Glancing back but also forward. Scrappiness intact.

I got an email from the co-founder of STAT this morning to announce that they are celebrating their fifth birthday. I didn’t read it but then my friend John Novack got in touch to inform me that I made a brief appearance in their birthday video.

Five years ago, I was featured in a story by Bob Tedeschi on the front page of their inaugural edition. Cool beans. No way could I have predicted that I’d still be here half a decade later.

Funnier yet, just last week I sent an email to STAT—in which I stated that I felt they needed someone to present the patient perspective. And that I knew just the patient who could do that (me).

Well, I’m not on board. Yet. But if the editors of STAT want to get in touch with me, they’ve got my email address.

In the meantime, enjoy this video. And if you don’t blink, you will catch a brief glimpse of moi resplendent in sequins.

xo

Aw fuck

So my last post was heavy on the optimism. Over the top, really, adding forty years to my lifespan.

I love it when I can pull that off.

Today, not so much.

Truth is, we are facing the probability of another year of social isolation. Sucks under any circumstances but more so if A. you’re already dealing with some heavy shit like a terminal illness and B. you live alone.

Yeah, if it weren’t for my art practice, I’d be lost right now. I spent four hours at the studio today. And as the light waned (my sign to close up shop) I just thought, ‘wouldn’t it be cool if I was just an artist instead of an artist with cancer.’

Damn I hate that C word. So much so that on the drive home I imagined simply excising the third letter in the alphabet. I mean, there are a lot of crappy (case in point) C words. Can’t, cunt, corpse. Don’t get me started…

A frozen enchilada and half a martini later my mood is not much better.

I know I’ll rally; because that is what I do. And there are no good alternatives. I have cancer, we are in a pandemic, and I live alone. These are facts. No amount of pretending is going to change any one of them.

So there you have it. Fuck the funk. Embrace the suck. And just keep moving.

xo

Mindset

Yesterday I wrote about living to 100. A bit of a whimsy and yet not.

You know that feeling when something gets cancelled and suddenly it’s as if you have a surplus of time?

Three years into lorlatinib and sustained stability I entertained the notion that perhaps I’d been cured. And it was lovely. I grew up in Colorado–a landscape of wide vistas. The idea that I might actually live opened up a similarly endless space inside my head.

Unfortunately that fantasy was dashed and I am back to a much more compressed vision of the future.

This morning I was still thinking about 100, and what a luxury it would be to simply assume I’d be around for a long time. I know people whose grandmother lived to 106, their mother to 97. Longevity runs in their family, like a generous inheritance. And a foregone conclusion.

And yet, of course, the shit could hit their fan too. There are no guarantees. However, on a cellular level, it has got to be a good thing to operate under the assumption that you’ve got a whole bunch of time left.

I used to set my clock five minutes ahead, just to trick myself into not being late. And it worked. I mean, I knew it was a set up and yet it got me out the door earlier.

So what if I stopped planning my life in three to six month increments? Lived not as is this was my last day on earth, but rather the first of many?

I’m gonna give this a go. The worst that could happen is something I was already planning on. But you know? Sometimes plans change 🙂

xo

Dream on

I had a funny thought this afternoon. It went like this: ‘Forty more years. If I could live until 100, I think I might have enough time to realize my potential.’

It bites to be such a late bloomer when one has a terminal illness.

In reality, I am just hitting my stride. Sure, my physical self is declining in a way that has nothing to do with cancer (advancing age–who knew?). And there is no doubt that between lung cancer and treatment my body has been beat to shit. Once upon a time my oncologist told me that platinum chemo ages one on a cellular level by fifteen years. And in my case, that would be times three.

Then again, culturally I am far more a millennial than a boomer. All over the map, I am.

But back to those forty years. It would be so fucking cool to imagine that it was a possibility. The odds are not with me on this one. However, there is nothing to stop me from dreaming. I mean, my dad lived to 83 and my mom to 79 and they both had cancer. Of course, they weren’t diagnosed at the age of 45, as I was.

However, even though old age is a statistical improbability, I think I’m going to just take my time here. Continue hanging out and hanging on. Aim for 65, and then 70. Wrinkles and saggy triceps? Bring it. I’m going for the long haul.

xo

I had a dream

This ongoing pandemic and the dumpster fire that is 2020 have really stirred the pot for me emotionally. For the first time in my life, I feel ‘triggered’ on a fairly regular basis. Interesting that, but also an indicator that I had some serious undone shit to deal with.

