Category Archives: Connections

Perfect alignment

Posted on January 7, 2019 | 22 comments

The first thing I saw upon opening my eyes today was the planet Mars. Cold little fire in the early morning sky.

‘Hey Mars’, I said. ‘Save me.’ To which Mars calmly replied: ‘I got nothing.’

Honestly, I was somewhat taken aback. But as I stared across the millions of miles of space, I saw not Mars but the light of the Sun, reflected. And I thought about the other side of this star-like planet, now sheathed in darkness. A jet passed high above. I pictured the passengers inside, people on their way somewhere. So far and yet so close as well.

A bird flew past the window; fast. And then some more, buffeted by the breeze. Mars was growing dimmer, and I had to concentrate to keep it in focus. Two more jets, their contrails now lit by the rising Sun. Seagulls, playfully riding the thermals.

All this I could see. Yet the air was also filled with microorganisms, invisible to the eye but very much part of this marvelous froth of life. I felt this overwhelming connection to everything and nothing, as nothing was actually something. And I understood with a clarity that felt like pure joy that even when I was no longer me, life would go on.

At last glance, the bright planet was obscured by daylight. Far, far away. There, but not there.

Thanks for nothing Mars 😉

22 Comments

Posted in ALK+, progression, Attitude, Connections

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Giving Tuesday

Posted on November 27, 2018 | 1 comment

S’alright. Shameless (make that proud) pitch for two of my favorite organizations on Giving Tuesday.

First, Camp Kesem. Honestly, I don’t know how my family would cope without Kesem in our lives. This free (yes!) camp for children impacted by a parent’s cancer diagnosis has played such a positive–make that transformative–role in our son Peter’s life.

Peter at Camp as well as a quote from him (Coati is his camp name).

Only seven years old when I was diagnosed with lung cancer, Peter’s childhood had a shadow over it. The summer he turned eleven, we were told I had three to five months left to live and both Peter and I began counseling. Obviously I didn’t die then, but we were all traumatized.

I had to talk Peter into camp and could only hope it would prove to be a positive experience. He came home from his first Camp Kesem MIT (college students from around the country both staff and support chapters) with the assertion that it had been the best week of his life.

Peter continued to be a camper right up until he aged out and now that he is a student at MIT, he is a counselor. His fellow campers and counselors are part of Peter’s extended family–a family that gets what it’s like to grow up with cancer in the house.

Last fall I had my own opportunity to attend ‘camp’ in Peru, as a fellow with A Fresh Chapter. Unlike Peter, I required no urging. However, my experience was every bit as transformative for me as Camp Kesem was for him.

Like Peter, I was surrounded by others who got my experience with no prior explanation required, as each of us had been diagnosed with cancer. For two weeks we worked in the morning as volunteers in the communities surrounding Lima. After lunch we’d sit in a semi circle of comfortable chairs in a large room that overlooked the ocean. Many magical conversations happened in that space and along the way we formed an unbreakable bond. My tribe is now part of my extended family–twenty three people that I love and respect to the moon and back.

So please, on Giving Tuesday, consider supporting one (or both) of these two life changing organizations.

Camp Kesem (Peter Duff’s fundraising page 😉 or A Fresh Chapter. And help spread the gift of healing.

❤

1 Comment

Posted in Cancer and our children, Connections, Coping, Uncategorized

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This life of mine

Posted on August 13, 2018 | 4 comments

I woke up in a hotel bed in Vegas this morning. Work, not play as I am here on behalf of Pfizer to speak on a panel. However, any morning I can sleep in feels a lot like vacation.

The highs and the lows. I rode to the airport yesterday via Uber and I actually wasn’t quite sure I’d make it. My driver was a recent immigrant and possibly yet unfamiliar with the rules of the road. At least, that’s what I said to myself as he cut across four lanes to take an exit after veering off course for the second time. Fortunately the flight was uneventful and I was picked up by a shiny black SUV at the airport.

Poser. I didn’t actually drink/eat all of that 😉

This is the third time I’ve travelled in the past month as a friend donated miles to get me to Louisville for the first annual ALKpositive summit. It was meaningful to meet many of my fellow mutants and their families and I had a blast. I flew from there to St. Louis—via Chicago, even though it would have been a two hour drive. Not my dime or my itinerary, but in the end, certainly my pleasure as I got to spend several days with members of my Fresh Chapter tribe in meetings at Eli Lilly (an important sponsor of A Fresh Chapter).

Hugging my man Scott after our interview.

We crammed a whole lot of connecting into a little less than three days but it felt as if we were just getting started. And as glad as we were to be together, each of us felt the absence of the other members of our tribe. By the time we reprised our group hug at the end, I was feeling mighty emotional. In the best of all possible ways. You just can’t go through an intense experience like volunteering in Peru without developing some extraordinary bonds.

All of this diversion has been a good thing as I’m having a moment.

Three months ago I took myself off of Prozac, the antidepressant I started taking not long after my diagnosis with lung cancer. Prozac is highly effective for me and I tolerate it well, although it is not without side effects, including reduced libido. On three occasions I have taken myself off of it and each time shit has hit the emotional fan. My experience this time was no different, as I was slammed with the double whammy of losing my insurance and a bad breakup.

