Me me me me me some more

Time for a mega update. Too-too much so I best break it down into categories.

First (always first), my family. I’ll start with the youngest, Mr. Peter Duff. This kid of ours just finished his second year at MIT, where he is majoring in Environmental Engineering. He has maintained a respectable GPA as well as a relationship; we all ❤ Olivia. Over the summer Peter is working in a lab and also as a counselor at Camp Kesem MIT, the free camp for children who have been impacted by a parent’s diagnosis with cancer.

Next up, August, age 32. My middle son has been living in Colorado for the past sixteen years and for all sorts of selfish reasons, I’ve been urging him to return to the East Coast. Well, his stepfather gets the credit on this one, as he convinced August that his expertise as an extractor in the cannabis field will come in mighty handy now that Massachusetts is rolling out legal weed. Aug and his lovely pooch Lily are temporarily bunking with mom as he gets his business plan up to speed. To say I am thrilled doesn’t begin to approach understatement.

Thirdly, Jemesii, both the eldest and by default, my favorite daughter, remains hard at work on the management end of things at December Thieves–an uber hip boutique on Charles St. For those of you visiting MGH, it is a short walk away and all sorts of fun, even if you merely window shop. Jem is way too busy and I hardly get to see her, but a week ago we grabbed lunch/caught up–always a treat.

Next up—seeing the world. In November I had the opportunity to travel to Peru thru a fellowship with an organization called A Fresh Chapter. For two weeks I communed with my fellow travelers (cancer survivors all) and volunteered in the local community. I now refer to my life as BP (before Peru) and AP–after Peru. This experience (thank you Terri <3) blew my life apart in a way I never could have imagined. Eyes, heart and mind wide open–I was offered a special window into both another culture and the suffering of others. Already pretty adept at ‘it could be worse’ I came back with a reboot on just how fortunate I have been/am. Life’s not fair and working in a kitchen at a cancer hospital in a poor section of Lima (no hot water, no toilet paper, no soap) was the most humbling experience of my life. That little kitchen turned out the most phenomenal meals with the meanest of ingredients for both patients and their families, many who would bring a plastic carton so that they could take the leftovers home. I would leave my morning shift exhausted both physically and mentally but also oh so elevated after experiencing some of the best of what the human spirit has to offer.

When I returned home from Peru I hit the ground running, art-wise. I’d had a solo show lined up for almost a year but, true to form, had procrastinated. It all worked out in the end as I spent six obsessive weeks cranking out sixty plus pieces. My friends turned out in force opening night; even flying in from DC (thank you Sally). My sister Bink came from Colorado and surprised me by bringing along my eldest son, August–who hadn’t yet made the decision to move to Massachusetts. It was an exhilarating experience all around, and I owe a big thank you to my friend Marc Mannheimer for making my first solo show (titled Found) possible.

In the midst of this busy-ness, I also plunged into online dating. If you want all the details you’re going to have to buy the book (no, I’m not joking—book is coming). However, suffice it to say that it’s all been a grand adventure. I’ve corresponded with/met many fine individuals and along the way have learned a lot about the human heart (mine and other’s). For the past few months I have been seeing one individual exclusively and last week I was treated to five days  in Montreal as part of the annual jazz fest; one heck of a good date.

And of course I’ve made time for advocacy. A guest blog for Harvard Health, some media opportunities with Harvard Magazine and O Magazine.  Plus travel to DC for a gathering on the hill with my fellow advocates from LAB followed by the annual LUNGevity HOPE summit. I’ve also been engaged with Harvard Medical School both as a speaker and a member of an initiative through NEER to learn more about exceptional responders. And I was elected Vice President of ALK Positive, a phenomenal group of advocates that maintains an international online support group for ALK+ patients and their caregivers in addition to raising funds for research into the mechanisms of ALK+ disease. Currently partnering with LUNGevity, the ALK Positive group announced three recipients of the new ALK Positive Lung Cancer Transformational Research Award in early June. It is an honor as well as incredibly exciting to be part of this initiative.

I’d be remiss not to mention that all of this has been made possible by the fact that my cancer remains stable—four years and counting. And rumor has it that lorlatinib, the experimental therapy I have been on since late May of 2014, is about to get FDA approval. Woohoo!

ps: My memory is still the devil and I forgot to add a two week trip to Colorado for my annual reunion with childhood friends as well as my niece Shannon’s wedding to Michael Payne. It’s always good to get back to the environs where I spent my childhood and better yet to spend quality time with those I love!

 

Words matter and this one’s gotta go

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Yesterday was National Cancer Survivors Day, and I just went meh. Wait–make that hell no.

I don’t ‘do’ Survivors Day. My lack of enthusiasm is manifold. First of all, cancer is not a damned day. For many of us, there is no life ‘after’ cancer. Nope. As I’ve said before; been there, doing it. This is present tense.

And then there is the word survivor. I loathe it. Survivor is too much, too little, too late. If you haven’t stopped to read the definition of survivor lately, let me refresh your memory:

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Yuck. Who wants to be the ‘person remaining alive after an event in which others have died.’ Or the ‘remainder’. I suppose someone who ‘copes well’ is a good thing but then again, a rather serious understatement when you are talking about cancer.

