Family sing-along

La’s pancakes

Diana, Laura, Linnea, John, Rosalie, Bink and Daniel

Andy, Micah and Indigo chez Pastor

Poolside

Laura and Binky lounging on the dock

John and Amanda zipping around on a jet ski

Hale snags a big one

On Friday, the 3rd of May, I flew to Austin. It was an early morning flight, and I’d had my infusion of alimta the previous day. I needed sleep more than conversation and thought this might be a good time to play up my status as a cancer patient in treatment, (as well as to avoid any viruses my fellow passengers might be harboring) so I donned a mask for both legs of the flight. With my knit cap and a scarf wrapped around my neck, I was pretty cozy. Best of all, I actually slept.

So what on earth would compel me to fly the day after chemo? Well, nothing less than a sibling reunion. For the first time in fourteen years, all seven of us were going to be in the same place at the same time—at the home of Laura and her husband Andy in Austin. My brother Daniel and his wife Micah flew in from Alaska with their new baby girl, Indigo. Rosalie, who is pregnant with her second child, had planned to bring her husband Brian and son Magnus, who came down with a fever the night before. So Rosalie came solo, but on the same flight as my sister Bink and brother John and his fiancee Amanda. Diana drove down from Waco, and by Friday night we were all assembled.

Although I had to forgo the hot sun, margaritas and jet skiing, I was more than happy to just hang out. Plus, I did wrangle more than my fair share of baby holding time:  Indigo and I are now fast friends. And I had a chance to have meaningful conversations with every family member (including Laura and Andy’s three sons; Max, Hale and Eli). A surprising highlight of the weekend was a spirited game of Taboo. I’ve had a life long allergy to board games (or ‘bored games’ as I like to say). As a child, I would amuse myself by cheating (ask brother John), but aside from an occasional game of scrabble, I’ve had no interest in games as an adult.

However, May 4th was Diana’s birthday and she wanted to play games. Binky wouldn’t let me worm out of it, so I was in: girls against boys. And you know what? It was so much fun. Taboo is a game where you draw a card with a word on it that you have to make your teammates guess. Below it are five words you cannot use while prompting them, and of course, they are the very words you want and need to say. I was so chemo-brained that I was hilariously inarticulate, but the psychic connection between me and Binky is yet strong, and somehow she managed to guess my words anyway (thanks for making me look good Bink).

Anyway, it was just a special, amazing time and we agreed to not let fourteen years go by before the next sibling reunion. I love you guys!

My mother and me

Happy Mother’s Day to all of the moms out there. And for those of you for whom this holiday is a painful reminder of loss, my heartfelt sympathy.

Robins’ egg blue

My own day has been quiet but utterly delightful. First thing this morning, Peter and I spread some mulch and then went on a walk with Buddy. Peter noticed a beautiful robin’s egg in the road—hatched, but miraculously intact. After lunch, I went out for a latte, and was delighted when I had to stop for a moose crossing the road.

Assorted treasure

Next I paid a visit to a local antique store where I purchased a sextuplet of magical items for a song: two unusual watch fobs, a mourning pin, long brass key chain, a plump (and rather suggestive looking) sateen pin cushion and a wooden last with an unfinished shoe trimmed with  triangles of gold leather still attached.

In the afternoon I spent some time organizing my studio before phoning my mother Evalynn and stepmom Carolyn. Our adult children, Jemesii and August, each called to wish me a Happy Mother’s Day. And then, the ultimate:  sixteen year old Peter made dinner (braised chicken with tomatoes, onions and capers, a roasted beet salad with goat cheese and walnuts, followed by molten chocolate cake—recipes compliments of the NY Times Operation Mother’s Day). David filled the role of sous chef and provided several flower arrangements culled from our garden. The table was beautiful and the dinner absolutely delicious!

Head Chef Peter

As for what this all means; in short I continue to have progression. Not marked, but Dr. Shaw felt ‘little significant change’ was not quite adequate either. However, as I am tolerating the alimta and feel pretty well overall followed by one week of feeling just about fabulous, there is no discussion about changing up therapies yet.

Also noted at my appointment was the fact that I have gained fifteen pounds in four months. I was pretty skinny coming into chemotherapy, so this is a good thing. However, at least some of the weight is due to steroids, and therefore not evenly distributed. I’ve got a bit of moon face going on, and my fingers and toes are sorta chubby—merely enhancing my resemblance to a big baby (more about that later).

Kinetic sculpture by Arthur Ganson at the MIT Museum

When I wake up in the morning I wiggle my toes and then repeat “I’m alive” three times. Then I do a little yoga stretch before I swing my legs over the side of the bed. I pee (doesn’t everybody when they first get up?), mosey on down the hall to the kitchen to get the kettle started for coffee, turn the light on Pete’s aquarium and let our golden retriever Buddy out for his first pee of the day. Joining him outside, I pick the newspaper up from the end of the driveway and gently place it in his mouth. Buddy thens trot back into the house (rather proudly), and drops the paper in the proximity of his food bowl, a not so subtle hint.

