Partee….

Of one. Things are getting a bit solitary around here. I broke up with both Blue Apron and Match.com this week. Had I not missed the deadline, OKCupid would have bitten the dust as well…

Yeah. This extrovert is transitioning to introvert. Just in time for winter.

Not such a bad thing, really. There is something inherently solid about going it alone. And I am, well, ready.

After a stint in the studio this afternoon, I took Kumo to the beach. Little boy was in heaven–literally running circles around me. And, when we got back home, I shared my rotisserie chicken. Pretty sure it was one of his best days ever.

I also cracked a bottle of white wine that I’d ordered from Italy last year. Made the executive decision to drink that whole bloody bottle. Good to the last drop.

Because this was a party, I ate FOUR snickers bars. Alright. I am taking some liberties here. They were miniatures. And yet…it was an indulgence.

I then watched the conclusion of season one of Away on Netflix. Satisfied my astronaut fixation. Without any hyperbole, I really do relate to those who go where no one else has gone. My trips are not to Mars (although I would go in a heartbeat) but rather to a decidedly less scenic but ever so important destination, tomorrow. And unlike an actual astronaut, I have the satisfaction of knowing that so very many others will eventually share my journey. That like me, they will see tomorrow. And the next day.

Not so glamorous (No NASA photo ops or swag) but hey, it still means the world. Right here, beneath our feet. Terra firma.

xo

Between the lines

Radiology reports have been seemingly impacted by the pandemic. Whereas they were once released as soon as I had a post scan consult, it now takes a week or more for them to pop up on Patient Gateway.

What my oncologists infer from my scans carries more weight, but nonetheless I like to read the reports.

Today the use of language struck me. Although this was describing my physical self, some of the same vocabulary is pertinent in an emotional sense.

From the troubling–degenerative changes and post traumatic deformity–to the potentially political: slightly shifted to the left. And then what is a negative when describing cancer–persistent–a positive in another context.

The conclusion is comforting however you view it: essentially stable.

And it’s accurate, as well. Neither great nor awful. Hanging out. Hanging in. Holding on.

Full spectrum

I am tough. Fucking tough. But also tender. And, at times, exquisitely so.

Perhaps this represents a healthy balance. But, of course, it is not quite so simple.

Once upon a time I told my mother Evalynn that just because she would do anything for me, it didn’t me she could do anything to me. It is not, I explained, like mixing hot and cold water in order to get warm.

Evalynn had no idea what I was talking about.

And me? Well, my life continues to be one of extremes. All or nothing, sometimes literally.

It’s not boring but damn, what I wouldn’t give for a bit of monotony. Humdrum. Status quo.

In medical parlance, unremarkable is as good as it gets. ‘Not particularly interesting or surprising’ according to the Oxford Dictionary.

Predictable. Tedious. Dull.

Yeah. Give me one of those. And if that means not shaken, but stirred, well, ok. I’m down with that.

To mendacity.

xo

A time of tender mercies

I have never been one to look away. Knowledge is power, right?

When I get up in the morning I make coffee, check my email and then go straight for the news.

For the first time in well, ever, I sometimes feel as if I just don’t want to know.

Global warming, the world on fire, COVID-19, rampant racism and divisiveness. We’re not coming together, we are falling apart.

It’s weird, as my own world has been imperfect for so very long now. You might think I’d be inured. As it turns out, misery does not always like company.

There is no comfort in worldwide suffering. None. Dystopia was once in the realm of imagination, a plot line to be enjoyed from the comfort of ones couch.

Sure, part of what made it all so compelling was the whiff of danger–the possibility that cataclysmic events might actually lie in the future.

But most of us thought that would be later rather than sooner.

That was before the year 2020, when the shit hit the fan all at once.

Our collective challenge is adapting on the fly. Trying to maintain a semblance of normality while also understanding that some things are never going to be the same.

The optimist in me says we can do this. The realist understands that it is not going to be easy.

Sigh of relief

I had a zoom meeting with Dr. Jessica Lin and Dr. Alice Shaw today to go over my scans. And…despite the fact that I am feeling more symptomatic, everything looks relatively unchanged from the previous scan six weeks ago.

However, Alice assured me, I know my own body and she takes my assessment seriously. Bottom line, this likely represents slow progression—too subtle for scans that are spaced six weeks apart.

The plan is to wait two weeks for another infusion of DS1062-a. Ideally I would have at least one more infusion after that, but once again after four or five weeks rather than three in the interest of side effect management.

Then we would reassess. Of course, I always want to know what my future options are. I am happy to report that there are two, a virtual wealth. First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, (G1202R, S1206F and G1269A) Alice feels my cancer is still primarily driven by ALK–the secondary mutations representing an effort to get around ALK inhibition. Hopefully a combo will cover enough bases.

I would characterize this as good news. I already knew my cancer was progressing but I am reassured that the progression is slow. And I like the sound of two options vs one. Better yet, should I have to begin with the MEK inhibitor/lorlatinib, it will not preclude my enrollment in the SHP2 trial.

