Tuesday, June 24, 2014

Eating Crow

How the mighty have fallen! No, I'm not talking about Verizon and Comcast. They seem to have weathered my assault on their respective fortresses without too much trouble. I am the vanquished heroine, forced to crawl back to Comcast after a tortured experience with Verizon DSL Internet and general grumbling from my summer guests that no TV would, in fact, be a problem.

So, I headed back to the local Comcast store and wondered briefly if they would give me a hard time for returning so soon. No worries. My account was still in a 'hold' category, which I bet Comcast secretly calls 'disloyal customers' with a note to never, ever offer them any deal again. Maybe they have a sense of humor and just label us  'gotcha'--they are pretty sure you'll be back. No slinking into the line required, just the usual pleasantries with the customer service rep, while she efficiently scanned what seemed to be massive amounts of equipment to self install. When I questioned why the 2nd TV receiver box was now bigger than the TV itself and had just one month ago been a 3 by 3 adapter box, she swapped the larger one out, scanned, rescanned and asked me to sign three different receipts. A nagging thought - was this going to be a problem?

"You're all set," she said.
"There are no cables in here," I responded, poking through the boxes.
"Oops-are your TVs HD or older?"
"Old, very old.."
"Here you go." She proceeded to toss in an impressive number of black cables.
"Thank you for choosing Comcast."
Hmmm..I mused on that word--choosing?! Was there a choice?

It's amazing how the equipment changed in just over 30 days.
Here's the handy bag of goodies I received:
Nice for grocery shopping later
The challenge of the easy self install begins:
Only one trip back to the Comcast store. Yup, the new receiver hadn't scanned correctly. A quick rescan and a bonus gift of longer cables thrown in to sweeten the deal.
"Thank you for choosing Comcast."  Again?!

At home: success!

But a few leftover parts:

Sunday, May 18, 2014

Where's my clinical trial?

reblogged from http://mbcnbuzz.wordpress.com/2014/05/17/wheres-my-clinical-trial/

Where’s my clinical trial?

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50th anniversary of ASCO and visiting cancerprogress.net reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?

Friday, May 2, 2014

I showed them!

There will be no TV at the shore this summer. I wish I could say that this was done for high-minded reasons. Vacations should be a break from your normal routine. Summer is for relaxing and enjoying the beauty of the outside world. Read a good book. Sit on the porch, listen to the birds, sip your morning coffee. Enjoy a beautiful sunset. Remember back to the good ole days, when there was no televison at the bungalow and we never gave it a second thought.

These are all good things. But, alas, the decision to not have TV involves a more complicated tale. Comcast serves the Jersey shore and with all the news stories about the conglomerate merging of Comcast and Time Warner, I already had a chip on my shoulder when I called Comcast to restore my full time service after the winter hiatus. I also violated my rule of always calling back at least twice or even three times when dealing with customer service because it's always a different answer. 

Comcast or Verizon are the only choices for internet service at the shore. Suffice it to say I switched to Verizon very huffily before I made the second call to Comcast. Verizon only has the Dish for TV and who wants to be bothered with that? When I relayed the story to Gary in excruciating detail... then he said....and I replied...and he checked with the supervisor...and I did a slow burn...., he merely raised his eyebrows and refrained from comment. (We have been married a long time)  I ended with the conclusion that we would need more than the basic package anyways, which was ridiculously priced and I could see from the slight downturn at the corners of his mouth that he wanted to whisper, "What about ESPN?"  Memories of my mother's admonition echoed in my head: "Cut off your nose to spite your face." I prefer the more modern rationale from my son. "Mom, TV is obsolete--you can stream everything online."  Let's hope the DSL delivers the promised speeds!

Be sure to stop by and see me this summer.  Just be prepared for the simple life. Cards, anyone?

Saturday, January 25, 2014

St Maarten - Not a K style vacation


Everyone deserves a brother and sister-in-law like mine and a vacation to St. Maarten that was a real treat. I felt relaxed and pampered, but somewhat puzzled initially.

