The goddess takes another gig

Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology. 

My first thought was that I was grateful she was staying in the Boston area. And then my heart sank anyway. However Alice quickly assured me that she would retain one half day of clinic and so could still see patients. I was also concerned as to the impact on the clinical trial I am waiting for (it is a trial she has designed), but evidently that will still be a go.

Obviously this is something of a loss on a personal level, but I nonetheless greeted the news with overall enthusiasm. Alice will remain a champion of ALK+ and ROS1+ cancers and will be directing her energy in the lab to developing more treatment options. I am relieved that she will remain a clinician but I also believe that by focusing on discovery, Alice will use her formidable talents to the benefit of many more people.

Change is difficult and I know this was not an easy decision for Alice. I’m excited for her and incredibly proud of all she has accomplished. I also believe her experience in the clinic will translate to a sense of urgency in the lab–she will remain a fierce advocate for patients.

My dream team is going to get a remodel. I will miss the old look. But I also want Alice to be in a position where she can do more faster–to the benefit of the greater good. Alice wants that as well, which is why she is making this career move. So really, there’s just one thing to say.

You go girl.

xo

 

Another dawn, another day

A story that bears repeating. Pun intended 🙂

I found this greeting card yesterday at the local Market Basket. It was meant as a birthday card (who knows why) but I shall co-opt it to my own purposes.

This is not the downedest I’ve been (made up word intentional as well). Nope. Almost seven years ago, post progression on my second ALK inhibitor, I was getting chemo yet again. And although I was married at that time, I truly felt alone. 

However, I’m pretty adept at turning inward for the things I need. And what I needed more than anything else was for someone to have my back. Literally and figuratively, as I desperately wanted to be held.

And so I turned to my imagination. Tried out some animals in my head (yeah, I’m a weirdo, I know). A wolf, a lion, and then a bear. Bear seemed just right. Kinda cute and cuddly looking but also potentially lethal. Just what I was looking for in a pal.

In my mind, bear was holding me. Big spoon, to be more explicit, those sharp claws resting gently on my forearm. ‘Bear,’ I said. ‘If you will just stay beside me while I’m going through this shit, I’ll make a deal with you. If I die, you can eat me. But if I don’t, you can’t.’ I could feel the bear’s breath on the back of my head. Bear didn’t budge.

Right there and then I decided bear would be my spirit animal. 

Now and again, I call bear back. Although as time has gone on, I’ve needed him/her less and less. When I’m feeling strong, it’s a lion I imagine. 

Having bear show up yesterday was a reminder that I’m not alone. Now there’s a chance that bear is hungry. But a deal is a deal and I’m not planning on being dinner.

The struggle is real

Just breathe.

If only it were so simple.

When I’m not coughing I’m wheezing. My left lung is getting boggier by the day.

It sucks, this downward spiral. Been here, done this, doing it yet again.

I mean, I’m tough but this is fucking demoralizing.

There, I’ve said it. Allowed that this shit gets me down. That not falling into despair as I hang on until the next clinical trial that may or may not work takes enormous will power. At times I feel like I’m running on sheer survival instinct. I want to live.

Just live.

Branching out

So. The goddess came through.

First we reviewed my scans and discussed the findings:

Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.

Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis. 

Additional sub solid nodules in the left lung are stable or slightly increased in size compared with the prior exam. 

Slightly increased small loculated left pleural effusion.

No surprises there and I am grateful that the word slightly predominates. It is clear where this trend is going but it would also seem that we have time to figure out what the best approach shall be.

First, I am to start nebulizing in an attempt to address my bronchorrhea–the source of the persistent crackle in my left lung. And should it get worse, there is the option of combining pemetrexed with lorlatinib–which would mean leaving the trial and getting lorlatinib by prescription. Avastin could be added to the mix for possibly greater efficacy. Alice is going to start the ball rolling in that direction so that I can apply for financial assistance to help pay for the deductible on lorlatinib–just in case. However pemetrexed kicked my butt energy wise when I was on it seven years ago, so this course will only be as needed.

Most exciting is the news that Alice is going to be opening her own trial at MGH in a couple of months–combining lorlatinib with a MEK inhibitor–binimetinib. She feels this is something that could be effective in my case, so it is my first choice.

Also encouraging is what has been going on behind the scenes in Alice’s lab. My last biopsy identified three secondary acquired mutations. One, G1202R, I had previously and lorlatinib is likely at least somewhat effective against that yet. The other two are newly acquired: S1206F and G1269A. S1206F is rare; Alice has not seen it in any of her other patients. However G1269A is becoming a more common mechanism of resistance to ALK inhibition, along with G1202R.

Alice then shared with me that they have been attempting to make models of all the possible combinations of my three mutations, so as to test drug against them.


I tell you what. This is not the Cadillac of health care, it is the Bugatti La Voiture Noire. It is incredibly humbling to understand the astounding degree of highly personalized effort being expended in the interest of saving my ass. So I damn well better show up.

