Green drinks and events NYC

This is a very up-to-date, fun working crowd of professionals to have drinks with once a month on Tuesday nights.

Green Drinks NYC
WHEN: Tuesday, Nov. 11th from 6-10pm.
WHERE: LQ New York (551 Lexington Ave. at 48th St.; tel: 212-593-7575)
By subway, take the 4,5,6 to Grand Central.
COST: $10 Donation; $5 for NBC Universal and CERC newcomers

The numbers of Green Drinkers are swelling, at the same time their mission rapidly expanding to encompass participation in a lot of ongoing green events, some academic, some just fun. See their home page for activities.

Sunday, November 16th - Sunday, November 23rd
At 8 pm on Sunday, November 16, the networks of NBC Universal will launch Green Week - a weeklong commitment to highlighting green issues and content across TV and digital platforms. For more information, including program schedules, visit www.greenisuniversal.com.

Daily through August 16th, 2009 from 10am - 5:45pm
Climate Change: The Threat to Life and a New Energy Future at the American Museum of Natural History
This major new exhibition explores the science, history, and impact of climate change, and illuminates ways in which individuals, communities and nations can reduce their carbon footprints.

photos for a cloudy day

Sometimes it's more interesting to own a camera with flaws, such as a brownie, which back in the day had light leaks in it's plastic lens that caused beautiful blurry artifacts at random in it's black and white images, without one's ability to control them.

This Blackberry Curve camera has quite it's own personality, with a total lack of clarity and an inability to gather up light, causing a lack of contrast and dense rich saturated, ham-fisted images!

Playing directly upon these perceived weaknesses, one can bring them to the forefront and further diffuse them with a photoshop filter ('diffuse glow'), using mostly just color to create rich saturated quiet dreamlike snapshots.


Love, E

Farewell Tibifarnib (Zarnestra) chemotherapy drug and Dexamethasone (Decadron) corticosteroid

It must have been the switch to my part II chemotherapy drug regime on October 16 - phenomenally complicated to the point where I swore I was ready to give up by the second cycle on October 30. The nausea was insane, I couldn't swallow for days, I rarely got out of bed and I had non-stop crying fits. My neighbor told me that I had looked like a zombie at that time. It was a lot worse than part I had been. I only ate ice pops and a bottle of oxycondone pain killers.

I was going off the deep end texting my friends to please come visit me, but I couldn't talk on the phone, since I couldn't really swallow. So I just yelled at my friends over email all kinds of stuff that I now will have to go back and apologize for, I suppose.

I had already been kicked out of my breast cancer psychiatry program at my hospital, since I needed more care than they could give me, which meant both a psychotherapist and a psychiatrist. (And if they could have had their way, it would have been arts and crafts and group therapy and lunch everyday in a day program for me as well. Unfortunately, I don't have time for the leisure of such a program, since I have cancer appointments!)

By the time I was assigned my new psychiatrist, I was carrying a clinking shopping bag full of medications to show him what I took each day. "Dexamethasone?", he said. "Don't you know this makes women in your age group go insane?"

"Well, I knew it was bad, I cited it in my blog, but I thought it was okay as long as you didn't take too much of it", I said.

"How much do you take?" he asked.

"Well, starting with part II, I take it every morning and every night..."

There are times when it is just not necessary to have extra special perception to know what someone is thinking. I could just look at the top of my psychiatrist's head as he looked down at the floor and see the word "D U H".

So I decided not to take Dexamethasone (Decadron) - a corticosteroid - anymore, and my very intuitive nurse practitioner suggested the same thing the next day when she saw my condition - before I even mentioned that that the psychiatrist mentioned it. (click this link to read more about this corticosteroid).

Then, by the time I got to the second cycle on October 30, my nurse practitioner gave me a lecture on how the point of the chemo was not to kill me, but instead, keep me alive. I wasn't looking very alive at the time, I guess, so she discussed discontinuing the clinical trial chemotherapy drug, Tibifarnib (Zarnestra). That surprised me, since I had thought that I would negatively influence the statistics for the clinical trial if I were to quit.

Since the drug had worked wonders shrinking my tumor to zero, I was loathe to quit and possibly mathematically mess up other women's chances of trying the drug.

