living with cancer - watchful waiting

I am a patient man but when waiting for a medical procedure to be started I don't have a lot of experience with this, so I talk to other people and scan the internet.

For the second source, I am more cautious; don't want to get caught up with laetrile [apricot pits or B-17 mega-doses] or psychic energy bracelets, since I suspect that mucking about with experimental therapies [the former] and placebos [the latter] may be a bit late in the game, and, besides, does B. even want to consider then now?

But treatment hasn't started, in large measure due to other complications that might be minor when having a broken leg recast; but major when considering the potential effects of chemo if, say, one's immune system is already compromised.

So I am drawn to learn more about the idea of "watchful waiting." Watchful waiting is not a euphemism for doing nothing, but rather it is the decision to delay treatment in favor of careful monitoring for the progression of cancer. Watchful waiting may also be referred to as expectant management, conservative management, observation, or surveillance.

I realize that some of the sources I have looked at identify cancers other than esophageal cancer, but I suspect there is wisdom to be gleaned from these other sites as well.

Cancer Research UK notes that

"...It is hard enough to cope with a diagnosis of cancer. If you then have to wait a few weeks or months to have scans, or begin treatment, you are likely to feel very frightened and frustrated. Many begin to worry that the cancer will spread during this time. But cancers usually grow very slowly and this is not likely. Most cancers develop over many years and do not show up on a scan until they have been growing for some time. So waiting a few weeks for a scan or treatment does not usually affect how well the treatment works.
     You will start your treatment sooner if your doctor feels your treatment is urgent. Your doctors would not make you wait weeks for treatment if they thought it was going to reduce your chance of being successfully treated.
     It may help to let your doctor know if you are worried about waiting for your treatment. It is likely they will be able to reassure you that although waiting a few weeks for treatment is very hard, overall it will not change your outcome."

Of course, on weekends, the specialists are not likely to be around to reassure you. And the on call doctor may or may not know anything about your case, condition, or frame of mind.

As one sitting beside the bed, the angst remains high as well. But, as the folks say, you watch and wait. I pray for an end to the set backs.

---

RESEARCH SOURCES: 1- Cancer Research UK ~ Waiting times for tests after diagnosis; 2- Prostate Cancer Treatment Guide ~ Watchful Waiting Description; 3- The Wandering Visitor ~ Are you the on-call doctor?

small businesses - indy booksellers

THIS IS AN UNSOLICITED PLUG!
Printed Matter, Inc.
195 Tenth Avenue, New York, NY 10011

---

My online pal and art-chapbook impresario Billy Miller turned me on to this bookstore. Printed Matter promotes itself as "the world's greatest source for artists' publications" and after seeing their storefront in person, I may have to agree.

From their website's description:

"Printed Matter''s mission is to foster the appreciation, dissemination, and understanding of artists' publications, which we define as books or other editioned publications conceived by artists as art works, or, more succinctly, as "artwork for the page." Printed Matter specializes in publications produced in large, inexpensive editions and therefore does not deal in "book arts" or "book objects" which are often produced in smaller, more expensive editions due to the craft and labor involved in their fabrication."

I was able to make a visit last June, and found myself in awe at the variety of creative and original chapbooks on sale in front, but that delight paled after seeing [only for a moment] the second half of the store with a library-like tableaux of art books, most of them of fairly recent publication.

Don't go there seeking those glossy "livres de luxe" [often printed in China or Italy] that sell in mass market booksellers as lures to get you in the venue.

Printed Matter’s founders subscribe to the idea of the artist''s book as "artwork for the page," focusing on publications produced in editions of one hundred or more. They envision these publications as democratizing ~ and inexpensive ~ artworks that could be consumed alongside the more traditional output of paintings, drawings, sculptures or photography. The art books at the shop are not simply catalogues of pre-existing work, but works in their own right.

The organization maintains a public reading room where over 15,000 titles by 5,000 international artists are available for viewing and purchase. In addition to being a wholesale and retail distribution hub for artists’ books, they offer a free consulting service to libraries, art institutions, and art professionals involved with artists’ books throughout the world.

I'll go there again. First I have to build a new set of bookshelves, maybe even a new room on the house; then increase my line of credit on the mortgage/equity; then thrash that out with Bruce... because even if the individual volumes are inexpensive, I might want to buy many.

Printed Matter is also the sponsor of the NY Art Book Fair, scheduled for November 5–7 at MoMA PS1, Long Island City, Queens. Free and open to the public, the Fair hosts over 200 international presses, booksellers, antiquarian dealers, artists and publishers from twenty countries, offering the best in contemporary art book publishing.

