Monthly Archives: July 2013

Sadie, Sadie, Jem, Pete and Aug!

L1030395I spent Wednesday in Newburyport with Sadie. There was much catching up to do and some of it was over a delicious lunch at Brine—no oysters for me, but rather a delicious chilled cucumber soup with smoked scallops. Beautiful to look at and better to eat!

Sadie documenting our repast

Sadie documenting our repast

Thursday was dedicated to preparation for a very important visitor—August, our eldest son. David and Peter picked him up at the airport late Thursday night. When I awakened Wednesday morning I hopped into Aug’s bed in the guest room and got a little snuggle in. And then August, Peter and I drove into Cambridge to pick up Jemesii and her dogs, Kala and Fig. Lunch on the go from Whole Foods was sushi and ridiculously priced cold pressed juice beverages from Blue Print. I had the lemon cayenne agave blend and felt it might mix well with a shot or two of vodka (those were the days).

Our next destination was Sadie’s studio in a warehouse in Peabody. I dog wrangled while Sadie took photo after photo of our beautiful children. I am in such exquisite anticipation of the results.

Van Gogh keeps watch:  the master at work

Van Gogh keeps watch: the master at work

Back home we swam in the pool (even Kala and Fig) and enjoyed a delicious dinner of David’s black bean steaks. Jem had to go home early Saturday morning, but the boys and I got a little extra sleep in and then hung out poolside for several hours. Dinner at Republic (demonstrating to my foodie son that there are indeed fine restaurants in New Hampshire), and then we came home to watch the first two episodes of Game of Thrones—it was August’s introduction to the HBO series and I think he might be hooked.

Today; a little upscale retail therapy (read:  outlet malls instead of thrift stores—my kids prefer that I find the cool stuff, wash it, and then give it to them). Tonight, a little home cooking Linnea-style:  fried chicken, mashed potatoes, biscuits and corn on the cob. Maybe some watermelon for dessert. Oh summer!

Living, dying and the laws of attraction

It is hot, hot, hot today and I am more than grateful that we have air conditioning. From my perch on the couch, I can gaze at the swimming pool. A slight breeze stirs the air, and three large plastic beach balls move in tandem on the surface of the water. If you were to banish them to distant edges of the pool, they would quickly regroup. Although their attraction is likely explained by physics (static electricity perhaps?), I like to think there is something else going on. Many species eschew the solitary life for one that is social; traveling in flocks, pods and schools confers certain advantages.

I prefer the herd to going it alone, and once I began blogging about my experience with cancer, I sought out other cancer bloggers. Most of these people I have never actually met, and yet some of them I have become so very close to. We’ve cheered, comforted and consoled each other online. On those occasions when one of us has passed, we’ve grieved with a sorrow that felt anything but virtual.

For more than three years now, I have followed the journey of a young man with rectal cancer. His name is Ezra Caldwell and we ‘met’ after submitting photos to the (ongoing) nytimes.com collage of cancer survivors; Picture Your Life After Cancer. In Ezra’s self-portrait he has intense blue eyes and a nosebleed. I was thunderstruck and wanted to know more; when I googled him I found his blog, Teaching Cancer to Cry.

Ezra is a brilliant writer, chef, craftsman (he designed and built custom bikes), photographer, pool shark, husband to Hillary and companion to Putney. He is, quite simply, an extraordinary human being who has touched the lives of so many. And, he is dying.

In December of last year Ezra learned that his cancer had spread. Faced with poor prospects even if he had further surgery and chemotherapy, Ezra made an extraordinary decision; he declined further treatment. For the past six months he has been in palliative care; a few days ago he entered hospice. His goals include managing his pain and maintaining lucidity. And, ultimately, to die with dignity.

Not only does Ezra continue to chronicle his journey, he is now offering limited editions of his photographs—sort of a personal retrospective. They’re selling like hot cakes, but I managed to snag one and I shall treasure it. Just as I have our all too brief friendship.

still in the wrapper:  the self portrait of Ezra which I purchased

still in the wrapper: photo and print by Ezra Caldwell

In the meantime, Ezra still has a lot to offer and I a lot to learn. Death is a tough concept, but by tackling it head on and honestly, Ezra is (in his own words) “raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop before you die.”

All my love E…

L

*Living, Dying and the Laws of Attraction was originally published on Everyday Health in the Life With Lung Cancer blog.

Three!!!

This slideshow requires JavaScript.

Alright, third installment of good times three days running…this one involving a trio of longtime friends!

The morning after the LIVEstrong party, my pal Melinda suggested we get together for some free performances on the Boston Common. I was more than game as long as parking was stress-free (I’m a real wuss that way). Melinda rolled right over my reticence, and we were on. Well, it’s a good thing I didn’t back out, because Melinda had a real surprise up her sleeve. She’d been conspiring with Sally, who lives in the vicinity of Washington DC; not exactly around the block. As I pulled up to the parking garage (no sweat), Melinda was waiting for me with Sally at her side. Oh joy! The only thing better would have been if Kate, Amy and Kristin had popped out of the bushes as well.

