Monthly Archives: October 2020

Chronic & cranky about it

Posted on October 31, 2020 | 4 comments

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.

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And the goddess concurs

Posted on October 30, 2020 | 6 comments

Alice called me today and we went over my scan report as well as my visit with Jessica Lin yesterday.

She is on board with a repeat scan in five weeks and then, almost certainly, a switch in treatment. Binimetinib plus lorlatinib is finishing up phase I so I would be entering at either phase IB or II. Most importantly, it will not preclude me from entrance into the SHP2 plus lorlatinib trial when that begins enrolling.

Her final assessment is that DS-1062a likely slowed down the pace of my cancer. However, given both the difficult side effects and the modest response, she agreed that it makes sense to give something else a go.

Not gonna lie, it’s always a bit scary moving from one treatment to another. And even though I am more than ready, progression is never a good thing.

Today I am totally wiped out but have also been wrapping my head around what is next. Back into the unknown. However, from this moment forward, I am focusing on recovering from yesterday’s infusion. Which is a postive.

Kumo is with his goddess, Susan. She spoiled him with long walks and a roasted turkey breast for dinner. I have been in my pajamas all day long–a rare but much appreciated luxury. My friend Diane came by briefly after her own scans the day before yesterday, and she dropped off a salmon filet which I finished this evening.

Thank the universe for good friends, stellar oncologists, and options.

xo

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Game plan

Posted on October 29, 2020 | 4 comments

My sense of where I am at and my scans are in agreement. And although I can continue to entertain the notion of free choice, Dr. Lin said today we were coming to that place where a switch in treatment is likely indicated.

First, the radiology report:

FINDINGS:

Lungs and Airways: There has been a prior LEFT lower lobectomy. Again noted are multiple peripheral nodules in the LEFT upper lobe the largest of which measures 1.5 x 1.3 cm on image 157 series, 4 unchanged from 9/15/2020, but increased from 8/3/2020 when it measured 1 cm. Other LEFT upper lobe nodules are stable in size and number. There is some persistent patchy enhancing 3 x 5.1 cm masslike opacification in the LEFT upper lobe image 245 series 4 that is also stable compared to the prior exam but slightly larger compared to 8/3/2020 when it measured 1.7 x 4.8 cm. While this may represent increased atelectasis, progression in consolidative tumor also possible.

There are multiple stable peripheral nodules in the RIGHT upper lobe and along the minor fissure. The nodule along the minor fissure measures 8 mm image 160 series 4. No right-sided new nodules are noted. No new nodules are noted. Airways are patent.

Pleura: There is a persistent loculated pleural effusion with increased loculation superiorly and posteriorly.

Of greatest concern is the (currently stable) spread to my right lung, the increased loculation of the pleural effusion, either greater consolidation of my largest (3 x 5.1 cm) mass or increased atelectasis, and the fact that one of the nodules in my upper left lobe has increased in size to 1.5 x1.3 cm from 1 cm when I was scanned on 8/3/20. Not rapid growth but also not slow.

The plan is to infuse DS-1062a one more time today. Scan in five weeks and revisit a decision then. The assumption is that I would start on a trial of binimetinib (a MEK inhibitor) and lorlatinib (ClinicalTrials.gov NCT04292119), but once the SHP2 plus lorlatinib trial becomes available, make a switch. Tell you what, I’m going to get a belt dedicated to trial participation, and start making notches on it.

So there you have it. No angst about throwing away a realistic option as my continuing progression concurs with my personal assessment. I asked about the side effect profiles of both binimetinib and SHP2 and am encouraged. First, they are oral medications (no more chemo!) and, as petty and paltry as this might sound, there is no hair loss. Goodbye buzz cut, hello curls, eyebrows, and eyelashes. Adios mouth sores. Hello my old friends diarrhea and constipation (manageable).

Of course, a new trial means more biopsies and initially more frequent visits. I’m down with that too.

Looking forward to a fresh start. I’ve got places to go and people to do! Kidding. I mean yes, once upon a time. But pandemic et al, you do you and I’ll do me 😉

But once I start feeling better (a forgone conclusion) and I’ve got my blond locks back, I’ll be back in the game.

xo

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The psych you out psychology of continuous chemo

Posted on October 27, 2020 | 5 comments

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

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Glancing back but also forward. Scrappiness intact.

Posted on October 26, 2020 | 4 comments

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

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Aw fuck

Posted on October 24, 2020 | 1 comment

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

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Mindset

Posted on October 21, 2020 | 2 comments

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

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Dream on

Posted on October 20, 2020 | 2 comments

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

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I had a dream

Posted on October 19, 2020 | 2 comments

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

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The can and the can’t

Posted on October 18, 2020 | 6 comments

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

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