Monthly Archives: August 2012

Camp Kesem MIT 2012

Peter at pick-up: Camp Kesem MIT 2012

Summer has come to a close with a now cherished ritual: Camp Kesem, MIT. On Sunday, August 19th, we dropped Peter off at Merrowvista in the Ossipee mountains for a week of hiking, swimming, games and cabin chats. His fellow campers (almost a hundred strong) ranged in age from six to eighteen.

At first glance, this is a summer camp like any other. Look more closely, and you will see that Camp Kesem is truly special. Each of the children in attendance has one thing in common: a parent diagnosed with cancer. Some have lost a mother or father, others are afraid they soon will.

Camp Kesem is first and foremost a respite from worry, a week devoted to good clean fun. But it is also a safe place to pull out the emotional stops, and time is set aside to share individual journeys. In essence, it is a giant support group and extended family rolled into one. There is a consistency to Camp Kesem, as most campers return and the majority of the counselors do as well. Camp Kesem is a national non-profit organization, but regional camps are sponsored by student groups from local universities. The counselors at Camp Kesem MIT are either enrolled at or alumni of Massachusetts Institute of Technology. They are volunteers, and not just for one week in August:  Camp Kesem is a yearlong commitment. In between actual sessions, time is devoted to planning, raising awareness, hosting reunions and aggressive fund raising:  Camp Kesem is free for every child.

Both mentor and friend, counselors develop tight relationships with their charges. Many of these young men and women have also been touched by cancer, and in sharing their experiences, make it easier for campers to do the same: sometimes for the first time ever.

Friday, August 24th was the final day of camp, and we waited at MIT for the buses from Merrowvista to arrive. Peter was one of the first to file in, and he greeted us only briefly. It seemed he was not quite ready to leave the bubble of Camp Kesem, and we kept our distance as he joined the circle of campers and counselors for one last round of communal singing and dancing. After a time, the teen campers and their counselors broke away and formed a smaller circle, which slowly tightened into a knot; one big group hug.

Duff was one of the last names called for checkout, and I joined Pete on the steps as he said his goodbyes. His dad went to feed the parking meter as Peter and I collected his duffle and other items. The reserve he’d displayed earlier had fallen away; he was holding back tears. I asked if he was okay. Yes, but sad as well.

As we began to talk and I listened to his recounting of the week, I understood again what an important place Camp Kesem held in Peter’s heart. He’d just spent a week laughing, playing, listening, telling, crying, hugging. There had been moments of great sorrow, but each had been balanced by acceptance, compassion and even joy. He had become a valued member of a caring community, but for the most part, this community existed in a certain time and space. Although he had email addresses, he knew that it wasn’t going to be the same. Of course, there is next year to look forward to.

Thank you, Camp Kesem, for recognizing that the children of people with cancer need a special place of their own. A place to heal, to connect, to grow. A place to make enduring friendships and to gather strength. A place where they and their personal experiences are both recognized and valued, a place where the word survivor is all about them.

Swimming around

Next stop, the real pond out back

I found and fell in love with our current home online. Like a hopeful suitor, I scrolled through the photos and watched the artfully shot video again and again. The house, built in the 1970’s, was straight out of Dwell. Beautifully landscaped and surrounded by five forested acres, it also boasted an in ground swimming pool. Kidney shaped and forever azure in the looping video, ‘a sylvan pond’, according to the accompanying text.

We moved in just as the last of the snow was melting. Consumed with unpacking, it was mid June before the heavy green cover over the pool was peeled back. Beneath the chilly water lay a carpet of overwintered leaves and debris. Undaunted, I got right to work with a long-handled net and a brush and soon the pool was serviceable.

However, it didn’t stay clean for long. Leaves, pine needles, caterpillars, earthworms, all variety of amphibians and the occasional rodent all took the plunge, and most to ill effect. I began to suspect that it was in fact more pond than pool.

