Where have all the rabbits gone

There were some major highlights to today. A quick meet-up with Patty Watkins (and a photo-op with the white ribbon she brought me). Hugs from not one but both of my oncologists. Lunch with one of them (Alice) and coffee afterward with Brad Power, who is hosting the Linnea Olson hackathon. Brad and I had not met outside of zoom, and we were each surprised by how tall the other was (we’re all small online).

Less festive was the stark reality of where I’m at. In short, it’s getting increasingly less likely that any rabbits will be pulled out of hats.

On a plus side, that biospy is an enthusiastic go, as there is plenty of tumor to harvest now. By the end of next week or, at the latest, early the following week, I shall be back on the table.

I also signed a new protocol today, for the lorlatinib/TNO155 trial. TNO155 is a SHP2 inhibitor and paired with lorlatinib there may be a synergistic/anti tumor effect. It is very early in a phase I trial (I shall be the second participant at MGH). And, occular toxicity is a potential side effect. Given the blisters on my retinas while on binimetinib and lorlatinib, I could have been precluded but permission was given as long an eye exam pre-trial shows no abnormalities. And, of course, I shall be followed closely by a retinal specialist once enrolled.

So. There is that. An option. Today was a day for straight talk so I asked the what ifs. If I progress or experience side effects that would disqualify me from the trial, what else is there? Dr. Lin said we would peruse a portfolio of phase one trials at that point (clearing house). And, there are two potential fourth generation ALK inhibitors in the pipeline, but I may not fit the requirements for the first one or the timeline for the second (early 2022).

And then I moved the conversation to worst/best case scenario. If I don’t respond, six, seven months? She was slightly more optimistic, feeling I could make it through the holidays. And best case? Well, I’m not likely to reach seventy. Maybe not even sixty-five–and this is based on the irreversible damage in my lungs. However, if I have an opportunity to try and respond to multiple treatments, she felt a few more years were reasonable.

Just yesterday I was thinking about what it was like to simply assume that you would live another twenty years. And also about how long it had been since I had assumed/presumed anything of that sort.

That said, I have always felt that I had the potential to reverse what was happening to my body. Against the odds, but possible.

I no longer believe that to be true. This is based on my recent scans, but also how I am feeling. Exhausted. Often short of breath. And for the first time, in pain. Alice said this is either pleural effusion or tumor pressing on the adjacent nerves. Yesterday I had a five hour zoom meeting and I was out of tylenol. This girl poured some bourbon in her coffee cup. I shared this with Jess today and her only comment was at to whether or not it helped. And it did.

So, that’s the naked skinny. In all its unclothed veracity.

The ugly reality. That’s my most recent scan on the left—ten weeks ago on the right. My left lobe is disappearing.

Thursday

Tomorrow is the day. Hopefully I shall come home apprised. And then, apprise you in turn.

But in the meantime, let’s do a partial parse of that radiology report.

First off, it’s waaay too long. Big, bushy, unwieldy. Loaded with details that I both want to know, and don’t. As in, this might be interesting if it was not my body they were talking about.

And then there is the dictionary inducing terminology. We’ll start with sentence one: There is biapical pleural scarring with increase in the adjacent pleural fluid at the left lung apex. I was googling furiously, starting with word three: biapical. It means two apexes, the next word I googled. Let’s start there. Apex is an anatomical feature denoting the place where the upper lobe begins. So correct me if I’m wrong, but biapical would seem to imply two lungs.

About that scarring. Another word for it is pulmonary fibrosis. The scary thing about it is both the associated lack of function (breathing) and the fact that it is considered irreversible. Concerning. To say the least.

Next up–parenchymal. This is defined as ‘relating to or affecting the functional tissue of an organ.’ And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function.

Anteriorly and inferiorly‘–front and back, top and bottom.

Subpleaural nodule: exactly what it sounds like. A nodule, below the pleural lining (‘a thin membrane that lines the surface of your lungs and the inside of your chest wall.’). Intralobular septal thickening: (to be distinguished from interlobular septal thickening): ‘a form of interstitial thickening.’

Still with me?

Lymphangitic spread of tumor: (I’ve got this one)–cancer that has spread to your lymph nodes.

Loculated left pleural fluid: associated with conditions that cause intense inflammation, like empyema (heaven forbid, that one–it involves pus, despite the fact that it sounds like something you might order in a Mexican Restaurant).

