Monthly Archives: August 2020

Eight down

Difficult to believe that August is almost over. A friend of mine noted on twitter that the past eight months have felt both interminable and also fleeting. Perhaps it is the disconnect between what we previously considered reality and the space we now exist in–the year that just keeps on giving. And taking.

On Thursday I had my eighth dose of DS1062-a. Cycles seven and eight have been on schedule–three weeks apart. And because of that I am back to dealing with some side effects. My ninth dose will be pushed back by a week or two, which I am totally on board with.

Infusion kind of knocked me on my butt this time. Not day one, where thanks to the additional boost of steroids, I powered on through. I drove myself in at an insanely early hour (check in, 7 am) and didn’t get back home until almost twelve hours later. But I still managed to make myself dinner.

However yesterday morning I hit the wall. Couch surfing and then early to bed and late to rise. And I’m still wiped out.

I have never been adept at feeling poorly, as I have no affinity for inaction. Impatience is one of my prevailing qualities. By chance (or not?) my psychic energy is at an all time high right now (plans, big plans); kicking back is not on the roster.

Balance, pacing myself, making certain I don’t bonk are the takeaways in the days post infusion. That and a quiet gratitude that as strange as life now is, I’m here–experiencing it.

The bad, the ugly, but also the good.


Hitting that glass ceiling

I had to be in Boston bright and early yesterday morning for an echocardiogram. The technician noted that this was my 36th echo, and that she thought that was probably a record.

Honey, don’t get me started. I’m in the triple digits for chest CT scans. Forty some brain MRI’s and over sixty abdominal CT scans.

This is why I am once again noncompliant as I partake in my fourth first in human trial: after the first two CT’s, I have refused additional abdominal scans.

Trials are a necessary way of life for many of us with advanced cancer. But never forget that this is a codependent relationship; trials also require people like me. Emphasis on person.

I am, first and foremost, a human being. One who shall continue fighting not only for my life, but for my personal rights. And for yours as well.

Medical research cannot move forward without the consented participation of so called ‘volunteers’ such as myself. As I am in this for the long haul, I will not agree to onerous demands that put my already compromised health at greater risk.

I urge you to do the same. Question the necessity of tests that are not clinically indicated. Remind sponsors that you are more than your tissue. Stand up for yourself in a trial just as you would if you were a patient rather than a participant. Challenge the medical research establishment to make good on the aspirational ‘patients as partners.’

It is up to us to initiate change because we have the most at stake (literal skin in the game). We cannot afford to be complacent. And if you think about it, there is nothing to fear but cancer itself. Seriously. Question the unequal power dynamic and the status quo.

To do so does not indicate that you are anti research. In fact, I would posit that it means quite the opposite. You wish to be in this relationship but you also desire that it be healthy and productive for all involved. Demand respect. And always remember, assent is not your only option. It’s ok to say no, and better yet, to suggest an alternative.

Less passive participation is not only good for the individual, it will ultimately benefit research as a whole. So don’t hesitate to speak up. Speak out. Advocate for yourself but also for a truer alliance. An actual partnership.

Let’s move this needle forward together.

All for me

I think (and if I were speaking my cadence would get real slow right now…) one of the most difficult adjustments as part and parcel of this pandemic is me.

I am simply not accustomed to this much alone time. It’s ok, as in, I can do it. But sometimes it fucking sucks.

If I cook, or clean, there’s nobody who’s going to care but me. Same if I choose to not cook or clean.

On the one hand, that’s kinda nice; in a cut myself some slack sorta way. But then again, it gets old. Really fast.

I suppose that’s because I’m not out to entertain/impress/interact with myself. Nope. It’s the difference between masturbation and making love. Quite likely the same outcome. But…that which is shared is just so much better. More memorable, more meaningful, more multidimensional.

We humans are social animals. And this pandemic is messing with that big time.

Once again, I can do this. But damn–I look forward to the day when we can once again just fall into one another’s arms. It’s going to be a hug for the ages.