The word ‘survivor’ is inadequate. It is also implicitly negative/ugly. No one wants to be ‘the sole survivor of a massacre’–we want everyone to survive. Ever wonder where survivor guilt comes from? Look no further.

In the past I have referred to myself as ‘surviving cancer’. The verb vs noun thing seemed to better capture the fact that I am now and likely always will be in treatment.

However, after thirteen years of surviving, I’m sick of this shit.

From now on, I reject both verb and noun in favor of a far more positive/forward thinking term. I am living with lung cancer.

And you know what? There is no guilt associated with being alive. If you’re not already there, join me.

xo

 

For all you tough mothers out there

Check out that slogan 🙂

Happy Day; this one’s ours.

Like all holidays, it feels a bit bittersweet. A reminder of good times but also bad.

Four years ago I took my first dose of lorlatinib (image from that momentous occasion shown above). Several days later I started coughing up specks of blood. By the morning of day six, my hemoptysis was significant enough that Dr. Shaw asked me to come to MGH for an emergency CT scan just to rule out a pulmonary embolism.

As I was getting ready to go to the hospital, a call came in from Utah, where my mother and stepfather lived. It wasn’t yet daybreak there so I knew something must be wrong. My stepfather was on the other end of the line and he began to cry as he told me that my mother, Evalynn, had passed away in the night.

Mom, gone.

I fought back tears and panic both as I drove the hour into Boston. My daughter met me at the hospital and when the tech emerged post scan I jokingly asked ‘so is my cancer all gone?’ No, but almost. And the blood? Likely a result of rapid tumor necrosis.

And then my heart broke because the person I wanted to call first was no longer here.

However, grief was side by side with joy: I was going to have more time to spend with my three children; Jemesii, August and Peter. Being a mom is the one thing that keeps me going no matter what—my raison d’être.

In three weeks one of my (now adult) children will be moving back in with me. The reality is, he still needs his mother. And I am absolutely thrilled that I have the privilege of being here. For him. For me. For life.

Kumo and I pay a brief visit to the Ivy League

Or rather, they paid us a visit, as I had the privilege of being interviewed for a story in the May/June issue of Harvard Magazine. The news just came through that I am a cover girl as well.

The article, Targeting Cancer, features Harvard researchers, including my personal goddess/oncologist, Dr. Alice Shaw.

Jonathan Shaw, the managing editor of Harvard Magazine, has written a marvelously comprehensive overview as to where the treatment of cancer is currently but also the directions in which it is heading. Says one researcher about acquired resistance: “We’re not going to get there in one fell swoop…We’ll get there by keeping people alive longer and longer, until eventually, it becomes a numbers game where the goal is to eradicate all the tumor cells and leave none behind that have drug resistance mechanisms that allow them to escape.”

It is the sort of heady stuff that inspires hope, and a potent reminder that some truly great minds are in this battle with us. And, that in this numbers game, each day is a little victory.

THIRTEEN BOFFO YEARS AND COUNTING

Damn. I’ve been so busy living (!) that the thirteenth anniversary since my diagnosis with lung cancer–on 4/5/05–just whizzed right on by.

Totally unnoticed.

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Lucky Thirteen

And really, that’s how it should be. It’s the journey that counts, right? And I am enjoying one hell of a scenic ride. Art, advocacy, a little bit of loving (more on that later–wink, wink). Up to my neck in the wonderful details of this one and only life that I call mine.

Which is not to say I’m taking anything for granted. No, far from it. I still begin my days with ‘I’m alive, I’m alive, I’m alive.’ And now I am apt to add in “I’m in love, I’m in love, I’m in love.’

I think it is no coincidence that live and love are separated by only one letter. In fact, i directly precedes o both in the list of vowels and on my key board. I am wont to sign my personal missives ‘love, Linnea’ but quite often I hit the wrong key and instead type ‘live, Linnea’.

I am also delighted by the fact that my personal goddess/oncologist Dr. Shaw is named Alice. C directly precedes v on the keyboard and once again, It is not uncommon for me to type Alive rather than Alice.

It’s all so nice. As is being both alive and in love (with life) thirteen years post diagnosis–at least a decade longer than I or my oncologist once thought possible.

Thank you innovative medical research. And keep up the good work. I’ve got plans; big plans.

live, love, Linnea

A guest

Y’all, I have been invited to write a couple of guest posts for Harvard Health Blog and the first one is up today. Please read and better yet, leave a comment! xoxo

https://www.health.harvard.edu/blog/when-dying-is-a-rebirth-2018031913413

O yeah

So I suppose I’d be remiss not to mention that Alice (Dr. Shaw) and Linnea (moi) are featured in an article in the March 2018 issue of O, The Oprah Magazine.

It’s a solid to have the subject of lung cancer receiving notice in a major publication such as O, so thank you Ms. Winfrey 🙂

And for those of you without access to the print magazine, O has put the article up online as well: Thanks to New Science, Lung Cancer Patients Are Living Longer Than Ever.

I’d also like to express my gratitude to the author of the article, Leslie Goldman.