My insurance was restored but my confidence, not so much. Although there is no question I am better off without the relationship, I am feeling wary–sort of a persistent, creeping anxiety. I am certain that shall soon pass and in the meantime I am healing my heart in the best way I know how; loving on my friends, my children, and my little white dog.

Oh yeah, and Prozac. As much as I like the idea of being off an antidepressant, I am better on. And better is definitely the look I’m going for 😉

4 Comments

Posted in Advocacy, Connections, Uncategorized

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The pass it on power of media

Posted on June 21, 2017 | 8 comments

Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.

Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.

I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.

Linnea and Bill. Connected 🙂

 

8 Comments

Posted in ALK mutations, Connections, MGH, personalized cancer care, Uncategorized, Xalkori

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How many ways can cancer break your heart

Posted on March 7, 2017 | 19 comments

Seemingly the possibilities are endless.

Upon first hearing ‘you have cancer’ we were forced to face the specter of mortality; in our face and way too close for comfort.

Next up was the impact our diagnosis had on friends and family and if we were parents, our children–now suddenly faced with challenges that had no rightful place in the happy childhood we’d imagined for them.

Loss was a word that soon figured largely in our everyday existence, with bodies that suddenly looked and felt very different as cancer became part of our identity on both the meta and purely physical level.

Stress and anxiety—our finances, interpersonal relationships, jobs. Everything was suddenly at risk.

However, that didn’t stop each of us from trying to put a brave face on. We sucked it up and made an honest effort to find the silver lining in cancer. Certainly there was opportunity for personal growth, but at a cost oh so dear.

And then we discovered that the one really good thing to come from our disease was each other.

Since my diagnosis, I have had the privilege of knowing, interacting with and often growing quite close to an incredible assortment of extraordinary individuals. Brave, gracious, generous, kind, caring, fun. Lovely, lovely people who have made my life so much richer.

However, there is an obvious downside to falling in love with others who are battling cancer and that is the potential for heartbreak.

Last week the lung cancer community lost someone who had touched the hearts of many. Maybe it was her youth, the fact that she was a young wife and mother, or perhaps it was Elizabeth Dessureault’s radiant smile and outgoing personality that made her so appealing and accessible.

elizabeth-dessureault-and-18-month-old-son-jack-for-story-by

Her passing took us each by surprise and the ripple of grief soon became a big wave. Shock and sadness turned to anger and for some, fear.

The truth is, you can have the best oncologist in the world (Elizabeth, like me, saw Dr. Shaw) and although your odds may be improved, the course of this disease remains ridiculously unpredictable.

It is all so very disheartening.

And yet. There is only one way to go and that is forward. You and me. Live and love some more. Because every moment is precious and no one is assured a tomorrow.

19 Comments

Posted in Connections, Dying, In memorium, Matters of the heart, Uncategorized

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Because magic can be in a moment

Posted on September 5, 2016 | 9 comments

I’ve gotten an adventure or two under my belt since my last post (with more to come) and I plan on divulging in detail. But before I get to all that I’d like to share a truly magical moment. On Sunday I accompanied my friends/neighbors Machiko and Koichiro Kurita and their dog Momo to Mill No. 5; an enchanted space if there ever was one. The four of us were wandering about and came across this most perfect of props. I whipped out my handy iPhone for an impromptu portrait of two of my favorite photographers and their little peach Momo. Serendipity.

Koichiro, Machiko & Momo.

Koichiro, Machiko & Momo.

9 Comments

Posted in Connections, Just for fun, Uncategorized

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When Breath Becomes air

Posted on May 24, 2016 | 4 comments

If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should. Once I picked it up I found it difficult to put down.

Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately distance himself from the disease with a dispassion that is difficult for a layman. I had to work very hard to not take my own lung cancer personally, but Paul was able to come to a place of acceptance/grace with remarkable speed, and this lends his telling a particular elegant universality.

When Breath Becomes Air was preceded by an essay by Paul in the NYT that garnered a huge response from readers, ultimately leading to a book deal. There was a lot of buzz in the lung cancer community prior to publication of When Breath Becomes Air, in part because some of my friends and peers were personally acquainted with the Kalanithis. Aside from the pre-publication chatter my own introduction to Paul’s book was this touching essay by his wife Lucy, which also appeared in the NYT. I kind of fell in love with Dr. Lucy Kalanithi after reading it and have been hoping for some time that I would have the opportunity to meet her.

Linnea, Lucy and Diane

Linnea, Lucy and Diane

Well a couple of weeks ago I got my chance, as the Harvard Book Store sponsored a conversation between Lucy and Neel Shah, an assistant medical professor at Harvard Medical School. The venue was the Cambridge Public Library and my friend Diane and I (in true fangirl fashion) got there super early with seats front and center. Better yet, before the event started I had returned to the lobby in order to refresh my parking ticket just as Lucy was arriving. She recognized me from social media and came right up to say hello and gave me a great big hug. Now I was smitten.

