Sunday, January 25, 2015

Obsolete Activities

As we get older, we expect to fall back a bit in keeping up with the latest changes. Maybe we don't really care about celebrity gossip or the latest i-Phone app, but I do believe that being current keeps you young. So I was surprised the other day when my son remarked that a large part of my day was spent in doing "obsolete activities." Wow! I'm not an early adapter, but I certainly don't view myself as the old curmudgeon in the corner who says "Bah, Humbug" to every new technological advance.  Gee, I pay my bills online and follow Facebook and twitter. Some of my routine activities revolve around tasks done for the Metastatic Breast Cancer Network, but here's the list:

1. My weekly trip to the post Office to mail packages or buy stamps. OBSOLETE!  You can buy stamps online if you must send things snail mail and packages can be picked up from your house.

2. My trip to the bank to deposit checks. OBSOLETE! I did ask the Chase teller if I could just take a picture of the check and send it to my account but he happily replied that it wasnt available yet for business accounts. After all, he added, soon we'll have to start selling milk here to get people to come in (and to keep him in a job!)

3. Buying said milk and groceries from an actual trip to the store. OBSOLETE! have I never heard of Pea Pod or Fresh Direct?

4. Watching TV for either movies or tv shows OBSOLETE!  When I could easily see the same shows on my computer.

5. Going to an actual movie theatre! OBSOLETE! See #4

6. Being one of the few remaining Netflix customers who waits for and anticipates the delivery of the red envelope. OBSOLETE! (But I do have the Netflix streaming option, too!)

6. Having the newspaper delivered each morning and reading the paper version. OBSOLETE! So much more eco-friendly to read your digital subscription on your iPAD or laptop.

7. Listening to books on CD in the car. OBSOLETE! I recently saw an ad for a new car that offered no CD player at all.

8. Printing out pictures and putting them in a picture frame. OBSOLETE! Get digital, lady.

9. Still loving email. OBSOLETE! Too slow and old school. Message me for goodness sakes.

10. Actually going to the library to browse and pick books. OBSOLETE! I have a kindle and I use the library website, but sometimes it's just nice to go there.

11. Going shopping. OBSOLETE! Tell that to all the other shoppers that crowd Route 17. Amazon may rule and online shopping is easy, but nothing beats seeing and touching the merchandise before you buy.

While the modern improvements make things easier, sometimes you wonder if the intent is to get us all to the point where we don't need to ever speak to another human being. (Good and bad there!) Can you add any Obsolete Activities of your own?

Sunday, January 18, 2015

I think it's called winter

Warning! State of Emergency! Stay Home! No unofficial travel recommended! Polar vortex! Wintry Mix! Black ice! Wind Chill below freezing! Single digits! Frigid!

To listen to the weather reports, you would think it was the end of the world, instead of just normal winter weather. It's supposed to be snowy, icy and cold. It's winter. Or, as the American Indians would say more poetically, it is the Moon of the Strong Cold or the Moon When the Snow Drifts into Teepees.

Growing up in upstate New York, I always loved winter. It meant sleigh riding down Devil's Hill, ice skating on Central Park Lake and building snow forts, with discarded Christmas trees as the roof. My mother always invoked the "We are pioneers" refrain, when the snow dump was heavy and we all were enlisted to help with shovelling, even though my father had various snow blowers over the years. He had a small electric "snow thrower" once where the cord would inadvertently get in the way and then you wondered how safe it was to have small cuts all along the cord. The biggest snow blower was an orange gasoline-powered behemoth from Sears that Dad kept on the landing going into the cellar. He would start the motor up inside and the whole house would shake. I never got involved in "raking the roof" which my youngest brother has fond memories of, but I do remember knocking down icicles that lined the roof all along our long driveway.


Today, because of black ice, Gary had to park his car and walk the last 2 miles to the hospital. Perhaps he was seized by that pioneering upstate spirit from his youth.  I, on the other hand, decided not to venture outside and felt imprisoned, looking out the windows and wondering when the icy rain would stop.  I guess I've lost some of that childhood excitement about winter and am just waiting for the Moon of Popping Trees and the Moon of the Red Grass Appearing. It's only mid January, but can the Moon When the Ponies Shed be that far away?

Sunday, January 11, 2015

52 Places to Go in 2015

I enjoyed reading this week’s special travel section in the New York Times: 52 Places to go in 2015. "Untrammeled oases beckon, once-avoided destinations become must-sees and familiar cities offer new reasons to visit.” Despite the author’s predilection for hyphenated words, I scanned the list and read the descriptions of places that interested me because they were among my favorites or had just come up in conversation or would have made my never-to-go there list.

As in previous years, the list was compiled by soliciting travel writers’ opinions and then debated and narrowed down by the Times staff. One of the main criteria is a change or event particular to the upcoming year which makes the destination more interesting. So Milan topped the list as host for the 2015 World Expo, followed by Cuba, for obvious reasons. The same logic applied for Tulsa (Yes, Tulsa, OK) because of the opening of several new art museums in the downtown Art Deco district including an Experience Route 66 interpretive center. I'm pretty sure we won't be traveling to Oklahoma to see a new art museum, but it does raise the question of museums in your own backyard. When was the last time we visited MOMA?  I’m assuming Schenectady, my old hometown, didn’t make the list because its year will be 2016 with the opening of the Rivers Casino and the continued improvement to the downtown area.

