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.