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.
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.
As universally difficult as 2020 has been, 2019 was no peach.
It was not something I shared for political reasons. Not those politics, the personal kind.
After six years of residing in a live/work space located in an artist’s community, my landlords decided not to renew my lease. Seems they didn’t like me much, or at least the fact that I was quite outspoken per various ongoing issues (imagine that). Initially I was told I had two months to vacate, but if you recall, I had a trip to Italy planned and it was simply not possible. Once I threatened legal action my lease was extended for two more months.
Moving meant not only my household items, but also my entire vintage clothing stock as well as art studio. And of course I was experiencing progression. Sucked, sucked, and sucked some more. But I got it done (with a little help from my friends).
The apartment I moved into was charming and located within a few blocks of a dear friend. It seemed perfect. However I had been there less than a month when I was awakened by a loud argument coming from the apartment above me. Unfortunately it was occupied by none other than my landlord. Awkward. The shouting went on for hours (‘You’re a fucking liar, No, you’re a fucking liar!’) and then something hit the floor. Alarmed, I texted her to see if I should call someone. And my heart sank.
Unfortunately the arguing continued off and on and I began to feel both trapped and unsafe. One night she hosted a drunken karoke party which I posted about on facebook. The next day a friend let me know that an apartment just across the street from her was for rent, and that I needed to go see it that evening.
I loved these landlords (a couple my age) and the location—my friend was literally two minutes away. So I decided that I would break my lease.
All hell broke out after that, as my landlady searched my social media and saw both the facebook post as well as a blog I had written about her Halloween decorations.
Sigh. To say it was ugly is an understatement and I hope I never, ever see her again.
I also learned, not once but twice, that having a terminal illness means diddly squat in certain situations.
In the end, just as I was starting chemo I moved yet again. Household, vintage clothing, studio. It was expensive and incredibly draining. I did not start 2020 in a good place–financially, emotionally, physically.
However, y’all know by now that I am nothing if not resilient.
I am still in the hole (in all respects) but I have made some solid progress.
My new home is safe (although my friend/across the street neighbor moved to Maine once the pandemic started), the vintage clothing business is hanging on by a thread (just don’t want to lose more money) and I have a new studio in an unrefurbished mill in Lawrence. It is grotty, cheap, and huge with the most amazing light. I love it.
It has taken me the past few months–what with the clinical trial et al–to get it completely set up. Today, for the first time in over a year, I painted. And I can’t even begin to explain what a joyful experience that was.
So 2019–bite me. 2020–bring it. You’d be surprised at what I can handle.
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.
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.
To those of you–including our commander in chief–who are in a rush to ‘liberate’ your state. Shame on you.
And the young woman with the ‘My body, my choice, Trump 2020’ poster? Darling, that’s not how it works in a pandemic. Simple equation–you choose not to take precautions (wear a mask, social distancing) and you might well come down with coronavirus. At which point you–and your precious body–become a vector, spreading that disease to others.
Chatter about the silver linings of COVID-19–don’t even. I mean, if you are ensconced with your loved ones in a gorgeous home with plenty of food, go ahead and think it. But don’t fucking say it aloud.
For far too many of us, there is no upside to this situation. Nope. It sucks and then sucks some more. If we are lucky, we (and our loved ones) will live through it. But in the meantime, our finances, our morale, our hope–have all taken a hell of a beating.
In four days I head back into Boston for yet another infusion. MGH, the epicenter of an epicenter when it comes to coronavirus. Risking my life while trying to save my life. Nothing fun, shiny, or redeeming about that.
Rather, it is frightening. Bloody hell hard. At times I wonder if it is worth it.
But then my survival instinct kicks back in. The odds have not been in my favor for fifteen years now. Unfavorable plus unfavorable equals less favorable. But familiar. Achingly familiar.
life and breath: outliving lung cancer 