So there you go. Business as usual. I still have cancer. But I also have options.

xo

Inside out

Yesterday was like no other. I picked my friend Marc up at 10 am and we headed to Andover where we had a date with an old piano.

Built in 1907, it was beyond repair and its owners–friends of Marc–had invited him to salvage what he could for art materials. Marc knows I love taking things apart and so I got to ride shotgun.

In two hours, five of us got it down to the harp. We then loaded my car up with the dismembered pieces. Marc and I picked up some bagels on the way to his house (I had a french toast bagel–who knew?) but once there, we first toasted our endeavor with gin martinis.

As I departed, Marc gifted me with some brownies. Last night I had one just before retiring. And then I settled in for the show.

And a wild one it was. Something about being high facilitates memories for me. It is as if I am not merely recalling, but rather experiencing yet again. That fresh, that real.

It was a long time before I fell asleep, but along the way I had some sort of breakthrough. A traumatic memory from childhood and its relation to another equally unsettling event as an adult. Turns out the two events are corollary.

When I did finally sleep I was awakened because I had to pee. That, and the sound in my left lung. I am now experiencing not only a wheeze but also dyspnea. I know where this is heading and can’t say I like it.

Tomorrow I have scans, with a virtual consult on Wednesday with Dr. Lin and possibly Dr. Shaw.

Today I carted the parts of the piano (post mortem) to my studio. I also painted for several hours. My heartfelt response to what is going on in my body is that I don’t have time for this shit.

It’s a bloody shame that cancer has such an issue with boundaries. My big plans matter squat to those errant cells. Therefore, I simply have to operate under the assumption that once this therapy fails, there will be other options.

It takes a lot of faith but also fury. Some strange amalgam of acceptance but also hell no.

I cannot, will not go. Not yet.

So.

Lungs are having a moment.

Yup. One fundamentally underappreciated organ. Not as romantic or picturesque as a heart. Not as hungry as as a stomach. Not as smart as a brain.

Lungs are one of those things we absolutely take for granted. Just breathe, y’all.

Except, it’s not that simple. Knee on the neck, stupid COVID, fucking fires.

Those boggy pieces of flesh are actually absolutely essential to our ongoing existence. You can go without food for 30-40 days. Water, three to four. Brain dead, well, with other life supports, for years. Heartbeat, 20 minutes. Breath? Three to six minutes before you suffer irreversible brain damage.

Our lungs are, unquestionably, one of our most essential organs. Arguably unattractive (I’ve held a resected lung in a lab) but oh so beautiful as far as function.

I would like to posit that 2020 is the year of the lung. Police brutality, a global pandemic, and the West Coast up in smoke.

We should not, cannot, ignore the organ that is in charge of respiration. Those of us with lung cancer understand this. Not just understand, our very existence is often predicated upon drawing a breath.

Of all our organs, it is our lungs that interface with and are most sensitive to our immediate environment. Therefore, logically, we should love our lungs.

And yet, even though lung cancer takes more lives than any other cancer annually, it is also the most underfunded when it comes to medical research.

Why? Is it the outdated stigma that only associates lung cancer with smoking? There is no question that smoking damages lung tissue, an established risk factor for lung cancer. However, it is the inflammation secondary to inhalation of smoke that is key. IE: damage to lung tissue. Viruses that attack the lungs (COVID) and wildfires can cause the same sort of damage.

Our lungs are the canary in the coal mine. And they should never, ever, be taken for granted. Just as our heart can’t stop beating, our lungs can’t stop breathing. And they are not discriminate. Whatever particulate is in our immediate environment will be inhaled.

Essentially, anyone who breathes is at risk for lung cancer. That is each and everyone of us.

2020 should be the year that we all stop taking the next breath as a given.

Love your lungs. Your very life depends upon it.

Remembering

I have found that with teachers and doctors it is the best and the worst who made the greatest impression.

Mrs. Van Winkle, who taught the third grade. She would play records of bird calls in the lunch room. I adored her.

And then Mrs. Moyer, in the fifth grade. She had been a model, was beautiful, and we all–boys and girls–had a crush on her. That is until the day I got caught chewing gum. Mrs. Moyer kept an empty coffee can at the front of the class room, and it was filled with already chewed gum. Her punishment was that you were to place your own gum in the can and to pull out a used piece to place in your mouth as punishment. I was a germ freak and absolutely horrified and my face showed it. I think she was afraid I might vomit so she gave me a bye. But my crush was over.

And then there was the physician at the Mayo Clinic whose name now escapes me. I’d been suffering from ongoing GI issues of unknown etiology. When he entered the room he asked how tall I was. When I said 5′ 10″ he said ‘You sit small.’ As he examined me, he posed another question. ‘If you could do anything in the world, what would it be?’ My immediate response was surfing. Which I quickly countered with ‘No, I’m certain I would be too afraid.’ This doctor looked me square in the eyes and he said, do you know what your problem is? You’ve lost your balls.’ He was right and I’ll never forget it.

