Tag Archives: stage IV lung cancer

Alive and well…again

That ugly image of the open wound is my thumb. It is but one of the nine cuts that currently reside on my fingers. No amount of topical steroids, bag balm or liquid skin will make them go away.

I am also dealing with pustular acne. At the moment, maybe nine little spots. I am given to understand that it can get a lot worse.

One is supposed to leave this sort of thing alone. However, I dare you to simply walk around with a pus-filled little (thank god for little) lesion on your face. No, my ego is sound but not that sound. Anything with the word pus in it must go.

Fortunately the topical antibiotic seems to help. Help is nice but I’m shooting for eradication.

I share this with you (TMI, I know) because, once again, I feel it is important to stress, illustrate, underscore the hoops that those of us with cancer will jump through just to stay alive.

Yeah, I am thrilled about that 57% response. Beats no response or progression all to hell. However, side effects that include spontaneously splitting finger tips and acne of the pustular variety are their own special form of devil’s stew.

So ye who are naturally resplendent in health, rejoice. And regard, with both compassion and respect, your fellows who endeavor to become healthy through unnatural means.

Yours, in both gratitude and frustration.



The numbers are in

What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner, that is my left upper lobe on the right side of each individual image, and my right on the left. And the scan on the left is the most recent one.

This represents, according to RECIST, a 57% response. If you look closely, there was a whole wad of schmutz on the bottom of my left lobe which has just about disappeared. And the greatest area of consolidation, on the upper right of that lobe, is much less diffuse; some adjacent tumor smaller. There was also some activity beginning on the bottom of my right lobe which is no longer discernible. Without question there’s more unimpeded volume/room for air to circulate–ie: breathe.

Just call me a happy camper. Next on the agenda? I want to boost that response to 70%. And then I plan on sustaining it.


Self survival

How did I do it. Emerge intact.

2020 was a beast. 2019 the hellish hors’doeuvre.

Two awful landlords, two impossible moves. Three clinical trials. One full year of infusion and all its attendant side effects with a few unexpected ones thrown in just for fun. A global pandemic. Business partners who (ahem) took financial liberties.

Becoming increasingly breathless, dealing with alopecia as well as mucositis and skin issues, I somehow continued to online date. That was, in retrospect, insanity.

That I have emerged, not only alive, but on the road to some sort of recovery, self esteem alive and well, boy howdy. Implausible. Unlikely as fuck. But, for the record, true. This, I can vouch for.



No longer overdrawn


Alright. So I fantasized that my fever last week was burning out the cancer. I imagined it like toasting marshmallows, with that bad part of my lung just crisping away to ash.

WELL, ladies and gentleman, boys and girls, have I got some news for you. I had a scan this morning and it shows fucking reduction! Never, ever, did I expect to see this kind of positive response at this particular juncture. As I read it (the first time!) I even thought for a moment that perhaps it was a mistake–someone else’s radiology report. But no, that’s my cancer they are describing and it is GETTING SMALLER!

Hugs all around!


Staying in the game

I am watching the Queen’s Gambit on Netflix. Although not a fan of board games (Scrabble aside), I love me a scrappy protagonist. Female, better yet.

This might be the time to mention that I possess confidence. Extraordinary confidence. Not that I shall win, but rather that I have the ability to lose and lose again. And still want to keep playing.

To me, that is by far the most accurate definition of self assuredness. Whatever comes, I can and will handle it.

When I was first diagnosed with lung cancer, I looked at those five year statistics for any stage (14% in 2005) and I said to myself, this is going to be hard, but I can do this.

I based my self assessment on a realistic understanding of my strong points. I had never been the fastest, the strongest, or the smartest. Certainly not the luckiest. But I had a wicked strong streak of stamina. Knock me down and I’ll come right back for more.

Damned if it isn’t one handy quality to be in possession of. As of late my perspective has often been from the ground up. My labs today showed an elevation of Creatine Kinase, and my thighs were hurting—something I attributed to yesterday’s hike on the beach. However, it can also be an indicator of Rhabdomyolysis, which can happen both as a side effect of statin use (high cholesterol is secondary to lorlatinib) and binimetinib. My trend is yet mild (400) but they take this shit seriously, so for the moment I am holding both binimetinib and atorvastin. Tomorrow I have a crown replaced where I have developed a cavity, secondary to mucositis due to my previous therapy. And on Wednesday, I get to spend several hours with an ophthalmologist as I have also developed a mild case of retinopathy, a possible side effect of binimetinib.

In addition, I shall get labs again on Wednesday and if my CK levels are within normal, I am back on binimetinib with a long day of pharmacokinetics at MGH on Thursday and then back again for bloodwork on Friday.

What with all this time devoted to cancer, I hardly have time to be an artist.

I am only sort of joking. Again, this is why I feel participants in clinical trials should be compensated. Enrolling in a trial is often akin to a full time job.