---

IMAGE CREDITS: 1- Printed Matter storefront Le Cool Cats Blog; 2- Jillian Lauren's Blog, an ongoing monologue from a decidedly interesting author and mom.

original work - Time Machine

photos - Holiday Hill Resort

My two favorite picture captures from the AFSCME Picnic

events - AFSCME picnic

Connecticut's Senatorial hopeful Richard Blumenthal was at the AFSCME Council 4 picnic held at Holiday Hill, in Bethany. We spoke for almost two minutes. I had not known he was going to be there, but was glad to have met is acquaintance. He said he knew my name; plausible since I've gotten mail from his office alerting me of situations about which patients had written him.

But it is the picnic itself that I found more intriguing.

It terms of ethnic mix, if the attendance (which was pretty impressive in size) is typical, Council 4 members are pretty diverse. Yet I could not help but be dismayed that people flocked together at tables mostly by apparent ethnic groups.

When I asked one of the folks from the New Britain office (she was Latina), the guess was that, encouraging diversity notwithstanding, people still hang with those they feel they know closest.

I should also note that the seating was in contrast from folks milling about, and ~ later ~ dancing. Especially dancing; on the floor folks mixed and matched with greater ease.

Had I known more about the location before I'd gone, I definitely would have brought a swimsuit.

The locale was idyllic in appearance; the food tasty and plentiful.

The workers, mostly summer-job college kids, were not members of any union local themselves. Small Irony.

historic events - MLK's I have a Dream Speech

I say to you today, my friends, that in spite of the difficulties and frustrations of the moment, I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."

I have a dream that one day on the red hills of Georgia the sons of former slaves and the sons of former slave owners will be able to sit down together at a table of brotherhood.

I have a dream that one day even the state of Mississippi, a desert state, sweltering with the heat of injustice and oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today.

I have a dream that one day the state of Alabama, whose governor's lips are presently dripping with the words of interposition and nullification, will be transformed into a situation where little black boys and black girls will be able to join hands with little white boys and white girls and walk together as sisters and brothers.

I have a dream today.

I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight, and the glory of the Lord shall be revealed, and all flesh shall see it together.

This is our hope. This is the faith with which I return to the South. With this faith we will be able to hew out of the mountain of despair a stone of hope. With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

This will be the day when all of God's children will be able to sing with a new meaning, "My country, 'tis of thee, sweet land of liberty, of thee I sing. Land where my fathers died, land of the pilgrim's pride, from every mountainside, let freedom ring."

And if America is to be a great nation this must become true. So let freedom ring from the prodigious hilltops of New Hampshire. Let freedom ring from the mighty mountains of New York. Let freedom ring from the heightening Alleghenies of Pennsylvania!

Let freedom ring from the snowcapped Rockies of Colorado!

Let freedom ring from the curvaceous peaks of California!

But not only that; let freedom ring from Stone Mountain of Georgia!

Let freedom ring from Lookout Mountain of Tennessee!

Let freedom ring from every hill and every molehill of Mississippi. From every mountainside, let freedom ring.

When we let freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last! free at last! thank God Almighty, we are free at last!"

---

Speak your mind about this historic day.

culture of violence

distractions - Oktapodi

Two octopuses help each other in their escape from the grasps of a stubborn restaurant cook. However, even after overcoming insurmountable odds to reunite, their fight to stay together is not over.

quiet time

There have been so many things going on right now ~ federal government overseers at work; near to daily trips to the hospital to visit; updates from my brother on the west coast; arts proposals to join or be more involved with shows; moving "stuff" for people [the dubious rewards of owning a pick up truck]; town meetings; that what I sometimes wish I had more of was some quiet time.

My partner doesn't thinks so; but instead stews at home waiting for me to show up and visit. That kind of home-coming doesn't usually bode well, either. He notes, well, you've been alone in your truck driving everywhere.

But driving alone in my pick-up truck is not quiet time. ...there's too much taking place I need to pay attention on the road ...thank God I'm not a texter.

The other day BillP commented that I was able to sit for long periods of time without moving. I agreed. That's what I want to do when I'm alone.

I'm thinking more of time spent with no one but the elements [and the occasional building, such as the one seen here] to let my head clear out psychic excesses.

It's hunting season soon. Maybe I need to find a good place for a treestand, and not even bother bringing the bow.

travel - Meriden, Ct

On the way from New Haven to New Britain.

living with cancer - communications at the hospital

The patient should have an opportunity to ask questions to elicit a better understanding of the
treatment or procedure, so that he or she can make an informed decision to proceed or to refuse
a particular course of medical intervention.

This communications process, or a variation thereof, is both an ethical obligation
and a legal requirement spelled out in statutes and case law in all 50 states.
American Medical Association / Web page describing "Informed Consent"

---

Last week Bill developed what might have been a "mild" case of pneumonia, however "mild" a lung infection can be at the same time one is hospitalized for cancer.