Don't get up before 9 am?
No sports gear needed today?
Relaxing by the pool, reading and eating constitute a full day's activities?

Judie at the pool

Simpson Bay Beach

Our lunch and dinner chauffeur. Joe hasn't driven a car this small since the little blue Vauxhall in 1962!
Happy and relaxed on Orient Beach (decided not to go topless!)

This was not a K-style vacation, but it's hard to argue with a constant 81 degrees, gentle trade wind breezes and a friendly and beautiful island.

I'm afraid I failed in a few categories: casino gambling (non-player) and adventurous eater (no Caribbean lobster, thank you). I was sure there would be retaliation from the island gods if I tried eating this big guy.

My Wednesday flight home was cancelled due to the New York snowstorm, but who can complain about an extra day in paradise? Time to finally check out the famous Sunset Bar & Grill, perched at the end of the runway of Queen Juliana Airport on a narrow strip of beach directly under the flight path of incoming planes.  (Now why hasn't Jersey thought of this--a viewing platform near the NJ Turnpike and Newark Airport?)

A little Caribbean music to set the tone
It was an event not to be missed, with the cafe crowd putting down their cocktails and grabbing their iPads and camera phones, as soon as a plane appeared on the horizon. Would it be a big commercial 747 or one of the many smaller private planes and island hoppers?

Some of us got too excited and missed the shot:
Plane's tail in upper right corner--really!
Uh-oh...wrong direction

 Couldn't take the pressure, so I switched to video:

Wish I could take credit for this great shot:

Judie's photo

Many on the beach got up close to the fence, undeterred by this sign:

Here we are in front of the Surfboard sign that listed the incoming flights. All the ones in pink are cancelled flights.

Farewell to the island life: 

View from the plane
Sunset over Simpson Bay
Thanks Joe and Judie!

Thursday, January 9, 2014

New Year Addiction

We got a Blu-ray dvd player for Christmas, noted in one article I read as making the top 10 list of obsolete gifts for the 21st Century. So, we are a little behind the times. Of course, we refused to toss out our old dvd-vcr which can still accommodate legacy videotapes. Remember them?

One of the perks of the Blu-ray is it enables Netflix streaming. My son Eric set it up when he was home for the holidays. We were both instantly incapacitated, strapped to our lazy boys with a streaming IV. Midway through our second movie, there was a loud scraping noise outside. Was someone breaking into the garage, backhoing the front lawn, dragging our mailbox down the street under the tires of an 18 wheeler? We'll never know.

Eric, look out the window and see what's going on.
No, i'd have to get up and move the curtain. You do it.
It's getting louder, but I can't move.
(screeching, grating noises intensify; we brace ourselves for a direct hit on the house)
Wait a minute longer. (waiting, waiting, pause on the remote)
OK- seems to be diminishing.

The pull for watching past tv series is even worse. At least at the end of a movie, you have to search for another one, although your Netflix list appears and other suggestions are also displayed. Gary decided to tackle the 62 episodes of Breaking Bad. Last night I wandered into the family room at 11:30 pm, as he was finishing episode 3. "Don't you have to go to work tomorrow?" I asked, but his eyes were glazed over. He stared trancelike at the countdown clock ticking away on screen. I leaped for the remote as if it were a grenade ready to explode and saved him from getting sucked into episode 4. Whew! with only 2 seconds to spare.

In past years I had a now seemingly quaint ritual called the Quad Challenge, where I would attempt to see 4 movies at the 16-plex on one movie ticket. Part of the fun dissipated when I realized that I didn't need to hide in the ladies room or change hats to disguise myself. Theatre employees really didn't care how many movies I snuck into. The tantalizing appeal of beating the system was gone when the guy who swept up the popcorn asked for the third time, "Well, how did you like this one?"  But, the real end to the challenge was the insignificance the contest had become. So you were in the movie theatre from 9 am to 7 pm?  I watched streaming movies for 3 days and never got out of my pajamas. Top that.