Today, as I walked down the driveway I heard one of my favorite sounds:  the call of the wood thrush. My heart soared. On that note, I think it is time for a personal update:  as a good friend pointedly noted, inquiring minds would like to know.

My emotional challenges hardly need delineating. But joy continues to burst through, as sudden and unpredictable as bird song. Sometimes I am actually outrageously happy; full of energy and plans. My stamina and lack thereof do follow a pretty set schedule though. For a day or two following chemo, (and because of the steroids) I fly pretty high. But when I come down, it is precipitous; the sense of fatigue profound.

There are other unpleasant side effects that also set in about day three. I cough a good deal and it feels as if there is a band tightening around my chest (what one friend in my club calls the alimta squeeze). Incessantly watering eyes, scaling skin, and nose bleeds are part of the mix.  My other mucus membranes (all of them) become quite irritated, resulting in diarrhea and mouth sores.

By the second week, I am feeling marginally better on all counts.

Week three—I feel pretty damn good. Then it’s time to do it all over again; I have a scan review tomorrow followed by infusion. I had that scan on Monday, and while in Boston, went on a little outing. My friend Ginger, who is a double digit survivor of lung cancer but now battling a new, unrelated cancer, made arrangements for the two of us to go to lunch at Flour and then to the MIT Museum in Cambridge.

We had a fine old time, and asked a member of the staff to take a commemorative picture of the two of us, in which, Ginger appears to be a mini me. We’re sporting exactly the same hairstyle at the moment, although she is far less gray. Our smiles are quite similar. However, although Ginger never thinks of herself as petite, either she is, or I am very large. Like I said, a mini me. So where’s the photo?

Well, it wasn’t very flattering; just didn’t capture our inner beauty—I think it might have been the lighting. So, we’ll just have to take another one the next time we are together. Promise.

Splitting up a gift may sound odd, but it was not without reason. The white circle holds magic for me; a symbol of protection. And seven was our sum:  Sarah had been number three in the crizotinib trial, and I number four. The bracelets were meant to be souvenirs of travel to strange places; amulets of protection and a testament to our common bond.

Several days ago I received an email from Sarah’s husband. It’s been a difficult time for all of them, Michael and the children. He told me that he was wearing Sarah’s bracelet.

There is simply no way to predict the when or why or even how of grieving. Because life must go on, we do as well. Until those moments when an unbearable sadness washes over us and we find ourselves gasping for breath.

I closed my laptop, drew a hot bath, and had a good cry. And then I put on pajamas and got my copy of Sarah’s book of poetry, Tigers at Awhitu. She had written this inscription on the title page:

David and Peter got home when I was half way through the book, my face blotchy and tear stained. David brought me some tea, and I read every last poem once again.

Tigers at Awhitu—Auckland University Press

I know—I understand, that life is not anything close to fair—and yet Sarah’s passing is such an injustice. Nobody should die from lung cancer at the age of forty. I am grateful that we have her poems to hang on to. In July, a second volume titled Gleam will be published; something that Sarah was really looking forward to.

The particular beauty of poetry may well lie in it’s very spareness and ambiguity. The form lends itself to interpretation, and invites the reader in. We connect the dots and complete the suggested narrative, making the meaning very much our own. I am certain I know what Sarah was talking about in her poem Keep moving. For me, it is confirmation that she is still traveling.

Sarah Broom: photo by Shane Wenzlick (phototek)

Last Thursday I was up before the robins, in order to get Peter ready for a 5:30 a.m. departure for Washington DC with his classmates. After rousing our sleepy boy, I quickly scanned through my inbox. There was a message from my friend Sarah Broom, with the subject In memorium. I hoped to hell it was the title of a new poem but my heart was heavy as I opened the email. It had been sent by Sarah’s husband, Michael. Sarah had died.

As I hurried Peter out the door, I kept the news to myself. Already reeling from the Boston Marathon Patriot Day bombings, I felt an intense need to protect Peter from additional sadness and worry as he went off on what was intended to be a holiday.

After returning home, I crawled back into bed and fell right to sleep. When I awakened several hours later, I immediately recalled a dream:  I’d been sitting on the floor of a closet that was not mine. Most of the clothing was gone, but there were some beautiful objects on the shelves, shrine-like in presentation and fashioned from polished brass and ivory colored lace or coral. The door to the closet opened, and a stranger asked me what I was doing there. I gestured to the space around me and said, “I am so lonely, and this reminds me of the forts we built as children.”