This summer I have been vigilant and yes, stubborn. Every morning I empty the filter baskets and fish the frogs and their leavings from the pool. I scoop worms and needles from the bottom, skim the leaves from the surface and scrub green algae off the sides. And, because I am going to all this trouble, I swim. Just about every single day. Breaststroke, twenty, thirty sometimes forty lengths. I love the cold shock as I first go under, the weightlessness, and how the sun glints off the water.  When I step out of the pool, I am breathless. Eschewing a towel, I lay in the warm air and let the water evaporate from my skin; it is all very reminiscent of summer in my childhood. And, by pushing against my physical limitations, I am thumbing my nose at cancer.

My daily swim: two parts stubbornness and one part pleasure.

August: looking back

August and Peter: the hug goodbye

Over too soon, the whirlwind week with our boy August has come to an end. We packed a lot into seven days: quick trips to Boston and Ipswich as well as an overnighter in New Bedford, where David, Peter and August went fishing and blue crabbing both (we feasted on their haul Saturday night). We hung with Jemesii and Jamie and their pups Kala and Fig in New Bedford and on Friday, we all went south to Providence, Rhode Island for dinner at an amazing Ecudorean restaurant, Los Andes. We swam in the pool, went on walks, watched a movie, worked out at the YMCA and stopped at Salvation Army to pick through LP’s (August DJ’s and makes his own electronic music).

On Saturday, August and Peter not only washed my car, they detailed it.

It was amazing to have all three of my kids in the same place at the same time, if only for a short while. Aug flew back to Colorado early Monday morning and saying goodbye was really, really difficult. It is hard to let go, to not covet. However, we’ve encouraged independence and self resilience and the lesson took.  Time together is no longer a presumption; it has become a privilege; hence all the more precious.

Two thirds of my progeny

Six weeks notice

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This is day two of a week long visit from our twenty six year old son August. We hit the ground running yesterday, with a trip to Massachusetts General Hospital. David and Peter came along as well, and August got his first peek into this particular window of my life.

It turned out to be a bit much for him. A lack of geographical proximity has provided August with an emotional distance from my cancer; accompanying us on a visit to the hospital brought it all home, and shortly after we were shown to our private room, he broke down.

When Dr. Shaw came in, it was just David and myself. She asked some careful questions as to how I was feeling. Great, I said; heaps of energy and rock solid resolve. But when I lay down at night, the crackling/wheezing in my lungs was a potent reminder of where I was heading.

I had in fact just arrived: in clinical trial parlance, progression. Defined as (not 30%, as I stated in an earlier blog–now corrected) 20% progression from the nadir–or the least amount of measurable cancer in my lungs since starting trial. To break it down another way:  A positive response in a clinical trial is defined as a 30% or greater reduction in tumor burden. Ultimately, my cancer decreased in measurable area by 63% ; that was my personal nadir. My latest CT scan shows a 21.8% increase from that lowest point. However, I still have approximately 40% less cancer than when I started this trial.

My cancer is returning or progressing relatively slowly and I continue to maintain an exceptionally high performance status, (ability to complete daily tasks). If this were a standardized rather than experimental treatment, I would undoubtedly eke several more serviceable months from it.

As a participant in a clinical trial, I am bound by protocol (literally). Happily, Dr. Shaw pulled a rabbit out of the hat; Novartis has agreed to let me to stay on LDK378 for one more cycle. We now have six weeks to figure out where to turn next, and that softens the blow considerably. Soon, I will embark on a new adventure. In the meantime, life will be lived to the fullest.

After saying goodbye to Dr. Shaw, we collected the boys and grabbed a late lunch. Not deterred by the fact that it was already half past three, we continued on to Ipswich and Crane Beach.  Arriving just as the crowd for the day was thinning, we were met by clear skies and balmy weather. August and Peter took a quick dip in the chilly Atlantic and soaked up the late afternoon sun while David and I walked the length of the beach as the tide came in.

But we weren’t finished yet; August had requested dinner at the Clam Box, where the four of us worked our way through two enormous plates of fried clams.

Stuffed, but with much food for thought still on our plates, we headed home.

