Monthly Archives: February 2019


Alright, I’m on a roll. Critical, negative, a bit whiny. Generally not the way to get elected class president.

It’s a trait I’ve had since childhood. I am not complacent and I do not hesitate to speak up when I feel that a situation is unjust. A nice way of saying I am often the first to complain.

That’s why I identify as an activist, rather than an advocate (too squishy for me). And I have no interest in being a poster child—for lung cancer, or anything else. It’s absolutely important to me to keep it real, and as time has gone on, my courage in this arena has only grown.

Some years back I was given the stage at the annual LUNGevity HOPE Summit in DC. Foolishly, I tried to give it a go minus a script. My presentation went off the rails quickly, with me proclaiming to the crowd that I would ‘never be anybody’s bitch.’

As I left the platform I was thinking I’d never be invited back. I certainly offended some people (because, of course, that’s not all I said that day) but overall, the response was receptive. And my transition from grateful advocate (thank you thank you thank you) to crusading activist (gratitude with a dollop of angry on top) had begun.

For better or worse, I am nobody’s bitch. At least in spirit. In reality, I am under the thumb of quite a few entities. Trial sponsor, landlord, taxman. It is what it is and I am what I am. A squeaky wheel, square pegged, outspoken mutant. Generally easy to like. Definitely hard to kill. And certainly impossible to silence.


Just another way in which I am between a rock and a hard place. I need pharma. Obviously, they have also needed me. Or, at least, someone else with a similar genetic profile and the balls to join first in human trials.

My relationship with pharmaceutical companies has been mutually beneficial. I am alive. And all three drugs which I have been in trial for have gone on to receive FDA approval. Time, energy and money well spent, all the way around.

However, as I’ve said before, (Don’t call me partner) this little romance between pharma and myself has not been one of parity.

Nope. One of us has gotten fabulously wealthy while the other–that would be me–has struggled mightily. Those new tires? They did in fact max out my credit card, a fact I discovered halfway through doing my laundry when my card was declined.

I am still–unbelievably–paying for my own parking each time I fulfill my end of the trial bargain. Ten years and counting.

The NYT’s would like you to know that we all bear the burden of high drug prices. Hear, hear I say. However it is the participants in clinical trials who bear the greatest burden. Yes, it has been our poor fortune to come down with diseases for which conventional therapies are no longer adequate, making us reliant upon experimental therapies. However, not only do we take on exceptional risk when we enter first in human trials, we also assume greater financial burden. We are paying for the privilege of being a guinea pig. Something only a truly desperate person would do.

I am a big fan of medical research. But I also believe that the primary motivation should be to address human suffering. However, as pharmaceutical companies are a for-profit industry, that motivation is always going to be muddied. Because at the end of the day, it’s not just drugs but money that’s being made here. And that, my friends, is fucked up.

Yes to this

Imagine a health care system based on these principles:

Services are funded through progressive taxation, so access is based on need, not ability to pay, and financial contributions are based on wealth, not health.

That’s the German model, as reported in the NYT’s today.

Although I have felt blessed to reside in a country where I’ve had access to cutting edge medical research, it has also meant that I max out my deductibles in the first two months of every calendar year. The end result is that more than one third of my income has gone to healthcare. Incredibly stressful and not a tenable situation. In short, there has to be a better way.

For a more in depth look at the German model, follow this link: The German Healthcare System

Oh boy oh boy

One wet but clean dog.

The last time I got a flat I was nineteen and a bouncer from an adjacent bar changed my tire.

In the years hence I’ve just hoped it wouldn’t happen again. Not a very good action plan. And yesterday, those chickens came home to roost. However, given the fact that my mechanic told me more than a year ago that I needed new tires, I am extremely fortunate that when one finally blew, I wasn’t on the freeway. In fact, I had just driven out of the parking lot of the lofts.

So I eased my car back into the lot. Called my mechanic and ordered a set of new tires, edging that credit card a tad closer to max. Texted Brian, who responded that he’d be around later and could help. Went back out to the parking lot to see if I could figure this shit out on my own but didn’t have to, as I ran into my neighbor Jeff. Got a little lesson in tire changing which came to an abrupt halt when the tire wouldn’t budge.