We were in the midst of that bloody heat wave, and although we enjoyed some rousing gospel sung by a choir composed of students from the Berklee College of Music, it was (to quote Cole Porter vis Ella Fitzgerald) too darn hot. So, we did the only sensible thing and retired to Charles street for lunch in the cave-like atmosphere of Figs. Afterward, with iced coffees in hand, we debated how best to spend our precious few hours together. Fortunately, Melinda has a dear family member with a lovely home a mere eight blocks from where we were debating. Better yet, knowing that I spend a lot of time in Boston, this family member had generously provided me with a key in case I ever needed a place to rest or crash. She was out of town but just a phone call away, and we received her blessing to go hang out.

It was, quite simply, air conditioned bliss. We draped ourselves over the comfortable furniture and happily chatted away until it was time to whisk Sally off to the airport. I love my friends!!! All of them!!!

Two!

David and Linnea:  photo by Billie McLane

David and Linnea: photo by Billie McLane

Time flies—an entire week has gone by since David and I attended Dave and Diane Legg’s Live It Up LUNGstrong fundraiser. A combination party/silent auction, this mega party is an annual event to raise awareness and money for lung cancer research.

Diagnosed with cancer more than eight years ago, Diane Legg immediately poured her almost endless energy into advocacy, including many years as co-chair of the New England Chapter of The Lung Cancer Alliance. Diane was featured in an article in The Boston Globe not long after my own diagnosis and I decided to call her. Although we talked on the phone several times, a few more years passed before we crossed paths; now we are close friends. My admiration for her is boundless—as is my gratitude for all the work she and her family do on behalf of all of us with lung cancer.

In addition to advocacy, Diane is committed to pushing herself to incredible physical distances, and this year she will be riding in a leg of the Pan Mass Challenge for the second time. Keep in mind that she has stage IV lung cancer.

But back to the party:  Live it Up LUNGSTRONG was both fun and incredibly meaningful. A plethora of delicious bite sized delicacies, prepared by a loyal cadre of volunteers and served by Amesbury students. Wonderful music, a cash bar and a rousing speech by Diane herself, as well as her two oncologists, Dr. Jeffrey Engleman of MGH and Dr. Pasi Jänne of Dana Farber. And then Diane asked the lung cancer survivors in the crowd to come forward. Arms around each other’s shoulders, we joined together for one powerful group hug.

Carol Cormier, Diane Legg, Ann Campanella, Linnea Duff, Liz Morris photo by Billie McLane

Carol Cormier, Diane Legg, Ann Campanella, Linnea Duff, Liz Morris
photo by Billie McLane

 In Diane’s own words, more about her upcoming ride:

Once again both Dave & I committed to raising money for cancer research at the Dana Farber Cancer Institute (DFCI) by riding in the 2013 Pan Mass Challenge (PMC), an annual bike-a-thon across Massachusetts. The PMC channels 100% of every rider-raised dollar directly to Dana Farber Cancer Institute. It’s the most successful fundraising event for charity in the nation, and also among the leanest. It’s one of the reasons that we ride and support the mission. We also ride because as you may know…I am living with Stage IV lung cancer; I’m a rare 8 year fighter, so this is also personal.

On the first weekend of August we will join more than 5,400 cyclists; Dave will be riding in his 5th PMC and I will be riding in my 2nd. Although the PMC is actually a 2 day ride, Dave adds a third day to the start of the trip and will be riding from the NY/MA border to Sturbridge on Friday. In total, Dave, along with a few of our fellow LUNGSTRONG teammates will be riding 300 miles! This year the Friday ride, which is organized by Brielle’s Brigade, will be extra special and bittersweet, sadly Brielle lost her battle with cancer shortly after last year’s PMC, she was just 13 years old.

I will be riding in my 2nd PMC and will be attempting to ride the 2-day route which goes from Wellesley to Provincetown. (Last year I rode one day and 84 miles.) This route is 164 miles. As hard as this ride is for me, both physically and emotionally, I ride because I can. Most Stage IV cancer patients can’t.
Many of you have generously supported us year after year and for that we are extremely grateful. 100% of the money that Team LUNGstrong raises goes towards Lung Cancer Research at DFCI, under the direction of Dr. Bruce Johnson. Dana Farber has been leading the way in lung cancer research and we hope that someday soon they will be able find a cure. 

Although I have advanced lung cancer, aside from my initial surgery and adjunct chemo in 2004 – 2005, I have not been in therapy. The reason I have not started treatment is that the treatments today are not cures and only work for a limited time. I have been holding out in the hopes that better therapies will be found and developed. I am fortunate that the cancer is slow growing and not overly aggressive; this can change in the blink of an eye. In the meantime, I am living a very full & rich life. I feel extremely blessed to be able to ride with Dave and the rest of Team LUNGSTRONG in the PMC.

