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I am a champion withstander. Without a doubt, my lung cancer was already established almost 20 years ago when I first became symptomatic. It would take almost four more years to receive a diagnosis.

Within two weeks, I’d had a lower left lobectomy, followed by four rounds of cisplatin and taxotere. I was a hale and hearty 45, but I was knocked on my butt.

Since then, my treatment regimen has been tarceva (before we knew I was ALK+), crizotinib, ceritinib, carboplatin and pemetrexed, more crizotinib, lorlatinib, lorlatinib plus carbolplatin and pemetrexed, and my current trial, DS-1062 a.

There have been some good years–with crizotinib and lorlatinib allowing me to live almost normally–and some tough ones. I’m coming off a tough one now.

Day four post infusion and I still feel as if a big wave dashed me to the bottom of the ocean floor. It is a physical sensation but also emotional. However, in the little chats I’ve been having with myself, I continue to reaffirm that this shall pass.

I now have at least a month in which to recover and to become stronger. Of course, my cancer will have a similar agenda. That’s the tricky part.

However, in the absence of chemotherapy coursing through my veins, I plan to do my darnedest to boost me, myself and I. I for immune, I for eyes on the prize, I for I shall not only withstand, I shall prevail.

In the meantime, if any of you have any recipes for immune boosting meals and/or magic elixirs, please do share. And come January, I’m going to try to kick this cancer to the curb.

Anti-gravity

Or how to be up when you’re down. A palindrome of a concept, if you will. Sort of like the joke Jem and Aug made up when they were wee: ‘Why did nothing cross the road? Because nothing wanted to.’

If you follow. The yes and the no and the can and the can’t all at once.

The living while dying, which we all must do but some of us faster than others. The slippery slope.

It is easier to stay on the upside when one is feeling well. And safe. And cared for. Currently I am struggling with all three. Oh to have a fire to light, a bathtub to crawl into, a partner to bring me a cup of tea.

These are flights of fantasy, and hardly top shelf. When I can muster the energy, instead I imagine lying on a deck chair somewhere. Warm breeze in my hair, cold drink in my hand.

And yet I remain the master of ‘it could be worse.’ Last week my therapist countered with ‘but yes, it could also be better.’

It will be. It must be. And I am the one who will make it so.

Between the lines

Radiology reports have been seemingly impacted by the pandemic. Whereas they were once released as soon as I had a post scan consult, it now takes a week or more for them to pop up on Patient Gateway.

What my oncologists infer from my scans carries more weight, but nonetheless I like to read the reports.

Today the use of language struck me. Although this was describing my physical self, some of the same vocabulary is pertinent in an emotional sense.

From the troubling–degenerative changes and post traumatic deformity–to the potentially political: slightly shifted to the left. And then what is a negative when describing cancer–persistent–a positive in another context.

The conclusion is comforting however you view it: essentially stable.

And it’s accurate, as well. Neither great nor awful. Hanging out. Hanging in. Holding on.

Full spectrum

I am tough. Fucking tough. But also tender. And, at times, exquisitely so.

Perhaps this represents a healthy balance. But, of course, it is not quite so simple.

Once upon a time I told my mother Evalynn that just because she would do anything for me, it didn’t me she could do anything to me. It is not, I explained, like mixing hot and cold water in order to get warm.

Evalynn had no idea what I was talking about.

And me? Well, my life continues to be one of extremes. All or nothing, sometimes literally.

It’s not boring but damn, what I wouldn’t give for a bit of monotony. Humdrum. Status quo.

In medical parlance, unremarkable is as good as it gets. ‘Not particularly interesting or surprising’ according to the Oxford Dictionary.

Predictable. Tedious. Dull.

Yeah. Give me one of those. And if that means not shaken, but stirred, well, ok. I’m down with that.

To mendacity.

xo

On being a weirdo

I don’t think like other people do. I know this because those other people have told me so.

As a child, I certainly did not consider this a virtue. Shy, socially awkward, and not at all self assured, I was only too cognizant of my square pegged-ness.

The remarkable thing is, I grew into myself. Just like my outsized feet–which provided a hint of the height I would eventually attain–I am now more than comfortable in my own skin.

In fact, I like being me. A lot.