I went back indoors and called AAA and opened up a membership. Learned that if I needed a road assist that day it would be an additional $45 charge, but if I waited until midnight, it would be covered by my nascent membership.

I call AAA first thing this morning and a nice man in a white van and a fluorescent green smock showed up shortly thereafter. He pried the frozen tire off; saying ‘sometimes it just takes a power tool and a big hammer.’ Which could be some sort of motto for life.

Kumo, who had forgone his morning walk, took a ride with me to the mechanic. And then we traipsed 2.5 miles home, through the snow and slush, walking in the road most of the time as very few sidewalks in Lowell get shoveled. By the time we got here, my formerly white dog was rather gray and I popped him in the tub for a quick bath.

My across the hall neighbor had hung a bag with two brownies in it on my doorknob. I hungrily ate the brownies, made some coffee, and arranged a raincheck on the date I was to have tonight later. All this and it wasn’t even noon yet.

Ballin’ on a budget 😉

Where I am and where I’m not

Lunch at Slanted Door in San Francisco

I have been an advocate for lung cancer for a decade now, beginning with a story which appeared on ABC World News with Charles Gibson on June 2, 2009. Weeks later I began my blog and that fall I became one of the original peer reviewers for the CDMRP.

Ten years ago a blog about lung cancer was an unusual thing and lung cancer advocates were few and far between. Thankfully neither of these things is now true.

As I continued and broadened my advocacy efforts I have had the privilege of coming to know and care about so many extraordinary individuals. And I have watched with amazement as they have poured their passion and individual skillsets into advocacy in ways that were often beyond my own scope.

The past few weeks have been a time of soul searching. I am, without a next treatment available, once again between a rock and a hard place. It is what it is. However, this circumstance has meant that I must reassess my priorities. And what I have realized is this: I need to focus on living.

What does that mean? I shall continue writing my blog, my most consistent form of advocacy/activism all along. And I shall selectively participate in additional opportunities. However, I am on the short end of a long stick with much yet to do. As long as I am able, I want to write, paint, travel, love. Take it all in. Swallow life whole.

So there you have it. Two weeks ago I travelled to San Francisco for my friend Kate’s sixtieth birthday bash. Nos amis Melinda and Sally were there as well and we partied for three straight days. A fabulous time. And then I headed south to Palo Alto for some time with Wendy and Cristina, who I met, gee, a little over a quarter century ago when we all worked at the Redwood City Library. They generously paid for my flight and showed me a good time as well. So much fun. So much love.

And then this week my friend Lynn gifted me with a trip to Miami. I fell fast and hard for that city–lying by the pool with the sun on my face and a warm breeze blowing–a little slice of heaven. And Lynn was both a gracious host and a fabulous tour guide; we saw a little bit of everything.

So that, my friends, is where I’m at. In, out, about, around. Living it. Loving it.

Just another Sunday in Paradise

There is a place on the bridge of my nose that will not heal. Last night I noticed that it corresponded perfectly with the rim of a wine glass so I’m calling it a wine scab. Occupational hazard, if you will.

Prior to our walk this morning I dabbed it with some Neosporin and unwrapped a bandaid to put across my nose, reflecting that in some other neighborhoods this would be a signifier that my plastic surgeon had just touched me up. I laughed when I saw that the bandaid was emblazoned with Mickey Mouse–these puppies must have been on clearance–but I adhered it to my nose anyway.

Cold, cold morning so puffy jackets for both me and my dog. His purple, mine gray. Giant white sunglasses which almost hid the bandaid and black hoody over silvery watch cap.

The sun was out and by the time we got to the park I was both singing and whistling ‘Good Morning Starshine.‘ Badly but boldly and punctuated now and again by a cough. Soon Kumo assumed a pooping position and just as he got started the church bells bells began to chime. I looked around and thought how perfect it all is.

My sanctuary. My Sunday.

It’s so very good to be alive.


While waking

I share my blogs on Facebook as well and that is generally where I get the most comments. Per my previous blog and the dream about the woodpecker, my friend (and fellow lung cancer patient) Dora Medina-Flagg had this to say: ‘Interesting dreams- especially about the woodpecker. It gave me chills, because as part of my Native American healing, I was given a woodpecker feather and told to hold it near known tumors and focus on the Creator removing my cancer in the same way a woodpecker gets rid of rotting wood while looking for bugs.’

