Tag Archives: stage IV lung cancer

Chronic & cranky about it

When I was diagnosed with lung cancer in April of 2005, cure was the pie in the sky word. And man, I was going for it.

Those hopes were dashed five months later, at my first scan post lobectomy and chemo.

In the years since I would accept that I had run out of options only to discover I was ALK+ in 2008. Four phase I clinical trials and several returns to chemo and I am still kicking.

Sorta. Some days it is more of a limp.

The vernacular surrounding cancer outcomes has undergone some changes as well. We are all still in love with the concept of cure (rightly so) but the current aspiration in lung cancer is to make it into a chronic condition.

And I have some strong opinions regarding that. Yes, in a pernicious disease such as lung cancer, cure is generally not an option. But is the notion of chronic (‘long-lasting and difficult to eradicate’) truly acceptable?

From a quality of life perspective, certainly not. Physically, financially, emotionally, I operate at a deficit. Last week this wretched disease took three of my long time friends.

I excel at getting by. However, at our last (virtual) appointment, my trauma therapist suggested that I might want to raise the bar. And damn, if I knew how I would.

It’s tough. Single, low income, aging (the goal, but comes with attendant challenges). Far too much time feeling subpar. And sad. This shit simply does not get easier.

So yes, I shall do my best to be inspirational. But I also want to underscore that we need to do better. Much, much better. Raise that bar. And chronic doesn’t cut it.

The psych you out psychology of continuous chemo

Also known as a mind fuck.

The first time I had chemo was a little over fifteen years ago. Cisplatin and taxoetere. Four rounds, each more brutal than the the previous one. After number four, I was coughing up blood that looked like coffee grounds.

However, knowing that there were four and only four infusions provided me with a goal. Yeah, it sucked but I could reference an endpoint.

Later, I would go on a maintenance dose of pemetrexed and carboplatin and at the end of last year, I revisited that doublet with lorlatinib added into the mix.

On February 11 of 2020 I had my first dose of DS-1062a–a trophoblast cell-surface antigen 2 (TROP2)-targeting antibody drug conjugate. Quite the mouthful, but essentially, another version of chemo. And it’s been kicking my ass ever since.

More sublimely nasty than cisplatin and taxotere, but for my money, more difficult to tolerate than pemetrexed and carboplatin. At least with that combo I would feel pretty damn good again by week three.

This drug has been hard. Fatigue, mucositis, and eyes that always water. The hair on my head is scant and I’ve got no eyelashes whatsoever and only the faintest semblance of eyebrows. Last week I went to the dentist for the first time since the pandemic started and learned that I have a cavity under my crown and three more teeth that they are watching–I can add dental caries to my side effect list.

I feel suboptimal and, to my ongoing displeasure, look sick as well. As open as I am about my cancer I have very much enjoyed passing for healthy. And, for the moment, those days are gone.

Yesterday I had a scan, an echo this morning, and infusion on Thursday. Along with scan review I want to have discussion per risk benefit analysis with my oncologist(s) per ongoing infusions. Of course, if I have any significant progression, my hand may be forced. But if not, a decision must be made.

Do I continue a difficult treatment that has afforded a modicum of benefit? In my world should I even pose that question?

Well, yes. I am not obligated to undergo treatment. Which is not the same as saying I am giving up. Rather that the idea of a break sounds mighty appealing right now. After all, I have spent most of the past fifteen and one half years in treatment. And although I am mighty grateful that I have had continuing options, it is a lifestyle that does not always feel sustainable.

I’ll get back to you after my consult on Thursday.

xo

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.

Thanks for the screenshot Kirk!

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

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

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

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.