I believe this is because I own it–this me-ness. Or, as I said to my daughter yesterday, ‘Love the one you’re with. Yourself.’

There is no question that I am still weird, if quietly so. But I am also extraordinarily self confident, which I define as understanding both one’s strengths but also weaknesses.

I am also really good at passing–I fly that freak flag low. And one of my super powers is I really don’t give a fuck as to whether or not someone likes me.

Now if I were antisocial, that might be an issue. However, as I love people, most of them love me back. The perfect antidote to no fucks given. But I also don’t waste time trying to figure out how to fit into someone else’s agenda. This is both freeing but also means that I come across as genuine–not a bad thing.

This life of mine is imperfect and in the best of times, a bit of a mess. However, like some well worn and beloved sweater, it just feels right. Holes and all.

xo

All in a day’s work

Today is World Lung Cancer Day.

I don’t do days. Weeks, yes. Better yet, fifteen fucking fabulous years and counting.

Life wants to live, and I’ve had a good long time to get in touch with my survival instinct.

The last six months have tried me. A global pandemic and some gnarly side effects. Too much time alone with not a hell of a lot going on in the excitement department.

That’s alright. It’s been a fresh challenge. I’ve whipped those side effects into almost total submission. And, more importantly, I am learning once again to take joy in the sublime.

Unfortunately, it doesn’t actually get easier—surviving. Which means we have to get stronger.

My goal is to continually lead a more purposeful life. I can be a bit of a wastrel and frankly, this brave new world came with no guidebook. I have maxed out on diversions. The good thing about a short attention span is that even the bad habits get old fast and I’m ready to get serious again.

But not too serious. I’ve got a blonde buzz cut, a space between my front teeth, a hell of an attitude and lung cancer. My disease is not, and never will be, me.

Live, Love, Learn, Linnea

xo

On Purpose

I realized a few days ago that for the bulk of my life, I have lacked solid goals, either going along with what someone else wanted or making do with the cards I was dealt.

As choice has often not been part of the equation, this has been a reasonable response. However, a week ago I suddenly had a vision of what I want.

Land. A piece of land—maybe up north in Maine. Enough acreage so that I could give each of my three children a parcel. Sort of a mini farm. With goats and chickens. Well water, gardens, a clothesline. A studio that we all could share. Our own little compound.

I texted the kids with an outline of my fantasy and gratefully, they each wrote back immediately to say that they loved it.

Of course this is a wild assed plan, given my current financial state.

However, that could change. If my health holds, I intend to get into the regular practice of art again. And I will write my book.

Whether or not any of this comes true I already feel a stir of excitement. It’s as if I have finally located my true north.

A purpose that is strictly personal.

What pleasure.

xo

And these are life lessons

So. I want to have a little chat about love and will. Love first.

The last five years have tested my heart in ways I never imagined. My interpersonal relationships, once tied up in a tidy package called family, totally unravelled in the summer of 2014. My mother died several days after I took my first dose of lorlatinib. A month later, I was served with papers and my divorce moved from somewhat amicable to highly contentious.

The initial side effects of lorlatinib (I entered trial in the third cohort, dose escalation phase) were unanticipated and horrific. Arthritic neuropathy so severe I awakened one morning to hands that felt like blocks of wood. Hallucinations at night, a sense of disorientation and unreality during my waking hours. Emotions that were both unfamiliar and impossible to modulate. An inability to recall much of anything including wide swathes of the past. And my short term memory was totally fried; I could no longer think in a linear fashion and became incredibly disorganized.

I was alive but a friggin mess. Struggling with the details (cooking, paying bills, getting through that awful divorce) while also adjusting to a totally different lifestyle.

Eventually I began to revel in my freedom and the fact that I was feeling physically strong again. Sadly, my increased irritability and lack of inhibition meant that I got into arguments with far too many people. Some would come to understand that this was beyond my control, others have yet to forgive me.

It was, at best, an imperfect life. At times I was incredibly sad. But I would drag my ass out of bed every single day and go outside and walk. Sometimes for miles and miles, taking in the (also imperfect) world around me.

I was learning about unconditional love. I didn’t need to be cancer free, my relationships didn’t need to be shipshape, my home could be in disarray. I loved life and eventually came to truly love myself as well. Before long I realized that simply being ok was enough. More than enough.