But my nurse explained that's not how the math plays out. Instead, if I become a statistic who could not tolerate the side effects after 14 cycles out of the 16 cycles in the course, I would still remain forever a participating member of the trial. The benefits I experienced would still be documented.

And so I thought about it for five minutes and stopped taking Tibifarnib (Zarnestra).

I still have to complete cycles 15 and 16 of my standard chemo drugs, Doxorubicin (Adriamycin) and Cyclophosphamide (Cytoxan), since my nurse explained that these are the drugs that prevent the cancer cells from returning. Those are not exactly a picnic. They are scheduled for November 13th and 26th.

Things have changed for the better, as we have a new President-elect, and plus I am walking around again and eating peanut butter and jelly sandwiches. As you can see, I am even writing again. This blog post brings me to the end of the worst part, and soon I'll have nothing left to write about! December will bring the end of chemo and a lot of sophisticated procedures cleaning and documenting the disappearance of my tumor. I need not even explain them, as they will be exact repeats of the imaging procedures I had before the chemo. I plan to make a slideshow out of the radiology images so we can compare them side by side.

Love, E (happy guinea pig)

P.S. My schedule is always at the top of my blog, click on my treatment calendar

Election 2008 mapmash

October 28, my favorite day ever

I picked out this cap in the Bronx especially to wear to my surgeon appointment today! It has a brass skull tooled onto to it. I think it brought good luck! (I will be happy to lend it to you for your surgeon appointment anytime).

Love, E.

slideshow: chemo countdown

Click the image below to launch a slideshow of a few days of chemo countdown.





My new chemo regimen part 2 began on October 16. Once every two weeks instead of once per week. Some delightful drugs: Doxorubicin (Adriamycin) , and Cyclophosphamide (Cytoxan) starting Thursday, October 16 for four cycles every other Thursday ending at Thanksgiving. Plus neulasta, a growth factor to counter the side-effects of the chemo, which lower your white blood cell count, plus pain killer to counter the muscle pain of the neulasta, plus Zarnestra, the clinical trial drug, the one that I've been taking all along.

Wish I could talk on the phone with you and return your calls, but I don't feel like it. The nausea is insane now, and I am not interested in eating any longer. I still like tea and cornflakes, though. It would be nice to have visitors come see me nevertheless, even though I don't talk much, we could watch TV (a new habit I picked up in the hospital).
Love, E

October is Breast Cancer Awareness Month

Everyone is sending me links, and I would be remiss not to post them, since a lot of thought, research, participation and work went into this massive public health initiative! So thanks for all the links, and here is a selection of them for you: (I'm not posting any silly shopping links, they are so confusing, nor am I turning my blog pink, as suggested by many, since I tried to re-code it in pink and it crashed, duh.)

In The Family
A new documentary about BRCA1 and BRCA2 testing is to be taken very seriously! Premiered October 1, 2008, presented by PBS Series P.O.V. 'Point of View' In the Family is being streamed in its entirety until October 31, 2008. An independent documentary with a running time of approximately 90 minutes, it can easily be viewed in segments.

Tests for cancer are intimidating enough on their own — and now genetic tests can reveal a patient's predisposition for certain breast and ovarian cancers before there are any symptoms.

Thirty-one year-old Filmmaker Joanna Rudnick, upon learning she had such a genetic mutation, made a TV documentary for the PBS series P.O.V. about the agonizing choices such tests involve. The documentary website is accompanied by resources and educational materials.

A day of free mammograms in NYC to women over 40 or over 35 with a family history:
Event sponsored by the CANCER VIXEN FUND, care of marisa marchetto, survivor www.marisamarchetto.com.
Friday, October 17, 2008, 7:30 am - 4:00 pm
St. Vincent's Comprehensive Cancer Center
325 West 15th Street (between 8th and 9th Avenues) New York, NY 10011
Walk-ins are welcome. Or to schedule and appoinment, call 212-604-6009



Army of Women - a new research initiative
Watch this 7 minute video from 'Today' on MSNBC.com with breast cancer pioneer Dr. Susan Love.