For the past few months, I had spent many a night imagining Sarah, Thao and myself running, climbing, jumping, flying. Young and strong again, with scabbed knees and cheeks flushed with pleasure. Invincible.

My special relationship with Sarah began almost five years ago. When I took my initial dose of crizotinib in 2008, I was the fourth person in the world with NSCLC and an ALK mutation to do so. Sarah, who lived in New Zealand, had directly preceded me on trial as number three. Through social media and a common acquaintance (number two in the trial, our friend Kevin), we began a dialogue.

Initially, our communication was infrequent. With time, emails segued into long telephone conversations. A little over a year and a half ago, Sarah came to Boston for treatment, and we were able to spend some actual time together. Although she soon returned home to New Zealand, our sessions over the phone continued with renewed intensity.

Sarah was brilliant; a poet with a doctorate in English from Oxford in addition to a master of arts in English from Leeds University. Hers had been a tough road: Only thirty five years old and pregnant with her third child when diagnosed with lung cancer, Sarah advocated fiercely for the sort of care not readily available in New Zealand. For more than five years she endured the side effects of multiple treatments and a hopelessly aggressive cancer, always with unfailing optimism, courage and devotion to her family.

In our lengthy chats we talked of the things most friends do:  love, life, relationships. Books, creativity, our hopes and dreams. But we also discussed our illness and, of course, dying. In a way that was extraordinarily open and free from pretense.

I loved Sarah and felt intensely connected to her. I knew she was dying. In fact, the afternoon before I opened the email from Michael, I felt a certain shift in the universe and was certain that it had to do with Sarah.

I am devastated. However, my loss pales next to that of her family. Also, I know that Sarah had made peace with what was coming and that she is now free from suffering. She will live on in our hearts and in her own words, and although the earth may now be a bit dimmer, the sky is brighter still.

And when I walked out last night

it was cool, the coldest night this winter,
and when the stars asked me to join them
in the ache of their bareness, I let them
take me, and they carried me between them,
clusters of stars all along my body, and I arched right back and pointed my toes and fingertips,
and was as long as ever you could imagine
and they did not let me go.

by Sarah Broom

Monday, April 15th, our neighbors in Massachusetts celebrated Patriot’s Day and the running of The Boston Marathon, as they have every April since 1897, when the world’s oldest annual marathon had its inception.

Although children in Massachusetts have a holiday from school, that was not the case here in New Hampshire. It was a little after four when Peter got home, but the sun was shining and the air deliciously warm. I put down my rake and joined Pete on the bed of his dad’s pick-up truck. We chatted amiably as he tucked into a bag of doritos, and I noted what a positive difference the mild weather had made on my state of mind.

And then David came outside cradling the phone, with a concerned look on his face. When I asked him what was up, he explained that my stepfather had just called with the news that there had been more than one explosion at the finish line of the marathon, with at least two deaths and many injuries.

There is no need to go into the details here, as the media has been all over this story for the past week. Suffice it to say that it has been impossible to not feel the impact on so many levels. Sadness, anger, lack of comprehension. Anxiety, as Jemesii called me several times yesterday from her apartment in Cambridge, where all residents had been asked to stay inside behind locked doors as a manhunt was conducted for the second suspect. Relief when the young man had been found.

It’s been a tough week, and not just here. An explosion at a fertilizer plant outside of Waco, Texas leveled much of a community and took at least fifteen lives. A five year old girl in India was brutally raped. And these are just the stories that we know about.

Life can be incredibly painful. We wish it wasn’t so, as our human impulse is to eradicate suffering.

I think that is what I love so much about people; our capacity to care for each other. And events such as those in the past week only tend to underscore the fact that most people are really, truly good. Look at all the first responders after the initial explosions; ordinary people who rushed in to aid and comfort wounded strangers. Or the athletes, who after crossing the finish line, kept right on running to the nearest hospital to donate blood. And then there were all the ordinary people in Boston who opened up their homes to stranded travelers.

Yesterday, Governor Patrick Deval asked the citizens of Boston to just stay indoors. Schools and businesses were closed, public transportation was shut down, and sporting events were cancelled. A snow day, without the snow. It turned out to be a brilliant ploy, as officers were finally able to locate the needle in the haystack. It also highlighted the ability of individuals to cooperate, and to put their own needs temporarily aside for the greater good.

Lives, limbs and innocence were taken this week, and some of us will never be the same. However, in the face of tragedy it is important not to lose sight of one very important concept:  although we cannot always control what happens to us, we can control how we will respond. Evil will never overtake us, because we will not allow it to. Love will always trump hate.

In order to fulfill this requisite, Peter wanted to volunteer at a local animal shelter, where his time would have been spent cleaning cages. I felt there was potential for a more rewarding experience, and continued searching until I found a notice from an organization called New American Africans. They were looking for volunteers to teach ESL, or English as a Second Language. Peter and I both submitted applications (if I was going to provide the transportation, I figured I might as well participate) and we went to Concord for an interview with Honore Murenzi, the director of the program. And then we got started.