Once the event got under way, Lucy read some passages from the book, conversed with Neel for a bit and then took questions from the audience—many of whom were medical students. Some of the questions were of a truly diffuclt nature, yet Lucy was unfailingly warm, patient and kind. Afterward a long line formed for autographed copies of the book, and Lucy took her time with each and every person. A physician herself, I can only imagine that she brings the same care to her practice.

Read the book, and better yet, if Lucy Kalanithi comes to your town, go!

4 Comments

Posted in Connections, Death and dying

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This is Hope

Posted on May 17, 2016 | 10 comments

It’s been more than two weeks now but I’m still high on Lungevity’s National HOPE Summit. Some clever person in attendance coined the hashtag #thisishope which absolutely sums up what I have come to view as one big family reunion. This year we numbered about 300 survivors and caretakers. All with a common goal; doing something about lung cancer.

Dolio, Linnea, Bruno and Diane.

Dolio, Linnea, Bruno and Diane.

Leslie and Andy Trahan (<3 these two)

Leslie and Andy Trahan (

Striking this year were the number of young people in attendance—and of course the older I get, the greater the number of survivors who I look at and think, ‘you could be my child’. Absolutely unacceptable and something that really gets my panties in a twist. However, what these young survivors and their caretakers bring to advocacy is immeasurable passion, energy and optimism. I am also always incredibly moved by those advocates who have lost either a family member (sadly, sometimes a child) or a close friend to lung cancer but continue to fight for not only their lost loved one but all of us with this disease. Thank you.

It is never a good time to have lung cancer but with FDA approval of eleven different drugs for lung cancer since 2006, it is at least a time of increasing therapeutic options. And look at that picture of all the people who have lived for ten years past diagnosis (Diane and myself included)—again, hugely encouraging.

IMG_5534

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Survivors ten years and more out from diagnosis

And that first photo? Dolio, Bruno, Diane and I are all lung cancer patients/advocates (although you wouldn’t guess the patient part looking at the picture, and that is why I love it so). The four of us went out to dinner the final evening of HOPE summit. Our reservation had been mistakenly made for the following night and the only available table was outside and it was pretty darn chilly. Diane played the C card and upon hearing that we were all living with lung cancer, the manager was overcome. His mom had just been diagnosed with advanced breast cancer, and our smiling faces made him feel infinitely more hopeful. He ushered us over to perhaps the best seat in the house and then brought us this ridiculous (but oh so fun) tropical drink. It was a lovely and somewhat surreal ending to a fabulous weekend of learning/bonding. Thank you Lungevity and see you next year!

10 Comments

Posted in Advocacy, Connections, Living with lung cancer, Uncategorized

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I love people

Posted on February 14, 2016 | 22 comments

Screen Shot 2016-02-14 at 6.39.49 PM

On this Valentines day, 2016—I would like to send a love letter to everyone. Absolutely EVERYONE.

Why? Well, because I love people. And I mean that from the bottom of my heart.

I know a lot of folks who feel dogs might be better than us humans, but not me. Dogs are great but people are my favorite animals of all. Nothing is more interesting to me than other people.

That doesn’t mean I turn a blind eye to the fact that we, as a species, do a lot of shitty things. To the planet, other creatures and each other.

The thing is, I believe in us. People are capable of incredible empathy, kindness, generosity, grace. We can be so smart, creative and industrious. Brave, courageous, strong and tender. Altruistic. Most of us care deeply about each other, and that is perhaps our greatest ability of all—love.

 

22 Comments

Posted in Connections, Uncategorized

The underscore

Posted on December 16, 2015 | 2 comments

After reading the post about losing my friend Ginger, another friend of mine commented that ‘her long time in remission has to be a triumph of its own’. Well yes, absolutely. And it made me realize that I left out one of the most remarkable aspects of Ginger’s story. Just prior to her diagnosis, Ginger, recently divorced, had travelled to Israel and met the man who would become her second husband. Post diagnosis, she experienced almost a second lifetime, one very full of joy. When I met her she was recently widowed and embarking on yet another chapter.

Ginger’s life was inspirational/aspirational for me. And although the details differed, she provided me with a role model of what could be if I only had the courage to really go for it.

I’m not talking about cancer here, but rather my divorce. It’s not an experience that I’ve shared very much about but it was hands down one of the bravest things I’ve ever done.

When I tell people I am recently divorced they say they are sorry. Well, I’m not. It requires a lot of hope, faith and optimism to start over when you have cancer, but it was something that needed to happen and honestly, if I was strong enough to do this, I can do anything.

I gained so much from my friendship with Ginger and I shall miss her so, so much. My last email from her was a month ago and it sort of captures the essence of our friendship—a little bit of cancer, a whole lot of caring:

I saw you all over the Globe. Good article, but you are so much better in person! 🙂
Good luck to Peter!
I went in for chemo yesterday and they sent me home- too weakened. But I will try to build myself up again. It’s partially the blasted antibiotic until next Sat. Just went down on the bicycle. Have to try.
Have you tried a dating site yet?
Much love back, g

____________ ❤

 

2 Comments

Posted in Connections, Uncategorized

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