The Love/Avon Army of Women offers a revolutionary new opportunity for YOU to partner with research scientists to move us beyond a cure.

Breast cancer has been around for decades, but it does not have to be our future. We can be the generation that eliminates breast cancer by identifying what causes this disease and stopping it before it starts. This is your chance to be part of the research that will end breast cancer.

There are many different types of studies. Some might require you to complete a questionnaire, while others might need a sample of blood, urine, saliva, breast fluid, or breast tissue. Some studies might be clinical trials testing a new detection marker or drug. You decide which studies you want to take part in.

Help us eradicate breast cancer once and for all. Join the Army of Women today!

Comcast.net Pink Ribbon Campaign Forums
Comcast is working with Lifetime, HBO, Showtime, Discovery, The Bio Channel, Parents TV, The Style Network, Exercise TV, CNN, Logo, We TV, Warner Bros., MomLogic, and breastcancer.org to present dozens of programs about detecting and living with breast cancer, as well as health and fitness advice and relevant news clips. Come back to http://www.comcast.net/pinkribbon each week through the end of October for engaging, up-to-date videos and information about the fight to end breast cancer.

7 Minutes with your Doctor - click here to watch video
Playing the role of the patient, Dr. Marisa Weiss reenacts a visit to the doctor. From signing in at the reception desk through the examination, Dr. Weiss reviews how to make the most of each step in the process. Watch the video! 21 minutes, funny and worth watching. A breast cancer oncologist with twenty years of active practice in the Philadelphia region, Dr. Weiss is regarded as a visionary advocate for her innovative and steadfast approach to informing, empowering, and treating patients with breast cancer.

AOL Health United for Pink Breast Cancer Awareness
dedicated to keeping you informed about the latest research in breast cancer risk factors and treatments. Plus, discover our readers' biggest fears about breast cancer and how they work to prevent it.

Robin Roberts Discusses Cancer Journey on Nightline, October 9
Click the link above to watch the 17 minute video of Robin Roberts discussing her treatment on ABC's Nightline October 9, 2008...."You hear people say cancer is a journey, and I never quite understood what they meant. I was like, "What do you mean, 'journey'?" I was feeling fine. I didn't feel sick. The only thing I knew was that I had a lump. And it was cancer. And I had decisions to make..."

October Om Yoga Challenge, NYC
Om Yoga has partnered with the Libby Ross Foundation to provide yogis the option of dedicating their October Yoga Challenge to Charity by collecting sponsors. To get involved and for more information, visit http://www.omyoga.com/ Those participating in the challenge receive one month of yoga at a discounted rate,with 10% of the proceeds going directly to the Libby Ross Foundation. Om also provides weekly FREE classes for breast cancer patients and survivors.

American Cancer Society - Making Strides Against Breast Cancer Walk
Sunday, October 19 Central Park, NYC. To walk with survivor Karen Yvonne from the Abyssinian Baptist Church, please email her at karenysmall@hotmail.com

SHARE's 13th Annual Memorial Ceremony
You are invited to this ceremony for family, friends, support group members and health providers to honor and celebrate the lives of those we have lost to breast or ovarian cancer. The evening will consist of music, poetry and a candle-lighting ceremony. You are invited to bring a picture of your loved one to be entered into our "Remembrance Book." All are welcome. Light refreshments will be served.
SHARE Main Office, MONDAY - Oct 27, 6:00 - 8:00 PM. To register, please call Lee Miller (212) 937-5579

Free Screening Day for women over 40 - breast, cervical and colorectal cancer, NYC
Women at Risk's (WAR's) bi-annual free screening day, Saturday, October 25 provides mammograms and other cancer screenings free of charge to uninsured women in Washington Heights, Inwood, and Harlem.

This area is home to a large Hispanic population that includes immigrant and first generation women. By offering these services, WAR combats the financial and cultural barriers that put women at high risk for developing breast cancer and/or inhibit early detection of breast cancer.

An appointment must be made to schedule a screening. For more information, please call Annie Geddes at 212-305-3269. If you are interested in volunteering please conctact Kitty Silverman 212-305-952.

