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To you, dear cancer

*thank you http://www.bigwheelpress.com

In which I express my sentiments in the clearest language possible.

Yep. Had I my druthers, this relationship would be over. You, evicted; kicked to the curb. And then kicked yet again, hard. One big take that, you creep. 

Tenant from hell, you are. Sneaky, freeloading, destructive little shit. Totally without consideration for your host. Seemingly intent upon destroying the only home you’ve ever had.

Thing is, you underestimated me. 

Once upon a time I was both hesitant and more accommodating. No longer. Our incessant discord has remade me. In order to survive I have become fearless, fierce, ferocious. In this perverse game of chicken, I shall not swerve. And if I cannot shake you, I’ll take you with me.

That’s not a threat, it’s a promise. 

love, Linnea

Going in

So tomorrow is the big day; my fifth needle core biopsy.

Rather like a space probe, the purpose of this procedure is to look closer; to learn more about the nature of my cancer so that we may make informed treatment decisions. 

My very first biopsy was the most memorable. Four days earlier I had heard the word neoplasm for the first time. In the days hence, I had read up on lung cancer. The statistics were dismal but my differential diagnosis had left room for other conclusions–a recalcitrant pneumonia or a fungal infection.

When they wheeled me to the biopsy room, the patient before me was a prisoner; cuffed and accompanied by two officers. The physician who performed the procedure first marked the point of entry with a black dot–a dark star of a tattoo. As he guided the needle between my ribs he studied the image on the CT scanner and remarked ‘I am almost certain this is a fungal infection. There is no way a young non smoking woman such as yourself could have lung cancer.’

Post biopsy I was to lie still without speaking for several hours. This was made more difficult by the fact that one of the attendants recognized me–she had been a clerk in a store I patronized–and she, apparently unaware of my restriction, kept trying to engage me in conversation.

The next morning my world turned upside down, when I learned that the radiologist was so very mistaken. Young, non smoking women such as myself could get lung cancer.

My next biopsy was almost three years later. It confirmed metastatic spread and I, a IB at diagnosis, was restaged to IV. However, we would also learn that I was positive for an EMLK 4-ALK fusion gene; ALK+. Four months later I went from having no options to enrollment in my first phase I clinical trial, for crizotinib.

Three years later, prior to enrolling in a phase I trial for ceritinib, I was biopsied yet again, in order to better understand my mechanisms of resistance to crizotinib. An acquired secondary mutation, S1206Y, was identified.

After progressing on ceritinib, I had yet another biopsy. The hope was that I would be positive for PD-L1, making me eligible as an early participant in a clinical trial for immune checkpoint inhibitors. Disappointingly, I was not, however it was revealed that I had now acquired yet another secondary mutation, G1202R. This particular mutation was more problematic than S1206Y, as it conferred resistance to all available ALK inhibitors and it was at this point that I returned to chemotherapy, carboplatin and pemetrexed, until lorlatinib (which shows efficacy against G1202R) became available in trial. Some of the tissue from my biopsy was used to attempt to start a cell line as well as build a mouse model of my cancer, but neither proved successful.

So, here I am, once again at a crossroads and seeking direction. Tonight I will sleep at my friend Diane’s house and in the morning she will drive me to MGH. I look forward to the anesthesia (yeah, I’m kind of a sensory freak and I’m not gonna lie, I like going under 😉 ) but I dread the part where you wake up with a dry mouth and then have to lie there unmoving/not speaking. If the biopsy is uneventful, I will go back home with Diane. However, every other time I have suffered a partial pneumothorax (collapsed lung)–a ticket to one night’s stay in the big house.

It is what it is. I am a traveller who’s had a long run on a clear stretch of road; for that, I am exceptionally grateful. Now it’s time to get my bearings and to figure out the best path forward.

xo 


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I go off to Nashville and then just off

I just had the privilege of sitting on a panel at the first annual COE (Centers of Excellence) summit hosted by the Bonnie J. Addario Lung Cancer Foundation along with four other patients with personal experience as participants in clinical … Continue reading

But I’ve got this going for me

My birthday card from my son August. (and a photo bomb from Kumo)

Scrappy as hell, y’all. And a persistent terminal optimist.

After writing my last blog, I had to drive into Boston for an ultrasound. Think johnnies, stirrups, probe. No no fun. And yet, as I lay there on the examination table, I kept saying to myself ‘I’m alive, I’m alive, I’m alive.’ And after the procedure, when it took me an hour in rush hour traffic to drive from Chelsea Mass to the Prudential center in Boston (six miles) I kept repeating it as well.

I get down, really down at times. But I don’t stay there.

Sometimes this takes a formidable amount of will. Depression has shadowed me since childhood. To that end I take an antidepressant and have had a standing appointment with the same (wonderful) social worker for a decade now. But the fact is, my life is fertile ground for sorrow and hopelessness both.

Knowing this, I fight back. In little ways, but ways that matter. When people ask me how I am doing I almost always answer ‘great’. When I fill out the patient reported outcome intakes at every oncology appointment, I give quality of life the top score.

I’m painting and writing and, with only some hesitation, planning for the future. I’m even still (and if this isn’t optimism in the face of progression, I don’t know what is) online dating.

So there you go. In two weeks I’ll have a biopsy and thereafter a better idea as to what the plan of attack is. But in the meantime, I’m not twiddling my thumbs.

Just thought you’d want to know 🙂

OTSD

Ongoing Traumatic Stress Disorder.

I have it. There is no way in hell I could not.

Fourteen years of dealing with my own impending mortality. That one, I sort of have a handle on now. Not easy, but understood.

But the others. All the other people I have become so extraordinarily close to and then lost. Dozens. A hundred. More. Goddamn it hurts. And hurts with the knowledge that it is not going to stop–this ongoing loss.

There are reasons why I insist on embracing the battle metaphor. Cancer really is a war and I have been in active duty for far too long now. On the front lines against an enemy that gives no fucks. A relentless, nihilistic, take no prisoners foe.

Alive but with the knowledge that the only option open to me is to keep fighting. Even on days like today when I want nothing more than to have someone hold me close while I simply weep.

I am bent. Bent with grief. Wracked with sobs. Tired. Oh so very tired. But always battling; for me, for them, for all of us.

Rest in peace my friends. Now rest.

Giving Tuesday

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.

❤

I did it again

Got older, I did. Woke up this morning to the ripe old age of 59. Yup. A feat that not so long ago I thought impossible.

Now I’d be lying if I said it was getting easier, this having of the birthday. Like that throw away phrase ‘just breathe’, what may be easy for some is a hell of a lot harder for others. But I’m determined to keep doing it, for as long as I am able. Possibly longer.

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Yesterday my friends in the lofts threw me a surprise party. Both my sons were in attendance as well and it was a really special treat.

This morning I left my house at 6 am for my annual mammogram. Later today I see the vaginal/vulva specialist to address some uncomfortable side effects potentially related to treatment with perhaps a bit of aging thrown in. Pressed, poked and prodded. The indignities of keeping it all in working condition. But, viewed in another light, a privilege.

I love this body of mine. We’ve been through a lot together with more to come. And the least I can do is to try to take care of it.

To that end, August and I will head to the gym later today. And then this evening we are going out for sushi and perhaps a show. In most respects, just another day. Which is exactly what I wished for/wanted 🙂 .

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