Monthly Archives: October 2012

Curbing my enthusiasms

Because I am by nature an enthusiast, my tendency is toward involvement. Our children’s schools, committees of all sorts, online communities and personal projects. I write, speak when asked, and volunteer my time. One of my personal mottos is ‘complacency equals complicity’. If you care, don’t just sit there; do something.

And lately, as my husband pointed out, my level of activity has really ramped up. I have been doing more and sleeping less, when I should probably be doing less and sleeping more.

Over the weekend an unexpected opportunity came our way, as President Obama made a campaign stop in Nashua. David, Peter, my stepmother Carolyn– visiting from Texas and a registered republican but also a good sport– and I were part of a crowd of 8,500 who turned out in force to listen to our commander in chief. As we waited, we were treated to a brief concert and commentary by James Taylor; his spoken word just as thoughtful and entertaining as the music.

President Obama takes the stage (white shirt, center: look closely!)

Zooming in for a closer look

Then President Obama stepped up to the podium to a thunder of applause; his remarks delivered with passion, urgency and eloquence. We were privileged to be in the audience for what felt like an historic moment. However, I had not realized that we would be on our feet the entire time; over four hours. Fortunately Carolyn was able to find a seat in the seemingly full bleachers. In her seventies, she is crippled from severe rheumatoid arthritis and has had both hips replaced.  A lovely gentleman offered to move over so she could squeeze in beside him. It simply didn’t occur to me to try to find a seat as well, and I’m pretty sure I would not have garnered much sympathy even if I’d tried. The thing is, I look quite healthy.

All things considered, I remain incredibly able. However, I need to accept that on occasion my intentions outstrip my actual stamina. Perpetual motion is a hard habit to break, but there are times when I should simply grab a chair (or a bleacher!) and sit for a spell. Acknowledgement of my limitations is not a sign of weakness, but rather common sense. I’m working on it!

Feeling kind of blue

Paint my mood blue

Seemingly out of context and without warning, it hits me. Hard. Like a punch to the chest, it takes my breath away.

I have terminal lung cancer.

Tuesday afternoon  I crawled into bed with the heating pad and had myself a good long cry. Eventually David wandered in and joined me under the covers. We just lay there for a bit. Feeling blue.

And then, because we have a fifteen year old for whom we are doing our best to maintain a veneer of normalcy, we pulled it together. David started dinner and I blew my nose and washed my face.

Peter was working on homework at the dining room table and I sat down across from him. Picking up the science section of the New York Times, I starting reading an article by Natalier Angier,  True Blue Stands Out In An Earthy Crowd.  Here was a totally different take on blue. Blue in all its wonder. Filled with awe inspiring paragraphs such as this one:  “In place of blue pigment, vertebrates and others turn to figment. As Dr. Prum and others have determined lately, many of nature’s most spectacular blues — the plumage of a blue jay or indigo bunting, the teal of a skink lizard’s tail, and now the lesula monkey’s blue scrotum and Pollia’s shimmering blue fruit — are structural in nature. They arise from the specific shape and arrangement of their underlying components.”

So there you go. It’s tough going sometimes, but it’s all about perspective. An hour earlier, my heart had been breaking. And now it was bursting with joy.


A day of love and healing: Yoga for Peace 2012

The Gong Bath captured by Jessica Labbe

On Saturday, October 13th, Jemesii and I participated in the 5th annual NH Yoga for Peace, sponsored by Yoga Caps, Inc., “a non-profit organization that builds community and wellness by making yoga more available and affordable.” I have been a beneficiary of Yoga Caps for the past year, taking (free) classes from founders Jay and Terry Gupta. Yoga for Peace is their annual fund raiser.

The day opened with some humorous Yoga for Yankees with Fred Marple. Jay led us in some gentle yoga and then we were treated to a Gong Bath. Mats spread across the gym, we lay in savasna, eyes shut and senses wide open as multiple gongs sent powerful waves resounding around the room. You could hear but also feel the vibrations which surrounded and then seemingly passed through our bodies:  bathed in and then cleansed by sound.

The participants then went their individual ways to a variety of workshops and mini yoga sessions: Jem and I tried flow yoga (which proved challenging for me) and were introduced to the concepts of Pranayama and Ayurveda. We also sampled wares from a number of vendors and made notes to ourselves about which classes we would like to sign up for next year.