By the time I met Dr. Frederick Rimmile I was forty. Two years prior I had delivered my third child. Always athletic, I suddenly found myself feeling poorly. Shortness of breath, upper body weakness, eventually a cough. In 2001 he ordered a chest x-ray. Years later, when I asked his practice for copies of my medical records, I saw that he had written this: ‘On the off chance that this young, nonsmoking woman has a lung neoplasm.’ Unfortunately he did not share those concerns with me.

Nineteen years ago Dr. Rimmile was on his way to a conference in California, a passenger on United Airlines Flight 175, the second plane to hit the World Trade Center.

Frederick Rimmile was a really good doctor. Only thirty two, he had enthusiasm as well as the ability to think outside of the box. I felt he took my concerns seriously. Honestly, had he not died, I am certain my lung cancer would have been diagnosed at a much earlier stage.

But he did die on that terrible day and I inherited a different doctor in his practice. Older, more complacent. She attributed my complaints to adult onset asthma. It would take another three and a half years and a recalcitrant pneumonia to set the record straight. Lung cancer.

I think of Fred often, but particularly on the anniversary of nine eleven. And I imagine a different outcome. For him, all the others who perished, and–frankly– for myself.

Stepping up

Ninety-four. That’s the number of steps I walk up to get to the fifth floor of the mill where my studio is located. And when I leave, ninety-four down.

There is a freight elevator in the building which would be substantially easier. But that’s the point. It is the fact that it is difficult (I have to stop to catch my breath several times) that compels me to take the stairs.

Of course, it is my goal to not have to stop at all. That may be later rather than sooner, but hey.

In the meantime, when I get to the fifth floor, I am kicking ass. Painting, y’all.

It’s a well kept secret but my primary avocation is artist. I still recall being escorted to the principal’s office in the first grade. I wasn’t in trouble (yet, that would be the third grade) but rather there to show off my artwork. I still recall my crayon drawing—a colonial style house (like my friend Ann Sturton’s) with a sun in the right hand corner and a yellow wooden duck with a pull string on the front lawn.

I was also adept at etch-a-sketch, one of my prized possessions. My Grandpa Roy had been the engineer of a locomotive, so trains were my favorite subject matter. My Grandma Effie floated the idea of having me show off my skills at the local A & P. Nothing came of it but her confidence in my ability is something I shall always remember.

Once I got to college I majored in art. Initially I pursued graphic design but after a semester abroad in France (and my first exposure to some amazing paintings), I switched majors.

It was not a practical decision, but rather one from the heart. However, life has had it’s way with me and therefore I have only painted in fits and starts.

Five days ago I got my brushes out again and since then, it’s all I want to do. The astounding thing is, I am a better artist now than I was the last time I practiced my craft. After some consideration, I can only attribute this to confidence. Painting takes a lot of faith. You have to believe your eyes and trust your hand.

I am on a tear and my only trepidation is in regards to that thief, cancer. It is pretty clear to me that I am experiencing progression again. This is a motivator but also, understandably, a concern. I simply can’t stop now. Therefore, another exercise in faith. I have to believe that there is yet another therapy in the wings.

Any other possibility is unacceptable.

Sensationalist

I am a sensationalist. Not in the traditional sense of the word, but rather as one who loves sensations.

Hot on the heels of a post entitled On Being A Weirdo I shall allow that as a child, I would lie on a raft tethered to the bottom of the pond in our back yard, waiting for the sunfish to school. Once a sufficient number of fish had gathered, I would jump smack into the middle of them, because I loved that feeling of having them shoot up my body.

And substances. The very thing that most people wish to avoid, I crave. When I was a teen, my stepbrother enlisted in the army and went through basic training. He later shared that the guys in his regiment would get drunk and then hang one foot out of bed so that it touched the floor in order to stop the spinning.

I love that feeling–spinning–as if someone has ahold of my ankles and is twirling me through space. Hardly a deterrent to over-imbibing. And anesthesia–man, I love going under.

For garden variety thrills I roll all the windows down and crank the air conditioner in my car–the combo of hot/cold/wind.

It all makes me wonder if some of us are just hard-wired this way. Without a doubt I am also an adrenalin freak—speed (going fast, not the drug) has enormous appeal.

I suppose this love of sensation informs me as an artist. And it has taught me much about control and the lack thereof. If one wants to get to that place of raw feeling, they have to be willing to let go. This is useful in certain endeavors like skiing. And sex. If you want an over the top orgasm, you’ve got to cede control.

This feels foreign, but really, there is nothing more natural. Our brains are capable of so much more when left to their own devices. And sometimes we need a little nudge to disinhibit. Alcohol, weed, and for the hardcore experience, hallucinogens.

It’s called tripping for a reason. And although it may sound terrifying to those who’ve not experienced it, it is not. Our brain is a remarkable and underutilized organ. It is hungry for stimulus.

So there you go. A little bit more about me and my personal experience with recreational drugs. When it came time to make a decision as to whether or not to enroll in a first in human trial, this was a decided advantage. I am not risk averse. Quite the opposite, actually.

You never know what is going to come in handy. 🙂

xo