After years of regular appointments with the same therapist, I decided to mix things up a bit and I started seeing a counselor who specializes in trauma.

That’s a difficult thing to own, that one has been traumatized. But there it is. A childhood rife with abuse and two marriages that, each in their own way, continued the pattern. And, not to be discounted, life with a terminal illness. The common thread–me.

EMDR is the modality being employed. My initial response was skepticism. And then, almost magically, it clicked. I had one of those aha moments very similar to when you find the missing piece of the puzzle that is key.

I now look forward to these sessions, simply because I know that as difficult as they can be they are helping me to get stronger. Like the 94 steps up to my studio.

Every couple of months I check in with the psychiatrist who referred me. We had a zoom meeting this morning and I assured her that all was going well. I specifically referenced the fact that my depression had lifted to the degree that I was no longer sleeping during the day; a go-to form of escape.

Hilariously (to me, at least) as soon as our meeting concluded, I was overcome with a desire to take a nap. Hoodie up, heating pad plugged in, I snuggled in for a cozy snooze. My dreams took me back to my childhood home, in a way that was both intriguing and comforting. And this was no brief rest–I dozed for a solid three and 1/2 hours.

I awakened feeling refreshed in the way that only a kick-ass nap can do.

Moral of the story, sometimes a girl just has to sleep it off. And tomorrow, I’ll be climbing those stairs.

xo

The can and the can’t

Living with a terminal illness is a lifestyle. Certainly not by choice, without a doubt an imposition, but also not a passing phase.

If you want to survive, you have to adapt.

And I have. Uncertainty, discomfort, so fucking much wasted time (waiting rooms–so aptly named), a negative balance in my bank account. I got it.

However, there is one thing I simply cannot get accustomed to. The dying.

Not my own mortality, which I have made a certain peace with. Nope. The fact that I lose so many I care deeply about.

There is no getting comfortable with the constant cycle of loving and losing. Yesterday I learned that someone I feel an intense connection with has entered home hospice. And I am on edge, bracing for the inevitable.

It never gets easier. This, above all else, is the reason I have adapted the war metaphors. Fifteen plus years into this journey I have lost hundreds of friends to lung cancer. It is almost unfathomable. However, in the context of battle, there is the small solace of a common enemy. And I, as someone still standing, must continue to fight.

Not just for my own survival, but in honor of all those who have been taken.

I know how dearly each of them wanted to stay, and what an incredibly random thing continuing survival is. Never a foregone conclusion. Struggle is the only given.

It would be oh so lovely if there was another way. However, in love and war, one must always be alert. That, and grateful for the small mercies.

And I am. Ever vigilant. But also always thankful.

xo

Self less

As in, less of me.

I’m afraid that the isolation of single life in a pandemic has not been particularly conducive to self care. One pays better attention to healthy living when in the company of others. I’m not sure if this has to do with being accountable or if solo-ness is an ongoing version of free-fall.

Yup. Bad habits. Like the dust bunnies under the couch they have been accumulating. Eating shit, not drinking enough of what is good for me (water), drinking too much of what is not (alcohol). Forgoing exercise. Embracing chaos.

Chances are my situation is far from unique. But I’d also hazard a guess that those of us who live alone are far more likely to have gone to seed.

This morning I took a good long look in the mirror. At the bags under my eyes–which would disappear if I skipped my evening cocktail(s), at the extra weight around my middle–attributable to both those cocktails and three bags of Halloween candies (for me, not trick or treaters). A tad bit ashamed, I had a quick little let’s get real chat with myself. It was time to stop overindulging and to get back in the habit of a healthier lifestyle.

I surprised myself by actually feeling encouraged: I could start right now. Yes. That very moment.

One hour and forty five minutes into my fresh mindset, and I am holding strong. Give me a week, and I’ll report on my progress.

And I’d be obliged if you would hold me to it.

xo

Blech

I have a high tolerance for ick-ness. Blame it on a steady diet of space food sticks and Mad Magazine in my youth.

But I do have limits and today I am pushing my luck.

I have been experiencing a low level crappy feeling for days now. My youngest, the designated worrier in our brood, advised a COVID test. However I felt pretty certain that was not the issue.

Today I figured out the source of my malaise, an infection secondary to the mucositis that is also secondary to treatment. I have started an antibiotic which will hopefully set it all to right.

In the meantime I am feeding fire with fire. IE: gross to the grossness.

Caramel corn, two hotdogs (healthied up with diced cucumbers), three glasses of wine and black licorice. Six crackers as a digestif.