The day closed with a powerful ceremony focused on healing. Ranjani Saigal choreographed and narrated a traditional dance in the Bharatanatyam style. The piece illustrated a story in which Lord Shiva conquered death and was beautifully performed by Amudha Pazhanisamy. Ranjani’s narration was accompanied by Gaurish Chandrashekher on mridangam and Kavita on Saraswati veena. A tiny clip of the performance from Jemesii’s iPhone:

It was not an easy act to follow, but it was now time for my part in the closing ceremony. I chose to speak about the challenge of accepting a terminal diagnosis, and the necessity of making peace with your body even as you wage war against the cancer.

At the (tearful!) conclusion of my talk, I am seen hugging Jemesii and then Jay. Moments laters Geetha Murali, a renowned Carnatic vocalist, Ranjani, and a third woman (whose name I did not catch) began  108  repetitions of the Mahamrityunjaya Mantra. Dedicated recitation of the mantra is said to help one conquer the fear of death. The sustained and rhythmic chanting of three voices in tandem provided a powerful and moving climax to the ceremony.

Jemesii, it meant so much to have you there and I am glad we were able to share this special experience. Jay and Terry, thank you for sharing your vision of love, peace and healing. You enrich the lives of many: I am grateful that our paths have crossed, and I hope to walk beside you for some time to come.

May the circle be unbroken

LIVESTRONG bracelet by Kendra Scott

Soon after being diagnosed with lung cancer, I picked up a copy of Lance Armstrong’s book, It’s Not About The Bike. Reading it cover to cover, I found myself both inspired by and able to relate to Lance’s journey. As I worked to recover my strength after surgery, I’d drag myself over to the exercise bike and repeat these words: “I am Lance Armstrong”. When chemo kicked my butt, I took solace in the fact that it had kicked Lance Armstrong’s butt too.

Like so many others who have been touched by cancer, I began wearing the yellow silicone LIVESTRONG band. Or I did, until the day five years ago when I received a package from my sister Laura. Inside was a very special gift. Crafted of white gold with a yellow diamond set in the “O”, it was one of Austin jeweler Kendra Scott’s limited edition bracelets, created to commemorate the ten years that had passed since Lance’s diagnosis with testicular cancer and benefitting the LIVESTRONG foundation. I felt invincible the moment I placed it on my wrist.

Worn daily, my bracelet has taken on the quality of a personal talisman. Accustomed to its reassuring weight, I awakened one morning to find my wrist bare. Panicked, I tore the house apart and combed the yard, but my search was fruitless. Sick at heart, I placed calls to the only other places I had been in the past 24 hours. One was a cinema. And yes, someone had turned in a bracelet matching my description and they were holding it at the ticket office.

I couldn’t believe my good fortune but wanted to make certain that I never lost my precious bracelet again. Back to Kendra Scott it went, and a custom locking mechanism was fitted over the latch.

This morning, I read the news that Lance Armstrong would be stepping down from his role as chairman of the LIVESTRONG foundation. Despite his repeated and adamant denials, the evidence that he engaged in illegal blood doping would seem incontrovertible. I can’t deny that I am disappointed. I don’t like cheaters and I deplore dishonesty. It is always hard to see our heroes fall, and yes, Lance was my hero.

However, like so many others who have stood on a pedestal only to be knocked off by their own missteps, Lance deserves to be judged for more than a doping scandal. He didn’t just create a well regarded and highly profitable charitable foundation, he started a movement. The LIVESTRONG bracelet has become a signifier the world over that the wearer has a personal connection to a devastating disease, a bright yellow take that, cancer! In unity there is strength.

I will be among those who continue to wear the LIVESTRONG bracelet with pride. Disgraced as an athlete, Lance Armstrong will yet be celebrated as both a champion and a survivor. Because, to those of us with cancer, he is both.

Five Chihuahuas and one proud mama

Kala modeling ‘blue and coral bunny ears’

Jemesii has started her own business on Etsy, and I’m busting with pride. Five Chihuahuas offers a bevy of whimsical and warm sweatshirts for pooches  large and small (sizes xs-xxl).