Yes. That branch just got a little bit thicker–it might even be sprouting some new growth. Alice’s parting words to me were ‘If anyone can do this, you can Linnea.’ To which I responded, ‘If anyone can do this, we can, Alice.’

xo

Aspirational amnesia

I’ve been traveling a lot. So much so that when my alarm sounded this morning my first thought was ‘where am I?’.

Oh yeah.

Before dawn, warm bed and suddenly I felt a delicious sense of avoidance. What if I just decided not to drive into Boston. Didn’t look at that scan, didn’t read that report.

Cancer, what cancer?

This would be a great day to just sit one out. Close my eyes, count to ten. Forget about it. Really, just forget about it.

Emotional hooky.

But no. The dog needs to be walked, Alice will be waiting, the world will keep turning.

Climbing trees

I have no fear of heights and I love to scale things. Trees in my youth, some rock climbing in my twenties, scaffolding and the coupling of freight trains in my fifties.

Well, it would seem I’ve circled back to trees and this time I am way out on a limb.

I had my routine scans last Friday. Afterward I texted Alice to let her know I was certain they would show progression, based on my physical symptoms. My scan review was to be this Thursday with my nurse practitioner rather than Alice and I wanted to make certain the two of them talked options prior to my visit.

After Alice had a chance to review my scans personally, I received a text from the Goddess herself. ‘Just wanted to chat. Thanks.’ Alice has been my oncologist for more than eleven years now. I can read between the lines with relative ease and I knew that if my assertion was incorrect–that my scans had in fact showed stability–a reassuring text would have sufficed.

I had a dry run for my panel yesterday morning and Alice was tied up in meetings so it would be quite a few more hours until we had a window in which to speak. Back in the day this would have undone me but years of living with this situation have lent me a certain calmness.

Our conversation was brief but confirmed that my scans do indeed show progression. Likely more troubling to Alice are my cough and the accompanying wheeze from my left lung.

My Thursday scan review has been moved to Friday, and I will meet with Alice rather than my nurse practitioner. We will discuss possible options as well as timing. It all feels a bit like firing a gun with an empty chamber.

And yet I know Alice will come up with something–likely combining lorlatinib with some other therapy. I will keep my ship pointed toward the shore. Hope is not cheap but I have made more out of less.

xo

This girl’s busy

At WCLC
with the famous Janet Freeman-Daly

Getting home from Barcelona was a bit of an adventure as our flight was delayed and it looked as if I would miss the connection in Zurich. However there were three of us traveling to Boston and when we landed in Zurich, they had a van waiting on the tarmac. We were zipped off to two passport checks (everyone running) and then through a tunnel under the runway to our waiting plane. Very James Bond.

There was no time to indulge in jet lag as I had a commitment the day after my arrival home. An awards ceremony, Xconomy Boston 2019 . I had been nominated in the Patients First category and was one of three finalists. It was an honor to be nominated but I also felt I was way out of my league. However the prospect of sitting at a table for the evening with my oncologist Alice Shaw and her husband Stan (I work with Stan at HMS)–this was reason enough be in attendance.

Well surprise, surprise when they announced my name as a winner.

Alice Shaw, Linnea Olson, Stan Shaw

It was a fun, fun evening out with two of my favorite people. Two days later I was in Amesbury for the annual Live It Up! LUNGSTRONG, hosted by Diane Legg and her husband Dave. Held at their charming Victorian in Amesbury, the party looked as if it might be rained out but the cadre of volunteers–friends of the Leggs and their three sons–kept the food and good cheer coming.

Diane, who has been living with lung cancer for more than fifteen years now, founded LUNGSTRONG in 2011. This grassroots organization has now raised over $4,000,000 (yes, four MILLION dollars) for lung cancer research. Diane is not only a dear friend, she is one of my personal heroes.

Fatigue slowed me down a bit for the next few days, but I finally had a window in which to start pulling together my new living space. And then a guest appearance at a town hall meeting for Foundation Medicine on Thursday followed by reception at Harvard Medical School that evening and then a presentation to an international gathering of YPO the following afternoon.

At a time in our lives where so many of my friends are retiring, I often feel as if I am just starting my career. The good news is I love what I am doing.

This week I drove to NYC will my friend Bill Burke for the opening of his show with Lois Connor at Fordham University’s Idiko Butler Gallery (September 23–November 13 2019). Good times. The following morning I was to speak again at Harvard Medical School so I caught an early flight back. Friday I had scans and that evening I began training for a new volunteer position with C4RJ–Communities for Restorative Justice. I am passionate about criminal justice reform and it will be good to get out of the cancer wheelhouse just a bit.

I flew to Philadelphia this morning, and tomorrow I will be sitting on a panel at Fisher Scientific’s Allentown Innovation Summit–participating in a discussion on decentralized clinical trials. Back home on Wednesday and in Boston again on Friday for my scan review.

When first diagnosed with lung cancer, I made a decision that I’d just keep walking–because most people die in a bed. Motion creates an arc rather than a point in time.

No lying down on the job for me. My goal is to arc/flame out.