Friday, November 15, 2013

Did Mr. Wright Get It Wrong?

Don't misunderstand me -- I love Frank Lloyd Wright, the father of American architecture, the creative genius who championed an "organic" style, blending his Prairie School houses into their surroundings, melding the inside and the outside, using clean horizontal lines and beautiful art glass windows, with even the furniture matching the home's design elements.

I've visited Taliesin and Taliesin West, his home and studio in his native Spring Green, Wisconsin and his adopted winter encampment in Arizona.

I first saw the Guggenheim Museum when I was in high school and stood a long time looking up to the ceiling with the circular levels, reminiscent of nature's take on the inner structure of a snail shell.

I've read the best selling Loving Frank by Nancy Horan and marvelled over Wright's larger than life personal saga--- three wives, one 'love of his life' mistress, a horrific fire and murder scene at Taliesin, bankruptcy, rebirth, a life spanning almost 92 years.

His own parties were legendary. He died in debt but left a legacy of a new way of looking at architecture and his often quoted "Take care of the luxuries and the necessities will take care of themselves" neatly summarizes his vision of life. 

But, I had never visited homes he built for other people until this past weekend. Pleasing the customer was not part of the deal and his projects routinely ran over budget - it was only money, after all, and more importantly his client's money. Clients were only too eager to comply, since owning a Frank Llloyd Wright house was the newest status symbol and Wright's magnetic, persuasive personality was a force of nature.

South view of Martin house
During a wonderful weekend with college friends, we visited the Darwin Martin House in Buffalo, a complex of five buildings begun in 1903 for a self made man, Darwin Martin.  Buffalo then was the 8th largest city in the US, situated at the end of the Erie Canal, booming with business and boasting more millionaires than any other city. Martin was a businessman with Larkin Soap Company and also solicited Wright to build the Larkin Administrative Building, Wright's first commercial building.

Darwin Martin became enamored with FLW and they considered themselves friends, even after the preliminary smaller house he built for Martin's sister came in well over budget. The next phase included a much larger house for Isabelle and Darwin Martin on the same one acre property with some truly beautiful features. Wright considered it years later to be his "opus" and the complex "a well-nigh perfect composition."

The charismatic Mr. Wright had convinced the Martin's to sell their Victorian home and move to this open space in the Parkside section of Buffalo. The family moved into the new house in 1905 and the last workmen left in 1907. That must have been a trying two years. With a controlling personality that would put even Steve Jobs to shame, FLW was notorious for requiring that clients sign a detailed (and unenforcible) agreement that they would not change even the placement of his originally designed furniture in the house.

View from the smaller Barton House
Our two hour tour encompassed three houses: the middle class smaller home of Wright's sister (Barton House), the big Martin house and the small gardener's cottage. Our docent was wonderful, knowledgeable and enthusiastic. While I marveled at the beauty of the house-- the detailed, patterned windows; the arresting view from the vestibule down a long hall to the Greek statue of Nike in the conservatory; the open floor plan, uniting the library, living room and dining area by means of a framed wood ceiling; the fireplace decorated with delicate glass pattern; the unusual half brick that dominated both inside and out, I kept asking myself one question.

What would it be like to live here?
We don't know if Darwin and Isabelle ever complained about the reality of living in the house. Can you imagine Darwin back from the soap company after a long day and Isabelle yelling down from the bedroom:
D.R. chairs; corners of the table had elaborate light fixtures (not shown)
Is that you , Dar? Crap, my back went out again, so I'm stuck in bed, staring at these freakin' wisteria windows everywhere I look. I blame those straight backed chairs -- they're killing me. I had the ladies for lunch. Gertrude couldn't find the front door and Mamie accidentally knocked the corner table chandelier off not once but twice during lunch. She's a klutz, but, really, you can't even pass the food with those 2 big lights in the way. Believe me we needed them today, though. So cloudy and the house so dark- depression city.

Highly unlikely conversation, but I could see from our tour group's questions that I wasn't the only one imagining living here.

