Saturday, February 18, 2006

First post

It's been a complex weekend.

On TV is the delightful ImaginAsian Station (Time Warner NYC Channel 560), which oddly isn't listed in the TV Guide Listings. It's just my cup of chai, now playing Arabic hits from the 1960's, earlier Caribbean news and before that great clips of the Top 10 Romantic Bollywood Movies. For dinner am cooking sautéed spinach with garlic, a sprinkle of nutmeg (interesting that nutmeg has an affinity for spinach), spaghetti and tomato basil soup, all bought at the local Hell's Kitchen gourmet market, The Amish, worthy of a post on its own.

Tonight I need to write a letter to my surgical oncologist, requesting to see him sooner rather than later. I didn't go to my last appointment with him because I don't like him; don't trust him and the chemotherapist he referred me to was plain awful. But the pain in my abdomen is unnerving. Is it tumor? I need another MRI or to get nuked with another CAT scan, ugh. I'm putting off telling this oncologist that I want to see another radiation oncologist, not the one on his personal conveyor belt of cronies. And I hate not playing sheep with a doctor, it's no fun being confrontational in a doctor's office, even politely. So I'll write him a letter and drop it off at his swank office with the doorman tomorrow. Dammit, I hate being a scaredy cat.

Street vending season is now exactly a month away from my usual starting day of Saint Paddy's on March 17th. Just a few days shy of official Spring, usually drizzly but people have cabin fever by then, want something new, colorful, fresh to get out of winter drab. A month to organize new products to sell. Will it be art this year or handcrafted something? Haven't decided yet and am unsure with the upcoming radiation, whether I'll have the strength to vend in the Spring. It's so nice to NOT be on chemo, I'm soaking in the pleasure of not being in Taxol/Carboplatin induced bone-wracking agony, LOL!

I'd like to make a website for people with cancer, something practical, really useful for people who are in the daze of first being diagnosed and the subsequent terrified months, needing things spelled out with no Hallmark schmaltz, no cutesy fuzzy edges, no new age wishful thinking, no religiosity and not stupefyingly academic either. There is so much info out there on the web but it's scattered, biased, plain weird, dreary, either too simplistic or too complicated. I'm only 8 months from the day I was diagnosed and it's been a long haul. I wish there had been more practical sites out there but I haven't come across them so far, so I thought I'd make one and hope it helps others.

As a street vendor I never had reliable medical insurance. I paid Blue Cross Blue Shield an arm and a leg for five years and then when I miscarried, at 40 in 1994, and needed a D&C (dilation and curettage), Blue Cross charged me $1300 for a few hours in the hospital. I figured it was useless insurance and let it go, losing the $15,000 I'd already sunk into them. Little did I know that getting pregnant at 40 would set an awful cascade of hormonal imbalances into effect, needing an ovarian cyst removal surgery the next year, then early menopause and then cancer. Since I didn't have insurance, I ended up going to Amsterdam for the ovarian cyst operation, where it cost me $3000 compared to the $29 thou it would have cost here in the USA in a podunk hospital ($50 thou approx in a NYC hospital).

I felt very ripped off by Blue Cross Blue Shield and vulnerable as a street vendor, not having group insurance. In my experience insurance companies make it hard for an individual entrepreneur to have any medical coverage and overcharge when there is a medical situation which needs covering. In 1994, when I had that surgery in Amsterdam it was possible for anybody to go there and pay a very affordable amount for an operation, like $3000 for a week in the hospital, the whole surgery, all medicine etc. The BovenIj Ziekenhuis is a superb hospital, overlooking a 17th Century windmill. The name means Above The Ij River Hospital.

So I got a medical insurance part time job and that has covered most of the major expenses of my having cancer. A huge relief. Still I look forward to street vending again. It's been 20 years now that I began to vend, on May 2nd 1986 in fact, outside the Museum of Modern Art, on 53rd Street between Fifth Avenue and Sixth Avenue.

Time for distraction.
This afternoon I've been enjoying posting and reading in the Online Literature Forum, in MetaFilter's savvy, rowdy crowd. Found some fun URLs today, skeletoons (skeletons of cartoon characters), Japanese onomatopoeia here and also here, Japanese sound effects, Japlish, came across a favorite poem, a Nosty Fright by May Swenson and the Lark Ascending by George Meredith:

He rises and begins to round,

He drops the silver chain of sound,

Of many links without a break,

In chirrup, whistle, slur and shake...

For singing till his heaven fills,

'Tis love of earth that he instils,

And ever winging up and up,

Our valley is his golden cup

And he the wine which overflows

To lift us with him as he goes..."

I love "And ever winging up and up, Our valley is his golden cup and he the wine which overflows to lift us with him as he goes."

For years I've looked for writing by a man, Dr. Stephen Borhegyi, a kind and warm Hungarian archeologist, friend of my late father's, who influenced me as a child in loving pre-Columbian art, especially that of Colima. He worked with the Museum of Natural History in NYC and used to show me the wide, flat drawers full of potsherds and artifacts, let me hold them and showed me what to look for in the art he loved. He died suddenly in a terrible car crash in 1969 and I've mourned his death since then.

Hunted and couldn't find an online audio of Ralph Vaughan Williams' The Lark Ascending, wandered around online enjoying Real Librarians, Weird Words, Collective Nouns for Birds and other critters. Had fun with the Dialectizer, learned about curling. Now time to watch the tail end of the Winter Olympics. I've loved the Flying Tomato's sweet insouciance and rooted for the mischievous, outspoken John Weir.


Carl de Borhegyi said...

I can't believe you knew my father archaeologist Stephan Borhegyi. Who was your father? Please reply. I have created a web site dedicated to my father and his work, which I have followed up on. Please visit Breaking The Mushroom Code by Carl de Borhegyi

I hope to hear from you soon take care, Carl

nickyskye said...

Omg, how wonderful you've written me, the son of Stephan Bohegyi! What a delightful and unexpected surprise.

I am eagerly going to look at the website you created in honor of your father and will email you immediately.

Many good wishes,

Johnny Angel said...