Not proud. But sometimes resistance is futile.

Off to the dentist tomorrow morning (clean living) and then maybe I’ll be game for the 94 steps to my studio. And without a doubt I shall eschew all pork and popcorn products.

But grapes? They remain negotiable.

The three P’s.

I am a person first. Patient second. Participant third.

Person is my birthright. Inalienable. Not open to argument. Irrevocable until the moment I die.

For many years patient was a temporary or transitory state of being. As in, today I wore blue. Or, on Thursday I made mashed potatoes for dinner.

That all changed in April of 2005, when I first learned that I had lung cancer. From that moment forward I have been a patient.

Just as I shall be a person until I pass, so too shall I remain a patient. When I enrolled in my first clinical trial in October of 2008, I added the third P: participant.

Participant as a state of being comes and goes. However, with more than a decade spent in clinical trials, it too is almost a constant. Not a birthright, also not a given. A privilege. And a burden.

A participant is a different sort of nuance than person or patient. De-identified, if you will. Valued not as an individual, but rather as an aggregate. A data point.

However, you can be a person but not a patient or a participant. Or a person who is a patient but not a participant. But if you are a participant, you are still a person and in most cases, a patient as well.

These distinctions are not mere wordplay. When I make a statement to the effect that I am more than my tissue, I am a human being–this is what I am referencing.

Person first. Person always.

Out. And about.

It is a curious thing that my namesake, the Swedish Botanist Carolus Linnaeus, is the father of binomial nomenclature. Taxonomy.

I have little use for classification. Labels are uncomfortable, both figuratively and literally.

When pressed as to my art practice I am wont to say that I do not practice material specificity. Yes, it sounds pretentious but I am serious. Whatever material is at hand is the one I shall be employing in any given moment.

My attractions are manifold. A true (label alert) maximalist, I am delighted by oh so much.

Sexuality falls under this big umbrella as well. As a girl I wanted to be a boy, not because of any gender confusion, but rather because being a boy just seemed better. And talk about uncomfortable: those goddamn starchy dresses and patent leather mary janes we girls had to wear. Give me a pair of worn in jeans, a buster brown t-shirt and some keds any old day.

I was, in the parlance of the sixties, a tomboy. Capguns, skates, marbles, slingshots, erector sets, microscopes. And my bicycle, the ultimate expression of freedom.

In a way that felt entirely natural, when it came to crushes, I fell for boys and girls.

When I got to college a lot of my friends and roommates were lesbians. And yet I dated men. In some ways I still wanted to be a guy and I relished the opportunity to ski, climb, backpack and cycle as one of the ‘boys’. Sort of. I was entirely cognizant of the fact that my membership to this club hinged on a relationship. And when we broke up, that membership would be automatically revoked.

Married for, well, far too long, it wasn’t until I started dating again three years ago that I decided there was absolutely no reason to not see woman as well. What I was not prepared for was the pushback. And, to my surprise, it generally was not men who had an issue, but rather women. Lesbians.

As an atheist I was well acquainted with a marginal status. The other, if you will. But it had not occurred to me that there would be those who would say that bisexuality was either a fraud or not a thing at all.

That prompted me to broaden my definition. Pansexual. The closest I could get to all inclusive without eschewing label altogether.

It has been an interesting experience. Although I am taking a breather now, in the three years I spent online dating, I corresponded and or spoke to literally hundreds of people. I went on actual dates with probably forty. Of those maybe a quarter identified as female, including one woman who had surgically transitioned.

Although I remain relationship free, I developed some incredibly fine friendships, with people of all genders. And, just as atheism is gradually being more openly embraced, so is the concept of pan or bisexuality.

That label thing. I truly believe so much of human behavior is on a spectrum, and I feel fortunate to be somewhere smack dab in the middle. I love/am attracted to men but I also love/am attracted to women.

And if we want to talk brass tacks, it’s about the person more than the genitals. As I once said to someone on OKCupid, ‘I did not join this site to get laid. First of all, I’ve had lots and lots of sex. Secondly, I can (oh thank you nature) have sex with myself.’ Or, as one of my (narcissistic boyfriends referred to it), ‘making love with the person you love best.’

Self sufficient as I am (in all respects), I still have a little twinkle in my eye. Although not actively seeking, it would be pretty damn swell to fall in love again. And as I am (by the assessment of no less an expert on sexuality than my well versed daughter) gender fluid, the odds just might be in my favor.

xo