The students are primarily political refugees from Bhutan; ironically, I wrote a now seemingly naive post about Bhutan and Gross National Happiness  three years ago. At the time I was unaware that Bhutan is a place with a complicated history, and that not everyone has equal access to happiness, as demonstrated in this nuanced article by Kai Bird from  the March 26, 2012 issue of The Nation. The author addresses the forcible expulsion in the 1990′s “of an estimated 80,000 Bhutanese of Nepali ancestry.” Most of those expelled as a result of poorly disguised ethnic cleansing languished in Nepalese refugee camps for almost two decades. The United States (and a handful of other countries, including Canada) ultimately agreed to accept a significant number of refugees, and between March of 2008 and September of 2012, 60,000 Bhutanese resettled in the US.

It’s daunting to think of what these people have already faced and the challenges that still await them, starting with the difficulty of adapting to a foreign culture where you don’t speak the language. Those who come to ESL class range in age from perhaps twenty to sixty five. Many of them have never been schooled, and progress is slow. However, their tenacity is inspiring, and Peter and I have enjoyed getting to know these remarkable people.

Unfortunately, once I started chemotherapy, I was unable to maintain our weekly schedule. However, we hired a young woman, Abbey, to help out with transportation occasionally, and she has enabled Peter to honor his commitment. Now he sometimes leads a class of more than a dozen students by himself.

Last week I felt well enough to take Peter myself. After class one of the students approached me to ask if Peter and I could come to her house for dinner that night. This was not the first time she had made this invitation, and although Peter needed to get home to work on an assignment, it was clear that we needed to honor her request.

And this is why:  many months ago we had taken several families from our class to the grocery store—which meant walking a mile each way—something they do on a regular basis no matter the weather. Our intent was to show them how to use coupons. Ultimately, our effort was misguided, as the coupons were for significantly more expensive brands and therefore of little use. However, Peter and I helped identify cheaper products that were on special, and we loaded up a cart. As it turned out, there was some confusion at checkout regarding vouchers, and I ended up charging quite a few of the groceries to my credit card.

The next week, everyone shyly paid me back, but one woman was several dollars short. I told her not to worry about it, that she could have us over for dinner some time. The woman was the same one who had repeatedly asked us to come to her home for a meal, and although I had made the comment about having us over for dinner in an offhand way, that is not how it had been received. It was my turn to learn something.

And so our friend, named Phalguna, got in our car and we rode together to the apartment complex where many of the refugees are housed. When we arrived, her husband was resting on the couch, but he sat up and indicated that we should sit next to him. He spoke very little english, but we did our best to engage in small talk as Phalguna busied herself in the small kitchen. I was interested in the ancient sewing machine that sat next to the table, and with the help of his ‘third daughter’, Phalguna’s husband explained that he was a tailor. He rose to fetch some examples of the clothing that he made; saris and men’s button down shirts.

And then Phalguna set glasses of water and two steaming plates upon the table and invited Peter and I to sit down. “Namaste” she said, and as the three family members watched, Peter and I ate the dumplings stuffed with cabbage, onion, ginger and cilantro that Phalguna and her husband had made earlier in the day.

The dumplings were delicious. After we had eaten our fill, Phalguna placed a generous helping in a plastic container for us to take home and Peter and I said thank you and goodbye. The entire experience had been unexpected and just a little bit of awkward but a whole lot of wonderful. And, just as we have throughout our time with New American Africans, we felt as if we had gotten back far more than what we had given.

Peter Duff tries to thwart a candid shot (fail)

On the second of April, Peter, David and I attended Experience Exeter, a daylong introduction to Phillips Exeter Academy for admitted students as well as their parents. To say we came away dazzled is an understatement.

Of course, there is something very bittersweet about the fact that Peter shall be going off to boarding school. Yes, it is the realization of both a dream and some very focused and labor intensive campaigning on the part of yours truly. I couldn’t be happier about the end result:  a new world is going to open up for Pete; one glittering with opportunity. In addition, he will become a member of a community that shall provide him with academic, social and emotional support.

However, from a purely selfish standpoint, this is going to require some adjustment. You see, Peter Duff is really great company. I adore this kid and love spending time with him. A couple of days ago, the two of us were out running errands. At one point I began to feel a little emotional and turned to Pete to say, “I’m really going to miss you.” He responded with, “I’m glad you’re going to miss me.” (versus the alternative!) However, what I heard was ”I’m glad you’re coming with me.”  That is what you call wishful hearing.

For a peek into what the future holds for young Master Duff, check out the lovely video PEA sent along with the email announcing his acceptance:

(if you don’t see a video, you may have to download vimeo—my apologies!)