Or how to be up when you’re down. A palindrome of a concept, if you will. Sort of like the joke Jem and Aug made up when they were wee: ‘Why did nothing cross the road? Because nothing wanted to.’
If you follow. The yes and the no and the can and the can’t all at once.
The living while dying, which we all must do but some of us faster than others. The slippery slope.
It is easier to stay on the upside when one is feeling well. And safe. And cared for. Currently I am struggling with all three. Oh to have a fire to light, a bathtub to crawl into, a partner to bring me a cup of tea.
These are flights of fantasy, and hardly top shelf. When I can muster the energy, instead I imagine lying on a deck chair somewhere. Warm breeze in my hair, cold drink in my hand.
And yet I remain the master of ‘it could be worse.’ Last week my therapist countered with ‘but yes, it could also be better.’
It will be. It must be. And I am the one who will make it so.
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.
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.
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.
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.
I don’t think like other people do. I know this because those other people have told me so.
As a child, I certainly did not consider this a virtue. Shy, socially awkward, and not at all self assured, I was only too cognizant of my square pegged-ness.
The remarkable thing is, I grew into myself. Just like my outsized feet–which provided a hint of the height I would eventually attain–I am now more than comfortable in my own skin.
In fact, I like being me. A lot.
I believe this is because I own it–this me-ness. Or, as I said to my daughter yesterday, ‘Love the one you’re with. Yourself.’
There is no question that I am still weird, if quietly so. But I am also extraordinarily self confident, which I define as understanding both one’s strengths but also weaknesses.
I am also really good at passing–I fly that freak flag low. And one of my super powers is I really don’t give a fuck as to whether or not someone likes me.
Now if I were antisocial, that might be an issue. However, as I love people, most of them love me back. The perfect antidote to no fucks given. But I also don’t waste time trying to figure out how to fit into someone else’s agenda. This is both freeing but also means that I come across as genuine–not a bad thing.
This life of mine is imperfect and in the best of times, a bit of a mess. However, like some well worn and beloved sweater, it just feels right. Holes and all.
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.
Cancer crashed my party more than fourteen years ago. The guest from hell. Uncouth, unkempt, possessed of a nasty disposition and with no respect for boundaries. Lousy fucking company.
And then there was the matter of an underlying agenda: this guest intended to kill me. To say the ensuing relationship has been uncomfortable is an understatement. And all attempts to evict the interloper have ultimately proved unsuccessful.
Yep. Chances are cancer and I are in this for the long run. At times I think the only remaining question is which one of us is going to burn the house down first.
Now, with no shiny new weapon to pull from the arsenal, I have had a lot of time to reminisce about previous treatment modalities. Cutting, chemicals and more chemicals. In the process I have lost hair, teeth, toenails. My skin has erupted, my esophagus bled. Sometimes I have not recognized who I had become, inside or outside.
Throughout it all I have viewed myself as a warrior, my body the battleground. Fighting, always fighting.
A few months ago I decided that perhaps it was time to try another approach. I would listen to my body, talk to my cancer. “I go, you go,” I said in a reasonable tone. “But it doesn’t have to be this way.”
I’d like to tell you that my cancer perked right up, slapped itself on the forehead and told me it didn’t know what it had been thinking. Apologized for the selfishness, the nihilism, all that stress it had put us through. That now that it had seen the light, it was going to just pack up and go home. Mea Culpa.
But of course that’s not what happened. And I also discovered that my own sense of antipathy overwhelmed any sort of pseudo empathy I might be trying to pull off.
When all was said and done I realized that there was only one thing left to do. I would decide, yes decide, to simply ice cancer. Just like that. “Cancer, you’re dead to me.”
You know what? It’s working. My stress level immediately plummeted. Already familiar with the fact that not giving a fuck can be a super power (really truly) it simply hadn’t occurred to me to stop caring about cancer.
I had scans last week, a review two days ago. And even though the historical precedent has been that once progression starts, it just keeps going, I felt calm, cool and collected. I already knew. My cancer is stable. STABLE, Y’ALL.
We’ll discuss this further. But in the meantime, think about it. Pretty much everyone with cancer is stressed out all the time. 24/7. Can’t be a good thing.