Reception room with those infamous barrel chairs! 
Why is the furniture so small?  asked one young man.
(and uncomfortable looking, he didn't add)
It's not really, said our tour guide. Maybe people were smaller then. We had yet to supersize everything in America from our food to our furniture. Nothing like a cozy barrel chair.

Why are there no closets?
Mr Wright thought they only encouraged clutter. The master bedroom does have a 'dressing room' and he conceded to add a closet in the guest room suite.
(Who knew the minimalist Mr.Wright could have had the first Declutter 101 reality TV show?)

Why is this vestibule have such a low ceiling? I'm claustrophobic.
You're supposed to be! Mr Wright was 6'3" himself and used the height of a room to encourage people to move out of the entrance hall and into the more inviting living area.

The hidden bookcases
If Mr. Martin loved to read, where are the bookshelves?
Our guide pulled open a door to what looked like a solid wooden support. Voila! A book shelf! Push it open and there was another behind it--along with the radiators for the house.

As the chilly Buffalo wind whipped around us, I heard: Does anyone else wonder why an open covered pergola walkway would be an ideal choice for this weather?
I guess we've never experienced a hot Buffalo summer.

Where was the front door?
Mr. Wright believed your house was your private space, so not just anyone should casually come knocking at your door. They'd have to look a bit or know where they were going.

All in all, a thoroughly enjoyable afternoon and a deep appreciation for Frank Lloyd Wright's vision and artistry, but I have to admit I reexamined my own house critically when I got back to NJ.

Uh, oh, a generic center hall colonial with those double hung windows that Wright described as looking like 'guillotines.' Big kitchen and bathrooms which Wright dismissed as unnecessary. (Oh to have a serving staff to deal with the banalities!)  My kitchen does have a Chicago window (picture window, flanked by matching casement windows) and looks out on a wooded backyard, which FLW would have approved. But the house seems proud of its comfortable clutter and I can't imagine it any other way. I slumped into my favorite la-z-boy, popped up the foot rest and sank deep into my own definition of luxury. Ah, the plebeian lifestyle has some merits!

PS: Thanks to my good friend Anne, whose own hilarious insights on living the FLW style, gave me the idea for this post.

More pictures of the Darwin Martin House Complex:
The conservatory looking back toward the main house
Nike, the Winged Victory of Samothrace in the Conservatory

Dining room in Barton House-FLW loved those chairs!
Note wisteria windows in Reception room of main house

Charming Gardeners Cottage

Overview of the complex

Saturday, November 2, 2013

Crazy Dreams

I had crazy dreams last night. Could it be the jalapeno poppers I ate at Hermano Carlos's party? Or was it because I slept with the window open? Or am I just decompressing after a very long month of Pinktober?

In any event Gary and I were moving out West and met people with a big black, furry Pyrennes dog whom we fell in love with. (a subconscious wish?) They gave us the dog and the house they were living in, which did turn out to be a nightmare--water pumping out of the floor in the kitchen and living room which we furiously mopped up, like the Mickey Mouse character in Fantasia, only to have the water continue rising. A man with ulcerous, bleeding arms appeared at the door to help. We suddenly had some unspecified children who caused a fire by using a vacuum cleaner in the bedroom. These were, of course, not our real children, who wouldn't have been familiar with such a machine, at least while they lived at home.

No, I hadn't been watching Halloween horror movies and the 10 trick or treaters who appeared at my door were dressed like princesses, hobos and super heroes, not zombies.  But I did watch some of the Sandy one year anniversary news coverage. We are having the basement recarpeted, after the last minor seepage a few years ago precipitated a major overreaction on our part of ripping up carpet and exposing a decidedly ugly and stark cement floor, gray with splotches of red paint.

I am trying to "move on" in a sense, creating more balance between working for Metastatic Breast Cancer Network and living every day to the fullest. I started with a reappearance at the Y, where my ID was so old it didn't work anymore. One yoga class under my belt so far. I wonder why that didn't appear in my dream?