Category Archives: ALK mutations

So this is pretty fabulous

I want to share something wonderful with you. As a member of the ALKPositive group, I offered to start an Instagram page where photos and stories of ALK+ patients could be shared. I knew it would be special but I had no idea how special. Nor did I realize how moved I would feel as I transcribed these individual stories of suffering but also formidable grace and courage. So many beautiful faces. Almost all of them stage IV. Far too many of them young, including a number of women who were diagnosed either while pregnant or just after giving birth.

But what shines through the most? Love. Lots and lots of love. Please go to Instagram and check it out at alkpositiveworldwide. Follow us. If you are ALK+ (or if you have lost someone who was–this is intended to function as a memorial as well) and you’d like to be part of the wall, submit a photo to me as well the following information: Date of diagnosis, stage and age. And a brief statement about living with ALK+ lung cancer.

This is our opportunity to show the world the faces of lung cancer. Brave, beautiful, loving, living, finding ways to cope and always, always hoping.

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.

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.

The pass it on power of media

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 🙂

 

In gratitude

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So I’m about to tell you something that is either going to make you laugh or cry. Or not. Maybe you’ll just want to punch me in the face.

Sometimes I get really, really tired of being grateful.

Awful, isn’t it. I know how flipping lucky I am to be alive and most days, my gratitude is boundless. However, twelve years of being grateful for something most people take for granted (waking up in the morning) actually can get old.

As a cancer patient it is expected and accepted that you will feel all sorts of less than pretty emotions. Anger, sorrow, frustration, fear. Confusion. Depression. Bone deep weariness. All taken in stride.

But ingratitude?

The minute I start feeling anything resembling self pity I quickly self admonish. Because I am only too aware what the alternative is.

Those of us with terminal illnesses set the bar both impossibly high but also brutally low.

There is a self conciousness to life when every moment is fraught and at times I dearly miss the insouciance of before. As in, before cancer. The self awareness I have gained has been prompted by significant and persistent provocation. I am both wiser and sadder. And some mornings I’d just like to skip that part about being grateful.

Not because I’m not, but rather because there was something glorious about being so certain that something was due you that giving thanks never even crossed your mind.

I am beyond either innocence or assumption. And that’s ok. I have scans tomorrow, and an appointment with Dr. Shaw next Tuesday. The scans I could do without but the appointment with Dr. Shaw? There is no place I’d rather be. And yes, I will be feeling enormous gratitude.

The downstream effect of two miracles of science

My friend Dr. Tom Marsilje wears a number of hats–devoted parent, dedicated scientist, cancer patient and absolutely amazing advocate/activist.

Tom holds a special place in my heart and personal history but sometimes I have to stop and remind him; we both suffer from chemo brain, a subject he recently covered in his column for the The Philadelphia Inquirer.

He was in town briefly last week so we met for lunch and a photo op in front of Miracle of Science in Cambridge. I mean, how could we not.

Linnea and Tom: two miracles of science

Linnea and Tom: two miracles of science

After snapping our selfie we headed down Mass Ave to Flour, one of my favorite little cafes. Lunch banter was about any number of things including Tom’s relatively new role as a writer, and he noted that it makes him feel good to be really making a difference. I just looked at him incredulously before exclaiming “Dude!”

At this point I should remind you that Tom codeveloped LDK-378, the second ALK inhibitor I was on trial for. Also known as ceritinib and now marketed as Zykadia.

I then used my finger to draw an imaginary line on the table. “This” I said, “is my lifeline. And this is where I started taking ceritinib. No ceritinib and my lifeline stops right there.” And then, for further emphasis: “I am alive because of you and don’t think I ever forget that, even for a moment.”

By this point I was getting a little weepy. I went on to say that if Tom were a war hero rather than a scientist who developed a lifesaving drug for a pharmaceutical company, than his role would not be so seemingly anonymous and that he would be celebrated. But that the lack of accolades in no way diminished what he had already accomplished, which was to extend the lives of so very many ALK positive cancer patients. Including yours truly. And that I was grateful to the moon and back.

Such a tight connection between the individuals who come up with these drugs and those of us who take them. A lot of cause and effect going on there and to think that Tom and I would have the opportunity to also develop a human connection is just way, way cool. This guy had my back long before he ever met me (but must of known of my existence as an ALK+ individual). Gotta say I’ve got his back now but sometimes that just feels like hanging onto contrails as he’s jetting around with astounding energy and putting his fine intellect and experience to work as an advocate/activist for patients with advanced cancers. I feel both honored and blessed (and damn fortunate) to have him in my life.

Which leads me to this closing thought: maybe we should nave a national hug a medical researcher day. Followed by a bunch of bang up fundraising.

xo