Let’s just hope all this effort achieves its goal—keeping me around so that I can devote time to higher pursuits. Like art. And life.


The push and the pull

My new therapy, or rather combination of therapies, has afforded me more energy. I suspect it is the lorlatinib.

This has felt wonderful. I’ve taken advantage of the amped up feeling to get some major projects done. Long (and rather sad) story short, the vintage clothing business in its current incarnation is kaput. The combination of a pandemic and some major miscommunication between partners and we are no more. Circumstances willing, it shall rise again as a small, manageable, online version. But first things first.

I had to relocate the stock and furnishings, first to one storage unit and then a major downsize to a smaller one. I figure it’s as if I’ve stacked several cords of wood at this point.

There was also an old wooden shelf–heavy as hell–that I wanted to take to my studio. My friend Brian helped me load it into the back of my 4-runner. However, I got that puppy out and up to my studio by myself. My deceased mother (the queen of do it yourself) would have been proud. It was a classic combination of brain and brawn, as I employed physics (tipping and spinning across the parking lot) as well as brute strength (shoving it down the long hall).

My back is pissed as hell right now but there is something oh so satisfying about hard, physical labor.

Of course I wish I could tell you that this surfeit of energy was a positive indicator per the effectiveness of my current therapy.

Not. It is, I am afraid, merely a smoke screen. My shoulder feels better (go figure, after all the lifting) but my lungs sound like shit. When I lie down at night the audible wheeze is often enough to waken me from a deep sleep. A strange sort of bubbling going on as well.

Gross, I know. Even more so if it’s your body. And, fucking A, it means the cancer is just perking along. My big plans and hopes and dreams be damned.

So there you have it. In as plain a language as possible. I am alive but, well, not well. Still strong enough to fight but I’m going to need some more effective tools if I hope to gain some ground here.

And I do. I really do.

A change of plans

So I didn’t climb those 94 steps to my studio yesterday. The night before I awakened feeling both nauseous and lightheaded. I stood up to go downstairs to grab a bowl and immediately knew I needed to lie back down.

The cold floor felt good and I stayed there for several minutes. But I wanted that bowl. I made it to the bottom of the stairs and the next thing I knew I was flat on my back. More concerning, I had peed myself. For a moment I also thought I’d vomited but I realized I was actually foaming at the mouth.

A bit disoriented, I changed out of my wet clothes and went back to bed. In the morning I googled peeing while fainting. There were lots of articles per the reverse–fainting while peeing. And that was when I realized this was likely a seizure.

I emailed Dr. Lin and before very long I had a call from one of my nurses–I was to come in. I grabbed my laptop and a book (just in case) as well as my charging cords. Kumo got dropped off at Susan’s and I drove directly into Boston. And yes, this might not have been the best choice–driving myself–but options are limited when you live alone. Also, note to self, I need to get better about asking for assistance.

Anyway, here I still am. A battery of tests, consults with both onco cardiology and neurology, and thus far, no clue as to cause (it is not thought to be related to the trial drugs). What does seem clear is that I might have had a grand mal seizure.

My guess is that I shall go home with some anti-seizure medication as well as the admonition to remain lying down should I feel lightheaded again. Evidently one of the greatest risks of seizures is injury secondary to falling.

So there you have it. Never a dull moment.

‘I’ll have a side of this…’

Not all side effects are bad ones. Lorlatinib has two that I rather enjoy. Vivid dreams (epic too, I swear I sometimes pick up where I left off the next night) and a surfeit of energy. Good energy, not the jittery heart racing stuff that comes from too much caffeine or (ahem) snorting coke. Or the rage-y artificial high that is secondary to steroids.

This is more akin to the way you feel after a sound night’s sleep. Well rested. Fresh. Ready to seize the day.

I’ll take it. My last therapy was a real buzz kill when it came to energy. And I am energy dependent. Lying around is so not my jam.

Plans, I’ve got big plans. That has always been my MO. And for the last few weeks I have been accomplishing the bare minimum. Tomorrow I am heading to the studio and I could not be more excited. Gonna climb those 94 steps if it kills me. And when I get to the top, art will be made.


Down the hatch

The deed is done; I’ve had my first dose of both lorlatinib and binimetinib. It was all rather anticlimactic, this fifth trial. Sweet, (got two of my favorite nurses back on board), short and efficient.

Afterward I dropped the cake and birthday presents off to my eldest. We air hugged and I hit the road. Forty five minutes later a quick walk for Kumo, then I stripped off the clothes I wore to the hospital and showered (the ritual), and now I’m enjoying a piece of cake for lunch (Happy Birthday Jemesii!).

In a moment I’m crawling into bed with my heating pad. Hopefully I’ll have a nice nap but not before reciting some magic cancer killing incantations. We’ve got work to do, my body and I. Best get right to it.