Balance

I cannot do cancer all the time. Given the fact that I never intended to spend a moment with the big C, this is not so remarkable.

However, cancer has a way of screaming ME ME ME.

Ignoring it is not an option. Seeing it lurking over in the corner but carrying on as if it is not in the room is.

Two weeks after my second vaccine I began to get a taste of life as I remembered it. Suddenly I could hang out with friends who were also post vaccine. Cooking dinner for Jim. Fried clams at Woodman’s in Essex with Bill. A weekend in Maine with Annie. Aperol Spritz’, oysters, great wine and lemon linguine at Marc’s. Dinner, dog walks and blood draws (really) with Diane. And a visit from my friend Bradshaw–who drove eight hours to get here–along with his pooch Lulu.

Balm for an extrovert’s soul.

In the meantime, the Linnea hackathon continues; I’ve submitted plasma for genetic sequencing and on Friday I presented my medical history.

Interesting times, these. I am grateful that I feel better sans side effects and that I can now interact with a select few of my fellow humans. And that spring is coming at us. Which will soon be followed by summer.

It is all reason to be optimistic.

Diane is back in town!

The photo is from an event Diane and I did a couple of years ago for Blueprint Medicines. Back in the day, when we could still do events.

I moved to Amesbury, MA in December of 2019. I was escaping a bad housing situation (landlords, oh landlords) and also moving across the street from one of my best friends (Diane) at a time when I could use a best friend close by.

And then the bloody pandemic struck. Diane, who is also living with stage IV lung cancer, made the decision to relocate to her home in Maine, where she would be more isolated/protected. I totally understood but was also heartbroken.

Truth is, even if she had still been across the street, we would not have been able to interact.

Diane is the reason I was able to get vaccinated when I did–as she got me on a list for end of the day (no shows). It would take weeks longer to find a similar situation for herself.

Anyway, last Monday she was two weeks out from the second vaccine and moved back across the street. And my happiness quotient immediately went way up.

My bubble remains a small one but damn–after a year of near total isolation, hugs are golden. And now my three kids have all gotten their first vaccine. When he is two weeks out from his second, my oldest son will be flying in for a much overdue visit.

The bleakness of the past year is slowly leaching away. In its place, buds, birds and blooms. Spring. And hope for a slow and measured return to something akin to normal.

SWEET SIXTEEN

And….I didn’t even notice. Passed me right by like just another day. Which it was. Except for one minor detail: it has now been SIXTEEN ASTOUNDING YEARS since I was diagnosed with lung cancer.

That’s right. It’s been tough at times, but also–more importantly–beyond amazing; this extended life of mine. A privilege I did not think I would have.

A privilege I do not take for granted.

Some crazy combination of luck, formidable oncologists, and medical research that has managed to stay one step ahead of my disease have kept me here.

That, and an incredible lust for life coupled with a natural tendency toward tenacity.

I am grateful. Fucking grateful.

But still hungry. Ready for more.

Bring it 🙂

Hackathon!

So this is exciting. In the spirit of trying new (and sometimes groundbreaking) things, there is going to be a Linnea Olson Hackathon.

What’s this, you ask? Well, a novel approach to coming up with treatment options. Suggested to me by my friend Bryce Olson, engineered by my (new) friend Brad Power and CancerHacker Lab, it will involve a release of all my data, an attempt to refine what we already know (blood biopsies) and a major crowdsourcing effort.

Invitations are going out but anyone is welcome—I would love to have some patients onboard. There is a launch tomorrow (4/9) in the form of a zoom meeting at noon EST. If you would like to join, indicate so here or shoot me a message and I shall send you the link (we are doing it this way for logistical purposes; I apologize for making you jump through a hoop). If you can’t make it tomorrow but still want to be involved, follow the link and sign up—this is not a one off.

And if you simply want to watch, that’s fine too. I shall be posting developments here and hopefully we all will learn something new.

To science—outside of the box!

They just keep coming.

For months now, every few weeks, they arrive. A gorgeous bouquet of flowers. Attached, a simple note. This time; ‘Love to Linnea.’

I have queried the usual suspects and although several have responded by saying they would like to take credit, they cannot.

It is a mystery, a wonder, a simple glory. An act that has brought me great joy.

Thank you.

O.K.

I am…ok. In fact, as perfectly alright as one can be. Under the circumstances.

Last week–on Monday–I saw Jessica. She told me to enjoy this time. And I am.

