Deets

I am generally possessed of a mighty thick skin. Not a quality I was born with but rather one acquired through repeated injury. I don’t say this with any drama—it’s simply a fact. And I, being a scrappy survivor, have developed tools/personality traits to effectively protect myself.

However every once in a while something gets under my skin. When I logged onto Facebook this morning, another cancer survivor had characterized my cancer as ‘amazingly slow growing.’ I should have just let it go but I responded by saying that I wished my cancer did grow more slowly, before listing for her all the modalities of treatment that I have undergone since my diagnosis. And then I counseled her to be more sensitive when describing another’s cancer as amazingly slow growing.

For those who wonder what the fuss is all about, here is the synopsis from my most recent radiology report:

Surveillance for lung cancer status post left lower lobectomy. 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 subsolid nodules in the left lung are stable or slightly increased in size compared with the prior exam. 

Slightly increased small loculated left pleural effusion.

First of all, the possibility of lymphangitic carcinomatosis. Now you don’t want to let those horses out of the barn.

Secondly, just for scale, the largest of my masses is now 4.4 by 2.1 centimeters. No small potato when one is talking about cancer.

So yes, I am darn fortunate that I have been able to survive for as long as I have. But I haven’t exactly been sitting around and eating bonbons as I’ve fought (yes, fought) rather tirelessly to stay alive.

There. Got that off my chest. Now if I could just get this other shit out of my chest I could get back to that box of candy.

xo

Cusp

So physically I am slowing down a bit and I can’t say I like it. It is difficult to feel your body failing and the fact that this isn’t my first rodeo doesn’t make it any easier.

Alice has been great about checking in even though she’s got oh so much on her plate (goddess goddess goddess). She called last night and we both agreed that at my next appointment on November 14 we will revisit the idea of adding chemo to lorlatinib. Now I’m not crazy about another go with platinum therapies—I’ve previously been treated with both carboplatin and cisplatin and neither was a picnic. Nor did either of them ever knock down my cancer, but as Alice reminded me, I remained stable while receiving chemotherapy. And stable would be a boon until that clinical trial opens up. We would both like to keep me breathing—literally, but also in the greater sense. So we’ll see where I’m at in a couple more weeks.

In the meantime, I remain extraordinarily busy. I just spent two days in New York City at a Patient Design Studio with the life science technology company Medidata. My friend and fellow cancer advocate Alicia Staley is heading up their effort to become truly more patient centric when designing products. As I said at the conclusion of the workshop, it felt as if we were being invited not only to have a seat at the table, but to help prepare the meal. And better yet, this workshop was not designed to be a one off–this shall be an ongoing relationship. Progress, my friends.

While In NYC, I posted some photos on instagram and my niece Riian, who I’d not seen in years (we became related through my first marriage), and who lives in NY, reached out to me. We went to dinner on my last night, compliments of my sister in law, her mom (thanks Steph!). So much fun. And by coincidence one of my favorite researcher/scientists, Lars Engstrom, flew into NYC from California with his ten year old daughter Tova the day before I departed. So after dinner with Riian, Lars and Tova took me to the top of the Empire State building. Incredible!

This coming week I have my second practice for TEDX (I’m giving a TED talk! November 23 in Boston). I am super excited but also nervous. Lots of memorizing and in front of a live audience as well.

And then my vintage clothing business, House of Redemption, is rising from the ashes. It will be reopening in Mill No 5 in Lowell. I have taken on two partners, Sean and Marianna, (adopted them, really). This is not a money making venture so much as a responsible way to deal with my rather vast collection. And it should be a ton of fun as well. Pictures once we are up and running!

xo

What really keeps me going

Y’all. Really truly.

Now I get a big kick out of nature–simple things like the murmur of crows that passed over my car as I drove home this evening. That moon. That sun.

But people. I really love people.

Couldn’t even tell you if I am an extrovert or an introvert because I do like my alone time. But I feed off of interactions with other human beings.

I know people can do some really shitty things. But we are, for the most part, so incredibly fine. I believe this with all my heart. And I also believe that what you believe will manifest.

So therefore I have the good fortune of going through life loving my fellow kind. Although dogs are pretty damn good, people are my absolute favorite animal. Fascinating, confounding, complex. Never a dull moment.

Capable of love, perhaps the most magical trick of all.

Love. A quality which renders us vulnerable but also lends us the power of going beyond. Beyond hate, beyond separation, beyond illness, beyond death. Even more powerful than hope, love. Love lives on even when hope is lost. Love is immortal.

I am blessed with love. Lots and lots of love. Received and given.

Keep it coming.

And going.

xoxo

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