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.

Deep Gratitude

When I was first introduced to Christian Nataline, we had three notable things in common: lung cancer, an ALK mutation and the fact that Dr. Alice Shaw was our oncologist.

Chris immediately reminded me of my oldest son, August. It was also obvious that he possessed a scrappiness not unlike my own. Because of our age difference, I felt protective of Chris, but understood that we were compatriots; fellow travelers in that strange place called cancer.

In the seven years that we have been friends, Chris and I have talked about almost everything under the sun. I have learned a lot both about and from Chris, and it has been my immense pleasure to see this young man grow from someone who was angry and afraid into someone so very self aware and strong.

Chris has hit a rough patch, with improvement in his lungs but additional mets to bone and brain. And yet he’s meeting this fresh challenge with aplomb and formidable grace. This morning he sent a message out on Facebook and I was struck by his mention of both privilege as well as noting the contribution that previous cancer patients have made. It touched me immensely and I asked him if I could share.

One of my favorite photos of Christian with his daughters.

Good morning everyone.

I just wanted to thank everyone for praying, following and supporting me over the the last 7 1/2 years.

I love my life. Sure I’d love to be cured but other than the obvious my family and friends and our earth are my reason to fight. There are too many of you who I care about to lay down my sword and give in. I’m fighting this disease for myself and my family and for the ones who have or will be diagnosed with cancer in the future.

I feel obligated and privileged to be one of the lucky patients who get the opportunity to be part of clinical trials that will eventually lead to a cure for myself and to save you or your loved ones but I couldn’t do this one on my own.
My doctor Alice Shaw from MGH is the leading Lung Cancer specialist in the world and she’s been there for me since day one. She calls me on Saturdays and weeknights after 14 hour days and to have her in my life has been a godsend. She has been so supportive and hopeful even when the waters are dark and the waves roll in. She’s the buoy in the open sea that keeps me from drowning alongside Melissa Johnson in Nashville at Tennessee Oncology–which has more trials available than any other state in the country.

And I can’t forget my team in Orlando at ORMC including Jennifer Tseng and Dr. Rama Krishna–my oncologist and radiologist in Florida who keep me stable and make sure the procedures are keeping me healthy and upright while I wait for the next life-saving medicines. It takes an army. The scientists all over the world are the reason I’m doing as well as I am today with all of their extremely difficult occupations in a race against time and road blocks. I’ve been getting medicine that the majority of people in the world don’t have access to so saying I’m grateful for them is an understatement.

Angel Flight has been a pivotal tool in my survival. Without them I wouldn’t be here and the fundraisers have saved me from losing everything multiple times so I owe my life to all of you. My family hasn’t given up on me even though I’ve said and done things out of fear and anger but it’s only because the thought of leaving this world sets my insides on fire. I don’t have enough skin on my back to return the favor to the hundreds of people who have reached out to save my life BUT THANK YOU for taking interest and not turning away from my struggles. I know it’s depressing at times and scary and overwhelming but I’m an open book. It’s been empowering to be in a position to pave a path for those who need life-saving medicine.

Rest in peace to the people who we have lost over the last century from cancer. They have opened many doors for myself and everyone who is fighting today. They haven’t passed away in vain. They’ve led the charge just like those who were drafted in wars over the years. We can’t run away from cancer. We have no choice but to fight with every breath for the sake of our lives and for everyone on this planet so we can return to our families and grow old with them. There is no retirement in this field until the cure is found but it’s coming. I promise you that.

#steadasshegoes #neversaydie #love