Virtual blues

Struggling a little with this one today. Truth is, virtual never really appealed to me.

Nope. Kinda all about keeping it real. And now I’m living in a time where that is simply not possible.

However, I also feel it’s imperative to get with the program if one wants to stay on track. And I do, I really do.

Therefore I’ve been trying to find a rhythm in this strange, new world. For me that looks like more sleep, too much alcohol (as much out of boredom as anything else) and a certain malaise of spirit. Those are the negatives. But, because I am determined to also make the best of this, I am getting to the studio almost every single fucking day. And I’m still walking up the five flights of stairs. In fact, I almost look forward to it–those stairs. They represent some sort of accomplishment of will. Evidence that even given my transgressions (sleep, alcohol, too much time on the internet) I am still committed to becoming stronger, better, more determined.

I am. But as 2020 has all the structure of a house dress, that isn’t easy.

Thank whomever one thanks if an atheist that I have a dog. Kumo keeps me on some sort of schedule. He will be walked three times a day, whether or not I feel like it.

And I am doing a damn fine job of feeding myself, credit to Blue Apron.

But it would feel so incredibly nice to hug someone. There is nothing virtual about touch.

Nothing. In the bigger picture this is a positive. I mean, how sad would it be if human contact could be replaced by something virtual.

So so sad. And therefore I shall wait. Until that moment when we can take off our masks and get real, really real, yet again.



Some months ago my oldest son August forwarded a text message he had received from one of his employees:

Its been awhile since I met some like you. Your work ethic is impeccable. Which means whoever raised who was a Beast. Embrace the suck…it’s what made you.’

I loved every word of it, and the way it captured both so much of who my son is as well as his experience.

My kids have not had an easy time, any of them. And yes, I was the ‘Beast’ who raised them although I told August that even though I don’t usually like to share credit, he should send the message to his stepfather as well.

August has embraced the suck, and now he’s prospering. His mama couldn’t be happier or prouder.

My own persistent suck is uncertainty, and I not only embrace, I hug the hell out of it; or rather if.

If. the two letter version of uncertain. Another incredibly impactful word.

My favorite definition is the second one, as I had to read it several times before it made sense.

If looms large in my life. I was discussing financial security with a friend yesterday and said to him ‘If I die, everything is going to be fine,’ and then we both laughed.

It does solve some problems–dying. But it is not the solution I am looking for. If is better–it has wiggle room and possibility.

Of course, if I want to stay, embracing the suck is not sufficient. I am also going to need to work my ass off.

And I’m ok with that.


Going to miss all of you

I am starting to find some rhythm in this new way of living. But dang, sometimes virtual just doesn’t cut it.

The annual LUNGevity International Lung Cancer Survivorship Conference (aka HOPE Summit) is this weekend. Sort of, as it will all be online.

The upside is that barriers to participation (travel and cost) have been removed. That’s a really good thing.

However, I am grieving the fact that we can’t all be together.

It’s a feeling like no other to be in the company of my lung cancer family. I get a charge (call it love) that sustains me for months. About six, actually. A biannual conference would suit me just fine.

But not this year.

I’m just going to have to imagine that big group hug. One to go, with love on the side.


Hope is whatever is next

I had an interview yesterday where I was asked about places I have travelled to and which was my favorite.

My response was that it was the last place I had visited, and that I took the same approach to my art. My most recent painting/artwork is my favorite.

There is something inherently practical about this approach and I feel it has to do with momentum. Although I am always pleased, I am never quite satisfied. And therefore, I continue to explore. To create. As the Talking Heads said (so wisely), Stay Hungry (And skip the ad. I love me some Joe, but I loathe advertisements).

So yeah. The best is yet to come. I fervently believe that.

I am fortunate that not only am I good friends with my oncologist Alice Shaw, but also her husband Stan. Our relationship is professional but we are also just simpatico. The Stan and Linnea show (my presentations through Harvard Medical School’s Executive Education Department) are just so much fun. There is no one I’d rather be on a dais with than Stan. He has this way of making each of our interactions feel as if it is the first time we’ve spoken. That fresh.