And of course while I was being schooled in unconditional love I was also coming to understand the role of will. There were times (many times) where I thought it was all too much. One crisis would be followed by another and I was dogged by depression. However, I began each day with ‘I’m alive, I’m alive, I’m alive’; my form of litany and a sincere expression of both wonder and gratitude. I also kept walking–convinced that being physically strong was one way I could take back some control.

Eventually my brain began to heal; old memories like a field that had been scorched but now sending up fresh shoots. And just as I was growing stronger physically, all the trials and tribulations were building emotional muscle as well. When I would go to the gym with my son August he would encourage me to always push harder. ‘It’s not going to help until it hurts’ he would say. Oh how true; how applicable to life itself.

So here I am. Once again facing the unknown and yet, as prepared as a person can be. If will alone could keep me alive, I’d be immortal. It can’t and it won’t but I have no doubt that a strong will is only a good thing. And life? Well, as my love is unconditional, it shall not disappoint.

This is life

It occurred to me some months ago that one of the you can’t win for losing aspects of cancer is the accompanying stress. A diagnosis, progression—just living with this shit—it’s all incredibly anxiety making. And you know what? That is to the cancer’s advantage, but not to ours.

I am certain stress has such a deleterious impact on our immune system that it exacerbates malignancy. Yup. Cancer really has the upper hand as it not only fucks with our cells, it fucks with our heads as well.

That is, if we let it.

Cancer may kill my body but it will never get my spirit. I have decided, yes, decided, that I’m just not going to let my progression get me down.

Crazy maybe, but so far, so good.

To wit. The week before I travelled to Italy (trip of a lifetime!) I went on six dates. That’s right–seven days, six dates, five different people. And I found a place to live.

The three weeks in Italy? Could not have had more fun. Ate a ton of pasta, drank way too much wine, and had gelato at every opportunity. Walked a minimum of six miles each day and actually lost weight. Also wrote and submitted an abstract as I am heading to Barcelona in the fall as faculty at the next IASLC annual meeting.

I hit the ground running upon my return, as I have begun to pack for the upcoming move. I’ve already been on two dates (one the night after I returned) with two more before the week ends. On Friday I will be presenting at Harvard Medical School and on Monday I fly to NYC to speak at GE.

My cough reminds me of what is going on in my chest but determination is keeping me from dwelling on it. The goal is to stay strong enough to live with my cancer until the next effective therapy comes around.

And in the meantime? I am living large. Over the top, unrealistic, and totally blissed out. Not a bad way to go. Wherever it is that I am heading 🙂

Throwing shade

Just go away, you sticky little bastards.

I talk to my cancer, and that was this morning’s heartfelt greeting.

Yes. After years of hardcore warfare, my body the battle ground, I’m trying another approach.

Not a surrender, not a truce, but rather one in which I attempt to understand where the enemy (that would be cancer) is coming from. Not go high, go low.

It’s such a bizarre concept, my own cells run amuck. Unlike a virus, which can jump hosts, when I die, my cancer dies. Lose lose. Total annihilation.

Of course, it’s wrong to assume that this is not an end unto itself; The End. I mean, we all know this planet’s getting crowded. Of course, in this particular case, it sucks to be part of the solution.

I also think that part of the genius of DNA is the possibility for error. A consistent state of stasis is one big drag. Given the rate at which DNA replicates, errors of transcription offer fresh possibilities. Mutations allow life to evolve but they certainly can wreak havoc on an individual organism.

Which brings me back to my morning conversation. At this point I am at some sort of personal ground zero. Not emotionally (I am fine, really fine) but rather at a loss per how to address these errant cells of mine.

As captain of this ship, I can’t help but feel that a mutiny is under way. “If my body goes under, you go with it.” I tell these rogue cells. “Your ways are self serving and short sided. By gobbling up everything, you shall kill us all.”

Of course I see the parallels—what we humans are doing to the earth is not so very different than what my cancer is doing to me.

“What’s the point?” I say. “Why can’t we all live in harmony?”

These little bedside chats are my attempt to stay reasonable. But cancer is beyond reason. If I am to survive, I’m gonna have to fight–probably dirty.

Hey cancer, nobody likes you.

Cancer, well, cancer don’t care. And that’s the flipping problem.