Our daughter Jemesii has always been enormously creative. Although she possesses a degree in metal smithing, her love of adornment extends well beyond jewelry; shoes, tattoos, clothing and cupcakes–all beloved and bedazzled. Five Chihuahuas is a wonderful fusion of Jem’s fashion sensibility and her devotion to animals. Not just canine couture, but a source* of comforting warmth when the temperature drops.

Jemesii’s explanation of how she came up with the name Five Chihuahuas is beguiling: “I began to research chihuahuas and learned more about their mysterious history; I like to explain to people that chihuahuas used to be the “unicorns” of the dog world. There is a legend that the Mexican general Santa Ana used to ride into battle with a troop of chihuahuas at his back as they were believed to have magical abilities. In my mind I saw this phalanx as five chihuahuas spread behind him…. and thus the name!”

As I said, couldn’t be prouder.

*Always the advocate, Jemesii has a soft spot for rescue animals and some of her product will be donated to dogs with demodex mange, a debilitating but reversible condition that can be particularly severe in cases of neglect.

Thriving with Yoga: Yoga for Peace 2012

One week from today Jemesii and I will be attending the 5th Annual Yoga for Peace. An all day love/wellness/yoga festival, participants may choose from a wide variety of workshops. Healthy food, a gong bath, dancing and chanting shall make for an eventful day which will close with a healing ceremony.

Already, more than 400 people have registered to attend, but there is room for more at this donation based event, which benefits the Peace and Social Justice Studies Program at Nashua Community College and  Thriving with Yoga, a program of YogaCaps, Inc.

I have been a beneficiary of Thriving with Yoga since the early spring. Taught by Jay and Terry Gupta, these free yoga classes for individuals with cancer are truly special. Basic (but low impact) yoga, breathing exercises and visualization help strengthen body and spirit both. Students become devoted, not just to the practice, but to Jay and Terry as well, who bring such love and caring to every session.

If you live within driving distance of Nashua, NH, I urge you to come to Yoga for Peace, and experience yoga first hand. As that fine fellow Dr. Seuss once said:

“If you never did you should. These things are fun and fun is good” 

Great just got better still

On several occasions over the past few years, David and I have tossed around the possibility of moving back west. At one point, he mulled over a very good job offer in California. In addition, we’ve always felt a strong westward pull toward my family, who aside from Jemesii and Jamie, are scattered between Colorado, Texas, Utah and Alaska. “Why don’t you just move to St. George?” my mom has asked. “We have a really good hospital.”

And there’s the catch. I am still alive because I am a patient at not just a good hospital, but a really great hospital, a hospital where so far, research has managed to stay one step ahead of my cancer.

Well, that really great hospital has gotten even better. On Tuesday I attended the opening of the Henri and Belinda Termeer Center For Targeted Therapies. The event began with a symposium in the Ether Dome, located in the Bullfinch Building at Massachusetts General Hospital.

Dr. Jose Baselga (who is leaving MGH to take over the helm as Physician-in-Chief at Memorial Sloan-Kettering Cancer Center) spoke of the impact targeted therapies have had in the redesign of clinical trials.

Dr. Robert A. Weinberg, who was instrumental in the isolation of both the first human oncogene, ras, as well as Rb, the first known tumor suppressor gene, addressed the natural evolution from early identification of oncogenes to the development of targeted therapies.

And then Dr. Keith Flaherty, now the Director for the Henri and Belinda Termeer Center For Targeted Therapies, described the role the center would play, both clinically and in the research setting.

We were then treated to a tour of the center, which is located on the 7th floor of the Yawkey building. I had expected just an expanded laboratory, but it is an entire unit dedicated to phase I clinical trials, with sparkling new private rooms boasting windows to the outside world.

The evening concluded with a moving testimonial from John Murphy, an early participant in a trial for patients with melanoma. And of course a few words from Henri Termeer ( the former president, chief executive officer, and chairman of Genzyme Corporation), who along with his wife Belinda, are the generous donors who made the center a reality.

My feelings that evening could be summed up in three words: awe (of the company I was momentarily keeping), gratitude and hope. Those of us with cancer are supported by an entire army of truly brilliant, incredibly dedicated and endlessly resourceful individuals who are simply not going to back down. Cancer, you are in for a hell of a fight.