Reticular opacity: ‘belonging to a broad subgroup of pulmonary opacification caused by a decrease in the gas to soft tissue ratio.’

Subpleural bands: more opacity. Alectasis: complete or partial collapse of lung. Loculation: ‘the compartmentalization of a fluid-filled capacity into small spaces (locules) by fibrous septa: ‘anatomical or pathological sheet-like structures that subdivide a component of normal anatomy or a lesion.’

So there you go. Now you can read my radiology report with bravado.

Now let’s hope we can find a way to address this laundry list of pathology.

And here we go

I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period.

So damn.

I am not surprised. My body and I have a rather tacit understanding. And what I have been hearing has been progression.

On Thursday I shall meet with both Jessica Lin and Alice Shaw. We shall go over the scans but also discuss the possibility of a biopsy–something I am requesting. The hackathon has been going strong and several offers have come in for further genetic testing and maybe even an attempt at creating a mouse model–if tissue is available.

As my tumor burden has increased somewhat significantly, I would say the answer is probably yes. However there is still the question of location, location–is it accessible.

Thursday can’t come fast enough as I shall feel more comfortable with some answers as to what direction we will be heading. The one thing I can say with assurance is onward. This party’s not over.

CT Chest – Details

TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST

COMPARISON: Prior exams, most recently a chest CT from 3/5/2021.

FINDINGS:

Lines/tubes: None.

Lungs and Airways: There is biapical pleural scarring with increase in the adjacent pleural fluid at the left lung apex. Again demonstrated are postoperative changes status post left lower lobectomy. Within the inferior aspect of the left upper lobe there is parenchymal consolidation which has increased from prior. Inferiorly and anteriorly, consolidation measures approximately 8.2 x 5.1 cm on image 364 series 4, increased from 4.2 x 5.1 cm as measured in the same fashion on chest CT from 3/5/2021. This consolidation extends anteriorly and inferiorly with increase in the subpleural nodularity which now measures 41 mm in length as on image 303 of series 4, previously approximately 37 mm with increase in the adjacent consolidation and groundglass opacity. There is increasing consolidation which extends inferiorly as well, now measuring approximately 5.9 x 4.9 cm in image 4 4 of series 4, increased from 2.9 x 2.0 cm as measured at the same level on prior exam. There is intralobular septal thickening as in image 360 of series 4 which lymphangitic spread of tumor cannot be excluded. There is increase in the adjacent loculated left pleural fluid. A right upper lobe pulmonary nodule measures 6 mm on image 251 of series 4, not significantly changed when compared back to at least 1/5/2021. There is adjacent reticular opacity consistent with scarring. Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021. No new or enlarging right-sided nodules are seen. There is reticular opacity in the right lower lobe with associated subpleural bands, stable from prior and likely due to atelectasis/scarring. The central airways remain patent.

Pleura: There is a small left pleural effusion with loculation which has increased at the left lung apex. Left basilar loculated pleural fluid has also mildly increased when compared to 3/5/2021. There is no right pleural effusion. There is no pneumothorax.

IMPRESSION: 

1. Status post left lower lobectomy with continued increase in consolidation within the inferior left upper lobe when compared to 3/5/2021 highly suspicious for progression of known malignancy. There is adjacent interlobular septal thickening for which lymphangitic spread of tumor cannot be excluded.

2. Mild increase in volume of loculated left pleural fluid superiorly and inferiorly when compared to 3/5/2021.

3. No significant change in scattered right pulmonary nodules measuring up to 6 mm. No new or enlarging right-sided nodules are seen.

I’ve been on mute

I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys.

The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on.

First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon. In the meantime I have been learning more about this beast inside me, thanks to full genomic profiling by Foundation Medicine and Lucence. Both companies generously donated their services, as part of the group effort to come up with some therapeutic options for me. Thus far nothing actionable, but rather some intriguing details that may have a bearing on choices made.

I’m learning a lot, and am overwhelmed by both the interest and generosity of engaged parties–both individuals and entire companies. But it has also kicked me into thoughtful mode. Not a bad thing. Just a quiet thing 😉

Just in case anyone thinks

…for even a minute that I’m not having a great time. That’s me, yukking it up with my friend Bill Burke. Photo by my pal Annie Steuernagel. Three inoculated artists on a Sunday. Looking at photos before moving on to oysters. Ain’t life getting grander.

xo

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.