indigestion when I chose it. A more balanced perspective will probably emerge when the side effects wear off.
I'd visit you in Colorado, but they took away my wheelchair when I left rehab. It's a lot harder to thumb a ride without a wheelchair, is my experience, judging by last Wednesday. If I once got to Pike's Peak, I wouldn't need rides. It's all downhill to Missouri City, from there, if one goes via Kansas and the Texas Panhandle.
Ah, my dreams of travelling the world!
I'm still working out how to get back to Italy. Hijacking airliners has gone out of style.
Thanks for being a friend. I can't send you a donut. Have pie. Preferably, à la mode.
Love,
Will
In late May, I asked him about a PET scan he'd just had:
The good news, no new tumors. The bad news, the old one has decided to wake up. So, more chemo, starting Thursday. The old tumor (lung) is a LOT smaller than it used to be. The good news, the chemo they're going to use is a lot less toxic than the previous three drugs they used.
I actually like the chemo sessions - the nurses are so wonderful, and I get some reading done. I have a catheter port in my chest, so I'm ready to rock. I've gotten quite indifferent to needles and such.
The brain tumor is nearly obliterated. They're going to clean up the last bits with radiation. The very good news is that they've gotten a lot better at that. I won't be doing the whole-head thing, which carries a risk of memory loss and involves daily doses over several weeks. My doctor got the first CyberKnife machine in Houston, and I went in today for a scan and to be fitted with a head-form. The procedure is fast, painless, with no after effects they say. Dr. Carpenter got his new toy only last summer, just in time.
On the whole, not a bad Thursday's news.
Last spring, Will sent Jill some of his pithy sayings and poetry, and he wrote a little about his life.
We're all sinners in the hands of an angry god, some say. Others opine that that's just the undercooked beans talking.
Ghosts roam the night, to seek the sleepers out
And feast upon their dreams.
Ghosts search the night
For old memories, the sound and sight
Of passions they have lost in silent ground.
Dreams roam the night air, seeking ones who wake,
Their beating hearts roused by contact with divine
Spirits who call them to arise, and shine,
And dream nobler dreams, nobly to speak
Of all the Earth's travails, and of the good that there
Lies 'round about the feet of those who walk
About her earthen walls, of the sweet silks
That 'round the ankles of her maidens swirl.
Ghosts and dreams recede westward, as the sun
Calls all the mortals to begin again. (2006)
My time in Arabia (1981-84, three-year contract) was the time of my life. I wasn't in the oil biz, I was EDP Coordinator for a consortium managing airbase construction. Most of the westerners saw Arabia as a pit where they got their money, I suppose. I certainly did not feel that way, and neither did my friend Jim [name changed].
Jim and I used to go out to the dunes the night of the full moon (or close) whenever we could. This was hugely romantic, in the sense of being in another, alien world. I was pretty hyped up on the romance of Arabia in any case, having read Lawrence's "Seven Pillars" and Charles Doughty's "Travels in Arabia Deserta" - plus Lowell Thomas's "Lawrence of Arabia", a pretty bit of near-fiction.
One time, when Jim's wife was out of country, we made a big swing around the country, which included snorkeling in the Red Sea. That was the prettiest thing I've ever seen. The reefs are unspoiled, and incredibly beautiful.
Will was an artist. He wrote to Jill about his favorite painting and poem, The Lady of Shalott¸and talked about a similar picture he had painted.
[His astrology teacher, who bought the painting,] asked why there was a swimming rabbit near the magic boat. I merely noted that it was an attractive detail, and wouldn't explain. Actually, I will tell you that the rabbit is quite sinister. It foretold the end of the Carter presidency, trying to board his boat. Plus, in "Monty Python and the Holy Grail" the malevolent power of a bunny who blocked the way to infidels caused even the mighty King Arthur to cry "Run away! Run away!"
I found Will in the ICU in June:
Today, I'm going to a regular room. And, AND I got breakfast!
While they were at it, they cleared up my bronchitis. YAY!
July was a good month. July was a non-hospital month:
Don't count on me to die, just yet. The doctors are pleased with their work, so far. I would describe my situation as "very inconvenient" rather than "suffering" - lord, anyone who ever had a sore foot and jury duty would laugh off my pain. I would definitely like to get rid of the bronchitis, but I have a long way to go to finish the bottle of Biaxim.
{By the way, I have a suggestion for the next time they call you for jury duty: hang a placard around your neck, saying, "Guily! Guilty! Guilty!" You might taint the whole pool.}
I get lunch at El Vaquero every Monday. I wish you could join me, but I'm not at all deprived. My good buddy Arthur comes out every week to take me on errands. He's my other angel. You may picture us at El Vaquero, our conversation honed through years and years of practice to lead to jollity and skirt contentious issues. Margaritas for dessert, and no fair trying to make the other do a spit-take. I got pretty close, Monday.
From the end of July:
I was thinking, a morning a couple of weeks ago, "Is this the best it will be, for me? Because, that's unacceptable." Idiocy and weakness, nausea and great pain. But, I'm getting better.
Can't do much hard labor, but it's a triumph to sweep the kitchen at last. "Mein Fuhrer! I can walk!"
I've been thinking about the power releationships at this site. I think [redacted] has enough mojo to take Kos down. Dibs on replacing Meteor Blades. Everyone who uses "it's" instead of "its" as the possesive of "it" will be banned forever, including [redacted] who should know better. I've even emailed her about the subject, but she persists.
I'm going to have to have some serious conversations with doctors and family. I'm out here all alone, basically. I cancelled out my Helping Hands nurse as useless and an expense to Medicare. Turns out, they think of themselves as home hospice care. Screw that. In that case, they're not very good.
When do I give up on treatments? When I can't surf the intertubes nor go for Mexican food lunches, is my instinctive answer.
Things looked very good as late as August 22nd:
Went to the good Doc, Thursday. She was elated to find me reading an OZ book sent to me by JG in MD; triggered many childhood memories for her.
No new tumors, and I'm to start a new course of chemo (I'll have to have the drug's name written down, it was multi-syllabic) next Thursday. Another dose every four weeks. Sounds easy, to me. Perhaps I will even keep my hair.
Thanks for the rec.s on my comments. I do love round buttons.
Love,
Will
On August 31 I heard from Will for the last time:
My lines have fallen in easy/lucky places, all my life. Three times, I thought I was doomed, but bounced back. The latest episode is like a speed-bump, not a dead-end.
I mentioned to Arthur that I must have very good Karma, to have so often escaped disaster. "That, or you are saving up for a terrible next life," he replied. Fair enough.
Live long and prosper,
Will
Here’s a note from Jill.
The first time I heard from Will, he was asking if he could buy some of the greeting cards I make. Back then I thought he was just some guy with money to spare. He accidentally paid for the next set of cards twice and was very philosophical about it, wouldn’t let me send the money back, but something didn’t sound right. By this time I began to suspect he was, well, different. I’m slow on the uptake; I hadn’t read his comments yet. Gradually I found out he was very ill, had been in a mental hospital several times, was on Soc Sec disability, and hadn’t two nickels to rub together. And by then I knew I loved him to pieces.
He showed me in his emails just how brilliant and quirky he was, and his disease didn’t dampen his humor. My phone calls with him were an utter delight. He seemed to value my friendship very much, and I’m honored that he felt that way.
My last message from him was on September 9, my birthday.
Still in hospital, eight days so far. Should be home in a couple of days.
He died three days later.
Will's favorite song:
My dad was a bit of a musical tyrant. When he summoned the family to gather around the piano, he didn't mean "if you please" - and "Catch A Falling Star" caught his fancy. Lord, what glorious music we made!