We have witnessed many friends battle this disease. A disease, quite frankly, that gets far too little attention and continues to be stigmatized. We want to be a part of changing the stigma and to reverse the statistics! Today only 16% of the people diagnosed with lung cancer live more than 5 years. It is the leading cause of cancer deaths, killing more people than breast, colon, pancreatic and prostrate combined! This year alone, more than 240,000 people will be diagnosed with lung cancer and over 160,000 people will die from the disease.

As I mentioned, DFCI is a leader in innovative lung cancer research and is working diligently to find a cure. There has been more progress in lung cancer research in the past 5 years than there has been in the last 30 years. We are blessed to live so close to Boston and to have this kind of care accessible to us. We are excited to be part of a team that will continue to support this critical work, giving us the hope that we need.

If you are interested in supporting Diane and David Legg or any of their other teammates for the 2013 Pan Mass Challenge, please follow this link: Team LUNGSTRONG.

 

 

 

One, two, three….

I had special outings three days in a row, and may not share in chronological order as I’m waiting on permissions for a photo taken at one such event. Let’s start with dinner out in Portland, Maine: always a pleasure.

With Peter away in Cape Cod, David decided we needed a meal up north. Portland is home to several superb restaurants and our spontaneity meant we couldn’t secure a reservation at our favorite (Hugos), but we were able to enjoy a meal at another fine venue, 555. We arrived in town a bit early and so had a snack (salad and iced tea for me, mussels and a glass of chardonnay for David) down by the waterfront. We then spent an hour strolling around town, window shopping and people watching.

Dinner was excellent: mint and pea soup, pepper crusted seared scallops and a fennel puree. A lovely cucumber ‘mocktail’. And….I think I had some sort of ginger souffle for dessert. I texted David, who has jury duty today to confirm. He recalls a chocolate souffle, and his recollection is backed up by the bill. I stand firm (if muddled) on this:  David had chocolate, I had (some other sort of) souffle, and we shared. Even if I can’t pin down the details (something to be said for blogging a little sooner after a special day), I can assure you it was delicious. Whatever it was.

Tales from the hood

So what’s been going on here aside from swimming laps and the eating of greens?

We had a lovely Fourth of July. After dropping Peter at a party, David and I picked up our dinner at a farm stand. I really wanted to see some fireworks up close and personal but didn’t want to deal with a crowd. Fortunately for us, neighbors host a Fourth of July celebration every year complete with pyrotechnics (which are legal and readily available in New Hampshire). We don’t actually know these people but thought we could get away with taking a seat in the adjacent field. At dusk, after generous applications of deet, we strolled down the road. Fireflies were flashing on and off between the trees and in the distance I could hear bagpipes playing.

There's an art to capturing fireworks, and I I've not mastered it.

There’s an art to capturing fireworks, and I
I’ve not mastered it.

It turned out to be a marvelous display; almost an hour long. And as we were within a hundred yards of the site of detonation, the sound was amazing—you could feel it in your bones. Entirely satisfying.

Two days later, Peter took off for a week on Cape Cod, compliments of the same lovely family that took him to Florida over winter break. I texted him last night to see if he missed us and his response was ‘Maybe’. Cheeky teenager.

I’ve also been prepping a new spot for painting in the house. My current ‘studio’ is in an alcove under the eaves, but I’m just too damned tall and always bumping my head on the ceiling. So some old carpet is coming up tomorrow and I will be relocating to a (vertically) larger space.

Aside from that, when I am not writing, reading, cleaning, eating salads or hanging out in the pool, I am walking. A lot. At the conclusion of one such jaunt our neighbor Ray hailed me. Asked how I was doing, showed me his tan line (impressive, but I don’t need to see it again) and offered me some zucchini from his garden. One thing led to another and soon he was talking about the legalization of medical marijuana. And how if that happens I should definitely get squared away with a prescription. Better yet, I could start growing pot, in Ray’s greenhouse. We could become partners. “Perfect,” I say. “A match made in heaven.” As Buddy and I took our leave, Ray’s shouting down the road “You can pay for your son’s education that way!” I shout back “I’m going home to watch Breaking Bad and I’ll think about it!” Oh, New Hampshire.

Finding myself again

I don’t believe I understood how badly I needed this break from chemotherapy. Five straight years of treatment:  I cannot overlook the fact that it represents an enormous luxury for someone with advanced cancer—in terms of options and continuing survival. However, all the positives aside, five years is a hell of a long time to not feel normal.

As my energy levels rise and my head clears, I am embracing this moment to rediscover me. To quote one of my favorite poets, Wallace Stevens (from Tea at the Palaz of Hoon):

I was the world in which I walked, and what I saw

Or heard or felt came not but from myself;
And there I found myself more truly and more strange.

A bit adolescent, this new self indulgence; perhaps that is why I feel so rejuvenated. And I am trying to make the most of this opportunity. I’ve been weaning myself off of ativan, and am already eyeing the medicine cabinet to see what can go next. My eating habits have changed as well—daily salads and smoothies (my GI tract is showing its approval by cooperating). Long walks and laps in the pool; sixty lengths yesterday, it will be sixty five today.

Having a ball

Having a ball