The force of life

Two weeks ago I was cleaning the pool when a brilliant flash of blue caught my eye. A tiny butterfly was floating in a tangle of flotsam. After scooping it from the water, I could see that one wing was badly deformed and the other mostly torn away. Surprisingly, the little fellow was still alive.

After taking several photos, I left the butterfly perched on a table and finished skimming the pool. When I went to check, the butterfly had tumbled from the table to the ground. Clearly, it was unable to fly and stood no chance against the sharp eyed birds or the many frogs in the surrounding grasses.

I carried the tattered insect inside and placed it on a china plate, covering it with the inverted insert from a salad spinner. After snipping a variety of flowers from the gardens, I placed them in a small glass of water beneath the dome; a bottle cap filled with sugar water provided an alternative source of nourishment.

I’ve been checking on the butterfly every day since. Once, I found it floating on the surface of the water in the glass (not content with one near drowning, it must have fallen off a stem and gone for another swim). I removed the glass of water and instead have replaced the wilted flowers each day with fresh ones.

It has been more than two weeks since I first plucked this little blue jewel from the pool. My intention was to prevent a violent end to a life that already hung in the balance. I expected the butterfly might last for a day or two. However, judging by the colorful stains on the interior of the dome, it is eating and defecating both. Every morning I am surprised to find it yet alive, its normal life expectancy likely exceeded. Under better circumstances, the butterfly would have spent these days aloft.

If there is a lesson here, it is simply this: death may pull, but life pushes back. Hard. A mangled little butterfly, born with a handicap that precluded flight, has somehow adapted to unlikely circumstances and prevailed: it has lived.

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“We are the miracle of force and matter making itself over into imagination and will. Incredible. The Life Force experimenting with forms. You for one. Me for another. The Universe has shouted itself alive. We are one of the shouts.”

Ray Bradbury

twentieth

Late yesterday David and I traveled to Portland Maine for a delectable meal at Hugos.  Not just any old night out on the town, we were celebrating our 20th wedding anniversary. To show how much he loved me, my husband wore his nantucket red chinos and the apple green topsiders that have been languishing in his closet. It pleased me, and in turn I donned a frothy skirt of amber tulle; one of our servers said it brought to mind an adult version of a ballerina’s frock.

It is hard to believe it has been twenty years, and that our flower girl is now twenty seven and herself four years married; the ring bearer an all grown up twenty six. On that summer day in 1992, the groom wore his grandfather’s tux and the bride an antique champagne colored lace and silk shift. The master of ceremonies was a justice of the peace, and Jemesii and August stood beside David and I as we took our vows. When we signed the marriage license, they placed their signatures next to ours.

It is an accomplishment, these twenty years. We have found ourselves challenged but also blessed, our three children being the best of all we share. Yesterday, we celebrated. Tomorrow, there will be an early morning session with the marriage counselor. Because love is worth fighting for.

Pan-Mass Challenge and my extraordinary friend Diane Legg

Since its inception in 1980, the annual Pan-Mass Challenge has been raising funds for cancer research and treatment at the Dana Farber Cancer Institute in Boston. A giant bike-a-thon-love-fest, the Pan-Mass draws thousands of riders from across the country, each of whom commit to meeting (and often exceeding) a minimum pledge based on the chosen route and distance that they will ride. 100% of the money raised by riders goes to the Jimmy Fund, and then in turn, to Dana Farber.

Sometimes the riders themselves are cancer survivors. This year, (today–8/4/12) my friend Diane Legg, who shares my preference for the term surviving cancer; will be amongst them. I became acquainted with Diane shortly after my own diagnosis when an article about her fight with lung cancer was featured in the Boston Globe. I contacted her and we have, in one way or another, been partners on this journey ever since.

Diane’s diagnosis propelled her directly into advocacy, and she is cochair of the New England Chapter of the Lung Cancer Alliance as well as director of LUNGstrong Inc, the team that Diane will, along with her husband David, be riding for.  A commercial featuring Diane:

And for a more in depth look, check out this interview with Diane by Heather Unruh of Channel 5, or Diane’s PMC page.

In a word, amazing.