What I’m doing now—deciding not to care—isn’t just some simple party trick. It takes determination and a strong, strong will. But the positive feedback was instantaneous once I figured out how to let go of the stress. Give it a go. Even if for just a few minutes or an hour or two. And then see if you can do it longer.
I am not cancer free but then again, I am cancer free insomuch as I am anxiety free. And I will wager that is bad for the cancer and good for me.
My daughter Jemesii was an amazingly precocious child. Highly verbal and given to preternatural wisdom. One day, at the ripe old age of maybe two, she said something that I shall never forget: ‘Dreams are where your thoughts go at night.’
Well yes, of course. Seemingly a simple observation but oh so much more.
Dreams are one of the reasons I love to sleep. When I am dreaming it is as if I have opened the door from one place to another. A magical place, strange and yet so familiar. From one self (waking) to another (sleeping).
Over the past two nights I’ve had a pair of dreams that seemed particularly powerful. In the first I am watching four elk graze when they turn and start moving toward me. Then I see the tiger. And then the tiger sees me. I begin to run and the only shelter is a screened in porch. I get there just before the tiger and quickly latch the door. To my surprise and great relief, the tiger simply regards me through the flimsy wood frame and wire mesh and then turns to go. I think to myself that sometimes a simple barrier is enough to protect oneself from danger. But there is more. Because this barrier is transparent, I can still see the tiger. Now he is far below and menacing a group of people gathered on the beach. They do the oddest thing (or perhaps it is the only thing to do, although I think I would have jumped into the water). They simply turn their backs to the tiger and of course this does nothing to stop him from attacking.
In the second dream I am standing in a series of lines, waiting to get into a cafeteria. At one point a number of us sit together on a wall and I share the fact that the previous night I had been very stoned while looking at the night sky. And that I had been able to hear the throb and hum of the universe. This is met with silence but an Indian man, who is also some sort of teacher, approaches me later and says ‘Absolutely. It is all moving, all the time, and that is what you heard. I too have felt it.’ The subtle (or not so subtle) wind of existence. Life. Energy. It. Us. Connected.
Where my thoughts go during the day: a captured moment.
Two years ago I was going through a tough patch, as I had recently separated from my husband and my health and financial situation were both a bit grim.
I spent a fair amount of time on the phone talking to my mother Evalynn and I’m awfully glad I did, as she passed away unexpectedly that June. During what would be one of our last conversations, my mother asked me what I did for fun. ‘Everything’ I said. ‘Everything I do is for fun’.
And I really meant it.
Approximately 2975 days have passed since I was told that I had three to five months left to live. Each and every one of these days has been a glorious bonus; an unexpected gift; an amazing treasure.
Recently I heard about someone who had ‘made the best’ of a similar situation where they’d received an extended reprieve from death. This individual was traveling the globe. Sounds like fun.
However, bucket lists are not an option for me–out of reach financially but also not what I really desire so much as to go on with life.
And so I have. Living each day as if it weren’t my last. Yet doing so with utmost awareness of how unexpected but also special each and every moment is.
I choose to love life unconditionally and so without judgement. It’s all good. And 99% of it–also fun. Simple stuff like waking up in the morning. Having that first cup of coffee. And then the second. Texting my kids. Hanging out with friends. Going to a thrift store. Smiling at a baby. Striking up a conversation with a stranger. Taking long walks.
But also paying bills, sitting in a waiting room, getting blood drawn. Doing laundry, languishing in traffic, buying groceries. Watering the garden, scrubbing the tub, unloading the dishwasher. All fun fun fun. Because each and every one of these tasks is a privilege I never thought I’d have.
Sometimes it is incredibly poignant and I am reminded of certain moments from childhood: playing outside as dusk approached but knowing that a grownup would soon call us all indoors. The slight anxiety and anticipation would lend a tingling excitement and new intensity to our games. Perhaps we ran a little faster; shouted with a little more bravado, became a bit bolder than before.
That which is fading is often held all the more dear. And I am hanging onto dear life with all the joy I can muster.
life and breath: outliving lung cancer 