Well, Dora’s comment gave me chills as well. I decided a bit back that I would begin practicing my own form of immunotherapy through visualization. I mean, why wait for Western medicine to come up with a way to ‘harness my immune system’? It’s mine, right? My mind, my body, my cancer, my immune system? Who better than me to initiate healing?

Of course, I’ve been talking to this body of mine all along. However, I’m not sure I could see the trees for the forest.

Cancer has the advantage for a multitude of reasons. And certainly foremost is its ability to spread on a microscopic level. Not only is it difficult to detect, you can never be sure if you’ve gotten all those little malignant cells out of there.

Previously my visualization was rather vague and it occurred to me that maybe I wasn’t paying enough attention to detail. Thinking of the whole tumor instead of those individual cancer cells.

Well, now I’m weeding the garden. Going after every little invasive seed and sprout. And it works like this:

I visualize a single cancer cell (this is going to be an ongoing project). And then I choose my mode of destruction.

Sometimes I pop them between my teeth, like a tapioca pearl. Scoop them out (hey, Woodpecker) like punky wood. Squash, smash, pry, burn. Stomp. Rip. Pinch, Pull. Pick. Tear, toss, turn inside out. Annihilate. One–at–a–time.

Think of it as a pseudo Buddhist (if also violent) form of practice. A meditation of sorts but with a let’s blow this place to pieces bent.

It might just work.

*News Flash! Dora just wrote me this: ‘Woodpeckers are significant to Native Americans because they signify purification of the object upon which they are feeding.’ 

Absolutely perfect. Cancer, be gone. I’m going to purify the shit out of you.


While sleeping

I just got back from a week in California, compliments of my friends Wendy and Cristina. More details and photos to follow. But first this.

On the fifth night I dreamt of a black and white woodpecker with wingtips burned to ash. The next morning I was having coffee with Wendy at the table when I looked out the window to where a bird was pulling suet from a feeder. It was a Hairy Woodpecker, just like the one in my dream.

On night six I had a dream that I was dancing. I felt like Shirley Temple in my full skirted dress; jumping and leaping and twirling about. Again and again people would stop to tell me what an amazing dancer I was.

In my waking state I am far from confident per my ability to dance; lack of coordination coupled with an inability to follow direction and a sense of rhythm that is best described as uniquely mine. I dance alone or in the company of alcohol or some other source of disinhibition.

To be able to dance like that in my dreams is almost as good as flying. Perhaps my wings have been singed (after all, I have been flying rather close to the sun) but who’s to say they are not yet airworthy.

Dream on.


Row, row, row the boat

I am adrift. Not emotionally, not metaphorically–really, truly at sea.

First, my housing situation; non tenable in all respects and something that has weighed heavily upon my mind for weeks now. There will be a solution but at the moment, it is not obvious.

And then, more importantly, my health.

Lungs and Airways: The patient is status post left lower lobectomy. There is essentially stable ground glass opacity in the left upper lobe on image 64, measures 3.7 cm, measured 3.64 cm in November 2018 . There is essentially stable more confluent consolidative opacity in the LEFT lower lung, along the diaphragm, best seen on image 96. Multiple other ground glass and solid nodular opacities are essentially stable, for example in the RIGHT upper lobe on image 46, 51, LEFT lung on images 51, and 89.

As reassuring as my last scan was, the fact remains that I have multiple areas of cancer in both lungs. And, at long last, some information from the biopsy on 12/14/18.

Essentially, in addition to G1202R, I have now acquired two more secondary mutations, both of which are conferring resistance by compromising the ability of lorlatinib to bind. G1269A and S1206—I am not certain of the letter following 6 on the second mutation but it is no longer Y. More importantly, neither of these newly acquired mutations is actionable. As in, there is no next therapy.

Adrift without a paddle, as it were. Or maybe a more apt metaphor is that I am in possession of one paddle yet, but it is busted. And that would be lorlatinib.

I am still expressing ALK, so Alice is hopeful that lorlatinib continues to confer partial resistance. As she put it, the cancer is working very hard to get around it. My job, in a nutshell, is to hold on (stay alive) until a 4th generation ALK inhibitor is developed.

Big sigh. This is the time to think possible not probable. And also to not only get that good china out, but to use it at every damn meal.