I suspect he even knew ~ intuitively ~ that he had contracted it. He'd been coughing some one day last week when I visited. We went downstairs, sat in the yard between buildings one/two and the older complex, and he mentioned something about getting an infection.

He did not go for radiation/chemo on Friday. Sat the weekend anticipating going Monday but when that came nothing happened. Oh, no, he was moved to a new ward. We knew that was coming.

I called early this morning to find out what was going on. Today, he learned at 1130 that he was not going for treatment again today. No reason provided. He got anxious. Over the phone I heard someone telling that someone from oncology was coming to see him.

Still with no answers I left work to see what was going on. As I was pulling into the VA Center, a call came from the oncology team. He had pneumonia. Yes we told him. He ought to have known that we won't treat him while he's getting antibiotics... but not to worry since the growth is slow and this should be resolved by the end of the week [meaning, I suppose, that treatments start next week].

One of the most frustrating things to deal with is not knowing. As I drove toward the center [made it in record time ~ less than half an hour] I kept thinking the worst. This is a repeat concern. Bill keeps asking to be told what's going on. So do I.

Might have to just move in and park myself in order to know what is going on.

Again, all that said, people working here are not uncaring; too busy sometimes, perhaps ~ which can happen at most any hospital. Yet the docs don't communicate their knowledge until after the frustration tipping point. Don't they get it? In the process of being an informed consenter getting the details from the docs does not seem to be too much to ask for.

---

IMAGE CREDIT: Lungs Home Health which touts iteslef as "the UK's leading provider of drug testing products, pregnancy tests, ovulation tests, DNA Paternity Tests and home testing kits. The image was found at What Are Lungs?, a webpage put together by Nandini Thogarapalli, a grade five student at Dr. E.W. Coffin School, Calgary, Canada, as a science project that looks at lung cancer.

natural phenomena - salt water marine life

This is one of BillP's favorite pictures; one of mine, too.

Taken at Mystic Marine Aquarium, mostly clownfish and anemones. I took it indoors, using available light. While there is some reflection off the outer tank glass, very little is evident, even when the image was pushed and printed at 20x30 inches. What there is does not detract.

When we went to the aquarium, Bill said that he thought he might like to be a manta ray when reincarnated, gliding about unimpeded by sharks.



I pray that it takes a long time before he's able to pick up on that option.

frenzy - Islamophobia

PILGRIMS
can't help but be disappointed and chagrined watching bigots and fanatics hogging the airwaves ~ and getting ~ attention to publicize their own massive levels of ignorance and stupidity while prattling on about the so-called "Ground Zero Mosque" which will be neither at the former World Trade Towers site nor a mosque.

Inspired, in part, by a growing anti-Muslim sentiments in Europe, the loosely aligned 21st-Century know-nothing Tea Party "movement" has also spawned its own versions of fanatical vitupertates, such as extremists like Pamela Geller.
The ideological flames then fanned by corporate media giants who think they stand to gain by war profiteering [GE owned NBC] or megalomaniacal egotism [Rupert Murdoch's FOX].

I am not Muslim, but I was fortunate enough to learn about Islam as a teenager; first from a Catholic School chum who, taught by some pretty strict nuns, became enamored with Islam. He introduced me to the Meaning of the Glorious Koran penned by British scholar Mohammad Marmaduke Pickthall. Later, I came across what I thought to be a more lyrical English transliteration ~ The Koran Interpreted, by A.J. Arberry, a renowned Orientalist and Professor of Arabic. Both translations have their shortcomings with regard to mistakes of omission and mistranslation, but these two were invaluable in helping me first to be exposed to Islam, and, later, to be more appreciative and understanding of the beliefs of literally billions of people on the planet.

living with cancer - day one chemo/radiation

Getting started on cancer treatment is a bit like driving into a dark tunnel with no directionals.

I don't know if my friend had his first treatment today. Nursing staff in the afternoon they can't say for sure that he went to the cancer center; the nurse only knew that he was on the ward when she came on duty.

A different nurse, later on, reports that his ride didn't pick him up on time, but remains equally uncertain if he'd gone today for treatment [Shouldn't that be in the record?].

What is certain is that he was moved to a new ward, with nurses who don't know him nor his quirks and eccentricities.

I expect I'll hear a rasher asking "...is it bark or bite" when he lashes out loud and verbal. [It's bark, basically] He's in pain! He's got esophageal cancer! ...and nobody's taking the time to either explain all this or provide a bit of TLC. Surely nursing is more than reading blood pressure gauges and finding another vein to stick.