You Can Thrive! Breast cancer prevention seminar
CANCER: TAKE A STAND - Nutrients and botanicals, a key to preventing cancer
Saturday, October 18, 2008, 1:00 pm – 5:00 pm
666 5th Avenue @53rd St., 2nd Floor, New York City
Cost: $10 pre-paid ($15 at door)
All proceeds benefit survivor wellness programs.
Registration and payment: Luana Halpern 917.463.4267, email: info@youcanthrive.org

HEALTHY PEOPLE GET CANCER, TOO. Cancer doesn’t just happen. It takes multiple mutations to develop into cancer. Our bodies do it everyday. Sometimes the sum of these “unapparent” factors overburdens the immune system. So what can we do? THERE ARE DEFINITE WAYS TO STOP THESE INITIATORS and EVEN REVERSE THEIR COURSE!

Recognize the 33 interdependent risk factors in order to reduce them and learn the specific biological response modifiers (nutrients and botanicals) that are key to STOPPING DNA damage and necessary for optimal vibrant health. If you don’t know these, you should attend! Prevention is priceless. This is an action seminar! It is different than other breast health awareness seminars.

You Can Thrive! is a non-profit group that provides free wellness and prevention
services to breast cancer survivors in this area, all proceeds will benefit their programs.

See www.youcanthrive.org for program details.

Inner Thrive! Center for Breast Cancer Recovery
900 Broadway, Suite 404 (between 19th & 20th Sts), NYC
Sundays By appointment: 917.463.4267
www.youcanthrive.org

You Can Thrive! creates free health resources -- we believe these resources should be affordable for all breast cancer survivors who seek them. Using this program we can alleviate financial, psychosocial and physical distress and improve wellbeing for survivors in need. Our innovative programs promote prevention through healthy lifestyles and continued healing for all survivors regardless of the ability to pay. Empowering survivors with the support and educational resources needed through affordable access to wellness services (acupuncture, massage, reflexology, aromatherapy, advocacy, support) and spiritual/physical practices like Ecstatic Dance and Meditation guidance.

By adding additional nutritional programing and educational seminars, we pro- vide survivors with their own personalized long-term recovery and survivorship plan, filling a critical chasm in breast cancer support and aftercare.



I'll just copy all the links here under this heading with this pink ribbon icon, so they will be accessible to everyone.

Please feel free to send more links anytime, and I will be happy to list them here.

Love, E

That's my Patient Navigator, N, completing the Avon Walk on Sunday, October 5 (while I was home in bed)

Hi E, I made the whole 39 miles but it was very painful! The tent was not so bad because I was so tired I went to bed before 8. Sunday we started the 13 miles in the rain (not fun). I ended up the weekend with blisters, a swollen ankle, a happy heart and a smile. The support group was at mile 22 and I do not think I would have been finished the marathon without the cheers, hugs and smiles of my New York Presbyterian friends. Love, N

Short hospital visit almost over

Hi I am in the chemo suite in little room off the side on the 9th floor. My nurse is rehydrating me with sugars and salts... and some kytrin, I think.

2 hours than I can go home and eat anything I want (which is nothing) and then I can come to chemo tomorrow and then I can come to group on Friday.

small snafu in this scenario is that if I remain this dehydrated and dysfunctional that I might be wrapped out of my clinical research trial altogether. Actually, that's okay, because my tumor is almost completely disappeared after 11 chemo cycles, so technically, the experimental drug, zarnestra, did it's job and I'm done with it in that sense.

and plus it would be nice to eat again. we'll see how it goes.

CU, nothing urgent.

I would like to say that the greatest part of this whole unfabulous Wednesday is seeing my friend C, whom I haven't seen in ages, walk into the chemo suite with a big fat smile on her face and I have no idea how she even found me in this room. Something about talking GPS in her car?

Love, E

Avon Walk for Breast Cancer Saturday and Sunday, October 4th and 5th

Avon Walk for Breast Cancer

We’ll walk up to 26.2 miles on Saturday, and 13.1 miles on Sunday—all so that medically-underserved women and men can get the medical care they need and leading research teams can be supported in their ongoing search for a cure.

The Avon Foundation places a priority on returning funds to the geographic area in which each Avon Walk takes place with a special emphasis on reaching low-income, elderly and minority individuals and those with inadequate health insurance.