Anyway, I had something to share with Stan yesterday. And in my text to him I added this trivial fact: ‘Tell Alice I can’t die now as it’s just (my life) getting to the interesting part 🙂

And I really do believe that. The best is yet to come.

I just need to be there.

To keep showing up.


We are going to be OK

You know I love OK. It is a two syllable word that is unto itself. Nothing more, nothing less. Kind of the golden mean of language. Universally used and accepted.

As a fifteen year plus survivor of lung cancer, I can tell you that it is, again and again, more than enough.

Yes. Once upon a time I viewed life differently. BC (before cancer) and AD (after diagnosis). Please ignore any perceived blasphemy.

No harm, no foul. OK.

I now love life life unconditionally. That’s right. Whatever shit it hands me, as long as I’m still standing, we’re in a functional relationship.

Not gonna argue that this was a survival strategy. My fairy tale version of existence was a fail. But because I am dedicated to surviving, I made some adjustments. It’s all good.

Of course, I have faltered. Depression and mouth sores almost took me down. Well, that and a pandemic. But fucking A, I rallied.

And now I feel it’s important to reinforce what I truly believe. We humans are going to be ok.

Not necessarily the world we once knew. There is going to be pain. And loss. At times we are going to feel as if we can’t go on.

But then we will. Go on.





If you are a woman, there’s a very good chance that you, at one time or another, have been lying on a table in a paper johnny with legs akimbo and your feet in stirrups as a gynecologist gets ready to put their fingers in your poontang while also murmuring, ‘Just relax.’

Um, yeah, right.

Those with male genitalia cannot even begin to relate until the snap of the latex glove with that first prostate exam, generally around age 50.

But women, we get started young.

It is useful, in the sense that one becomes adept at separating body from mind. It is also ludicrous, but not exactly clear who the joke is on.

Kind of like now. A didn’t see this coming compendium of all of the above.

In addition to the ongoing pandemic, it’s been hot. Fucking hot. A concerned friend insisted on buying an air conditioner for me. Said appliance was delivered last Saturday and my friend Jim was going to help me install it.

However, the goddess who watches Kumo while I am being infused had been running a low grade fever. Out of a sense of responsibility she contacted me and also scheduled a COVID-19 test for Tuesday. I told Jim not to come.

I was supposed to go on a date that evening (social distancing observed) but out of my own utmost of caution, I cancelled. Don’t want to be spreading that shit around.

Well, my friend the goddess got tested and then found out yesterday that they had spilled her sample in transit. So she was retested. In the meantime, my clock is still running. It shall be interesting to see if the COVID results are returned before my self-imposed-extra-super-cautious two week quarantine ends.

In the meantime, it’s still bloody hot, though thankfully, not as hot as yesterday. And I do have an air conditioner. In a box 🙂

But me? I’m just chilling. You know, relaxing. When the world hands you a dumpster fire, toast marshmallows.

Drop in NSCLC mortality

So that’s a good thing, right?

Well of course it is. However, let’s discuss.

Statistics show that those of us with non small cell lung cancer are living longer. This is attributed in large part to targeted therapies.

I can’t argue with any of that. I expected to die more than a decade ago, but thanks to TKI’s, I’m still here. And fully fucking grateful at my good fortune.

But let’s not fool ourselves. Living longer is a consolation prize.

Yup. It is not even in the same ball park as assuming you will reach old age. Those of us surviving lung cancer are doing it day by day, month by month, and year by year.

Not only does it take courage, it requires an extraordinary amount of grace to be grateful for the short end of the stick. And from time to time I feel compelled to remind others of this fact.

What most can take for granted, those of us living with terminal illnesses hold dear. It’s the difference between being lost in the desert with a full canteen of water and one that is almost empty.

We cannot afford to be wasteful, and yet that impulse to take a big gulp is still there. So yes, grace and self control.

And the ability to savor. Every last drop.