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.
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.
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.
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.
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’ve got no eyelashes. Not a single one. And my eyebrows remind me of those scraggly hairs my adolescent sons would so proudly sport on their upper lip–which I referred to (and not kindly) as a pornstache.
I also noticed yesterday that the sides of my head are looking a little thread-bare. Like a newborn, my soft fuzz rubs off on my pillow when I’m sleeping.
So, it’s gotta go. I’ll be shaving my head after breakfast because when it comes to hair, I am all or nothing.
It is a tad disappointing–I was pretty jazzed about the new growth. However, with the last two cycles three weeks apart, I am experiencing the side effects of treatment yet again.
My first four days post infusion I was butt-kicked. Zero energy. The mouth sores are back as well, albeit a milder version than before.
Of greater note, I’ve noticed a familiar wheeze in my left lobe. Side effects plus efficacy is an acceptable trade-off. However, there is absolutely no point in going through this shit if my cancer’s not taking a similar beating.
I will be scanned on the 15th which shall confirm or deny my suppositions. Preemptively, I have alerted my oncologist and gone so far as to suggest that if there is not an obvious next step, a break might be in order.
When I look back over the past seven months, it as if I have been trying to get somewhere in a leaky canoe. In between paddling, I’ve been frantically bailing. The good news is, I’m still afloat. And should all else fail, well, I’ll jump overboard and swim to shore.
Every once in a while I google myself, just to see what’s out there. When I do so, popular searches appear at the bottom of my browser page and invariably one of them is Linnea Olson obituary.
Once upon a time it freaked me out, but no longer. In my community it is entirely valid. In fact, when Facebook alerts me that it is someone’s birthday, I go to their home page. I am checking to see if they are alive before wishing them a Happy Day.
BD (before diagnosis), I would read the obituaries faithfully. If someone was younger than me, my heart would catch. A premature passing felt both tragic and somewhat ominous.
Now, if someone has died and the cause is cancer–minus any reference as to what type–I presume it is lung. That is because lung cancer is still saddled with an assumption of culpability. We call that stigma.
As for my own mortality, I suppose you could describe me as comfortable. Not willing, and certainly in no hurry. However, as death has been my familiar for so very long now, there is inherent ease in our relationship.
In some fucked up way, this is advantageous. I do not worry about dying. It is life that keeps me awake at night.
Beautiful, impossible, difficult. Never, ever to be taken for granted.
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.