What I no longer have: pustular acne, split fingertips, blisters on my retinas. Unrelenting fatigue. Alopecia. Intermittent nausea.

What I do have: hair. Eyebrows, eyelashes, and freakishly straight, platinum blonde locks. I will take them.

I am in the in between. Lorlatinib shall not serve as more than an intermittent treatment. At this point, it feels like an old friend. Imperfect, but reassuringly familiar.

Before too very long, I shall need to go down some other path. But, in the meantime, I am feeling hella like myself.

This weekend Kumo and I headed north, to my friend Annie’s home. We had a frickin blast. Cooking, traipsing, drinking, getting high. Looking at the stars. Talking about art. And life. Toasting Easter with champagne drunk from the headless carcass of a chocolate bunny. Living. Large. And light.

Before too long I shall be returning to business. The business of staying alive. But in the meantime, I am–with all due respect–simply alive.

Lovingly.

Proud of this

It has been almost two years since I began working for Medidata as a paid consultant. It is a task that I find stimulating, gratifying and rewarding. Work that I am proud of.

Alicia Staley, a cancer survivor herself, created the Patient Design Team in 2019 and brought me on board.

Unlike so many panels I have been asked to sit on, or visits to pharmaceutical companies, this is not a one off. We are a cohesive team that has slowly grown and which will eventually have fifteen patient advocates. Alicia and T. J. Sharpe–who was originally a member of the team but is now a Medidata employee–have created a fun but also incredibly meaningful experience for our group. We feel respected–seen and heard–but even better, truly regarded as experts on the patient experience. Medidata, ‘the global leader in creating end-to-end solutions to support the entire clinical development process‘ is providing us with the opportunity to help design their product. It is an innovative approach that was recently recognized by industry, as Alicia and her initiative took a first prize in the 2021 Scope Participant Engagement awards.

You can see the (short!) winning video here with footage from our last in person meeting. Please take a gander. And Alicia, please take a bow. You rock.

Like a whisper

“I came to live out loud.” Emile Zola.

And so I did. But over the past week or so I have been living quietly. Grieving, as yet another friend passed. A person too bright, too young, too loved. And yet, too soon gone.

Healing. I have a lot of healing to do. Physically and emotionally. A respite, if you will, before the next trial.

My latest scans were essentially stable. Not according to the radiologist, who saw progression. My oncologists always review the scans themselves, and Jess felt they were unchanged. I’ll go with her assessment.

As far as next course of action, I will likely enroll in the Lorlatinib/SHP2 inhibitor trial.

My big concern is that like binmetinib, a MEK inhibitor, SHP2 inhibition has the potential for retinal side effects. So that is an if for me.

However, by the time I would start, there should be several others enrolled and therefore additional data per potential adverse events.

In two weeks, I will check in with my team. In a month, scan again. And then, maybe, rock and roll.

In the meantime, this space traveler is enjoying the hell out of not feeling like shit.

Ok but not

I will be ok.

But not today. Today I am taking a break from everything’s fine. Because I truly am not. Not ok with split fingertips, pustular acne, bowels that are hopelessly confused by the addition of iron.

Nausea, which has me running for a bowl at least once a week. Mouth sores. Blisters on my eyeballs, which admittedly I didn’t even know were there until my retinal exam on Thursday and yet are serious enough that I’m out of another treatment option.

That. Another dead end.

But really, did I want to continue with all these troublesome side effects? In my heart of hearts, I did not. But I also preferred the idea of me being the one to initiate the break up.

However, I am looking forward to smooth skin, hands that don’t hurt, my tongue and gums not riddled with sores. And eyes that keep on seeing–that one is very important.

I received my second COVID vaccine several hours ago–something I am so very grateful for. As I developed a low grade fever after the first one I imagine I’ll be laying low tomorrow.

And then on Monday, a trip to Boston and some interesting discussion as to what happens next.

The wild blue yonder

So it’s official. Another one (therapy) bites the dust.

I spoke to Jessica Lin this morning and I shall not be going back on binimetinib. Hopefully the ocular toxicity I have experienced is reversible. I’m thinking it is. However, were the retinopathy to progress–as it likely would should I continue on any dose of binimetinib–my vision could be compromised. And that’s not acceptable.

Dr. Lin and Dr. Shaw are already in conference per my case. It bites to have an effective therapy waylaid because of side effects. But it happens.

Uncertainty. Once again, embraced. Because right now it is the only thing to hold on to.