Come and cheer the AVON WALK FOR BREAST CANCER walkers.

Click here for a pdf containing a list of 'cheering stations' - safe places to cheer along with maps of the 39.3 mile, two-day long walk route.

Click here for more information about the weekend's activities.

A Columbia-Presbyterian cheering station will be located at

East 69th Street and York Avenue
in front of The University Hospital of Columbia and Cornell

We are scheduled to be there from 11AM to 4PM. We are expecting the bulk of the walkers to come by between 1PM and 4PM. So please when you get to that spot ask for Nancy G. from New York Presbyterian. Nancy S. from 'Women at Risk' will be among the walkers. To wish luck to Nancy S., she can be reached at email: nsingleton@womenatrisknyc.org.


View Larger Map


As for volunteers... Nancy G. looks forward to meeting them on Saturday at the cheering station. Any amount of time they can spare will be appreciated. She will have t-shirts, and also, she will be providing lunch for volunteers. To reach Nancy G., her email address is gautier@nyp.org.


P.S. I might not be there since I'm not adjusted to being out of hospital, sorry in advance, and much love, E

blogging about blogging

There was another thing I wanted to tell you about before I hit send, and that is my fine nurse complimented me on my recent blogpost - the last one about getting out of the hospital at which time I was beyond depressed and entering into a fresh new phase of revenge and retribution! Always eager to sharpen my skills!!

But what she actually said today surprised me, since I regarded all of my hospital blogs as boring, irritating, and factual and less than engaging. She said the blog post that described all the different departments and the cheat sheet I kept to keep track of them described "beautifully" for others the experience of being in a large urban teaching hospital and what that can feel like from a patient's point of view. And, she said I didn't sound bitter, which is pretty amazing considering how BITTER I feel :-) Anyway, I was so pleased, sometimes being starved for feedback, all she had to do was use the word "beautifully", and I swear she has such an effect on me that only pearls will come from my raspberry curve from now on.

CU,

Love E at chemo #11

Hi from chemo suite

Now that I have a raspberry I can blog right from here in the 9th floor chemo suite. If I can't get a wifi signal (not right here), I can just send email over the cellular signal.

This is CYCLE 11 of 16 AND THAT IS A BIG DEAL. ALSO OCTOBER IS BREAST CANCER MONTH WHICH IS A BIG DEAL BECAUSE IT IS TANTAMOUNT TO BE NICE TO E MONTH!! Being nice to your friend, E the cancer patient means going to treatment and bringing lunch and books and calling once a week.

This place is so packed it's like a total ZOO. OMG they should charge admission!!! The noise of forty people taking at once! Plus what seemed liked fifty more people in the waiting room.

My nurse practitioner says I'm excellent shape, as usual, referring to my blood levels. Lost five pounds in hospital, which is fine. They even started talking about marking my main tumor - now disappeared almost completely - with another titanium "clip" (like a tic tac) in case they CAN'T FIND IT WHEN the study is over!

How funny is that? Okay maybe that might not be funny for you, but it is for me, since this is a weird concept to understand BUT I AM THE ONLY ONE I KNOW WHOM THIS rapid tumor shrinkage is happening to. It's not like there is anyone in my support group or in my chemo room on Thursdays who is in my clinical trial. No one has ever emailed me to say they are in clinical trail, too. It's not like a little group or online club I'm in, it's just me - I am the only one I know of in my clinical trial right now, just strange, cureable me who will be 100% better before my disability even runs out.

Anyway, I already have three clips in me already, but each of them marks a benign (2) or malignant (1) satellite lesion.

So why are they so eager to do a lumpectomy on a tumor that they won't even be able to see in December and that probably won't even appear on an MRI? My oncologist says they want to take out the surrounding tissue to ensure a clean margin. She says that dirty margins are the place that cancer cells grow back.

I was actually thinking of having a T-shirt printed up that said "Nice knowing ya!" on the front and "See ya never!" on the back, and wearing it to my last chemo and never showing up for the so-called lumpectomy of the no-more-lump, but my nurse practitioner and oncologist said I should talk to my fav surgeon first, before I make any decisions. That's fair.