Gary, who had begun formulating his own Rust Belt driving tour including Pittsburgh, Cleveland and Detroit, was pleased to see Cleveland on the list (# 21) because of the LeBron James effect and some new restaurants. See it before the 2016 Republican Convention descends. I’ve already been to Cleveland, with the highlight the Rock and Roll Hall of Fame and a pizza place that a homeless man swore was the best pizza in the US. Antarctica, another of Gary’s favorite new places, did not make the list, presumably because shrinking glaciers are not that much of a change since last year.

On the National Park front, Yellowstone made the list because of $70 million redesign of the Canyons Lodge and Cabins and new sustainably built lodges along the river as well as new paths linking the village to the North Rim Drive. The bigger the pricetag, it seems, the more likely to make the list.

Two US ski resorts were included: Taos, NM, renovated with new owner’s hedgefund money, yet still retaining its alpine charm and Steamboat Springs, CO at 100 years old—the oldest continually operating ski resort.

Close to home, we have the gentrifying Catskills (Williamsburg in the mountains); Philadelphia (riverfront and bike share), and Lower Manhattan (9-11 Museum), which I could see making the K list.

European spots are always interesting. Old standbys of Rome and Paris cozied up next to surprising choices such as industrial Manchester, England, and out of the way spots in Portugal and Spain. Greenland is in; Iceland not so much.

Then my favorite category-international destinations to impress your well traveled friends:

Medellin, Columbia -- Not just a drug capital anymore.

Elqui Valley, Chile --Stargazing now before the inevitable light pollution intrudes.

Faroe Islands -- Admit it. You don’t know where they are, do you? A quick plane ride from Copenhagen for foodies only—fresh fish and local cheese.

Baku, Azerbaijan -- oil rich historic Caspian Sea city with modern architecture and luxury hotels including a Trump International Hotel. I believe my brother visited there on business 25 years ago in dicier times.

Kas, Turkey -- #52 on the list as an alternative to the still expensive Greek islands.

We had brunch today with my trendsetting son and his girlfriend who just returned from Durban, South Africa (#7) and Zimbabwe (#14), already getting a jump on the 2015 list.

So many places, so little time. I don’t think anyone other than travel writers will have 52 destinations this year, but looking forward to some interesting trips!

Sunday, January 4, 2015

Happy New Year!


I’m starting the New Year with new blood, a new medication and a new outlook. I’m hoping for more energy and less self pity! Thoroughly enjoyed the holidays and spent my 64th birthday out for dinner with Gary and son Eric. Eric posed the three birthday questions:

1. What are you most proud of that you did in the last year?

I could say climbing the Notch Trail in the Badlands of South Dakota in August.


Or I could say standing for 4 hours outside the Good Morning America broadcast in Times Square to be acknowledged by Rob the weatherman on October 13 National Metastatic Breast Cancer Awareness Day with my other cancer buddies.


But, I think I’ll go with a more serious role. On October 13, the MBC Alliance released its year long report on Changing the Landscape for Those Living with Metastatic Breast Cancer". Supported by over 30 organizations and led by a dynamic team, the Alliance is poised to make a difference and I’m so happy that I’m part of that effort.


2. What are you glad you never have to do again?

I’m not allowed to say Fantasy Football, even though I came in last in the Jersey Bowl league and had a frustrating year. I just want to win without having to learn too much about football-- is that asking too much?

So I am going with never having to go to another cave! I ended my speleology career with Wind Cave and Jewel Cave in South Dakota. Jewel Cave was pitifully bereft of ‘jewels’ as far as I could see and the fact that Gary’s great grandparents were part of the townspeople who clamored to protect the caves, just wasn’t enough of a thrill for me. I knew we were in trouble when the Park Ranger kept referencing other caves he had been to which were obviously more awesome to the point where I was ready to yell, “Well, we’re stuck in this stupid cave, so tell us something neat about it!”

I started as a kid going to Howe Caverns in upstate NY which even featured a spooky boat ride and it’s been hard to beat that formative experience. I’ve seen more than my share of caves- National Parks and private:

Luray Caverns (VA)--still remember the tour guide with the cute Southern accent comparing stalactites to Bugs Bunny’s carrots.

Oregon Caves (OR)–located south of Crater Lake.

Mammouth Cave (KY) – like entering a 3 story, rock hewn parking garage (no formations).

Great Basin (NV) -story of discoverer collapsing through to the cave while on his horse was the best part.

Wind Cave (SD)--discovered when unsuspecting hiker put down his hat and had it sucked into an opening of the cave—very strong draft.

Jewel Cave (SD) --no jewels.

So I’m hoping to pass on any trips to New Mexico’s Carlsbad Caverns. (Are you reading this, Gary?)


3. What are your goals for the upcoming year? 

It’s nice my birthday coincides with New Year's Day, so I only have to make resolutions once. It cuts in half the guilt of breaking resolutions, which according to reliable internet sources, occurs within the first month for 90% of the public. After much thought, I have resolved to:

· give up my Y membership (it’s become only a charitable deduction);

· refrain from joining any more book groups (although I love them and the 4th one is a facebook group, so does that really count?);

· and pay attention again to my sorely neglected blog.

Happy New Year to all!

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?