Category Archives: Uncategorized

Row, row, row the boat

I am adrift. Not emotionally, not metaphorically–really, truly at sea.

First, my housing situation; non tenable in all respects and something that has weighed heavily upon my mind for weeks now. There will be a solution but at the moment, it is not obvious.

And then, more importantly, my health.

Lungs and Airways: The patient is status post left lower lobectomy. There is essentially stable ground glass opacity in the left upper lobe on image 64, measures 3.7 cm, measured 3.64 cm in November 2018 . There is essentially stable more confluent consolidative opacity in the LEFT lower lung, along the diaphragm, best seen on image 96. Multiple other ground glass and solid nodular opacities are essentially stable, for example in the RIGHT upper lobe on image 46, 51, LEFT lung on images 51, and 89.

As reassuring as my last scan was, the fact remains that I have multiple areas of cancer in both lungs. And, at long last, some information from the biopsy on 12/14/18.

Essentially, in addition to G1202R, I have now acquired two more secondary mutations, both of which are conferring resistance by compromising the ability of lorlatinib to bind. G1269A and S1206—I am not certain of the letter following 6 on the second mutation but it is no longer Y. More importantly, neither of these newly acquired mutations is actionable. As in, there is no next therapy.

Adrift without a paddle, as it were. Or maybe a more apt metaphor is that I am in possession of one paddle yet, but it is busted. And that would be lorlatinib.

I am still expressing ALK, so Alice is hopeful that lorlatinib continues to confer partial resistance. As she put it, the cancer is working very hard to get around it. My job, in a nutshell, is to hold on (stay alive) until a 4th generation ALK inhibitor is developed.

Big sigh. This is the time to think possible not probable. And also to not only get that good china out, but to use it at every damn meal.

xo


Keeping some good company

What does it say about the world of lung cancer advocacy that all the people in this online magazine are my friends. Proud, proud, proud to know these folks and fingers crossed that ten years from now we’ll do a reprise. I’m talking to you Julie, Andy, Sara ❤

PS: I’m the tall girl flipping a peace sign at Machu Picchu. Pg 24. Inside joke. Whenever I’m meeting an online date somewhere for the first time, I tell them ‘I’ll be the tall girl.’ I crack myself up 🙂

Oh Lorbrena

Like some fancy fantasy girlfriend, the drug formerly known as lorlatinib has been rebranded Lorbrena. And not a cheap date, Lorbrena. Check out these over the counter prices for a months supply:

However, even given her top shelf status, my Lorbrena is handed over in a brown paper bag to be carted home wino style. A brown paper bag that evidently blends into the surroundings so very well, I simply forgot it was there.

Yep. One whole week without taking my cancer meds. Blame it on stress; they sprayed my loft for bedbugs for the third time this week, on the same day I was getting surgery on four ingrown toenails that are an apparent side effect of hanging out with Lobrena all these years. And change; August and Lily moving out did a number on me. Then there’s memory; I just can’t. Remember. And it’s getting worse with time.

So there you have it. Gotta say, I enjoyed my little respite but starting up again resulted in a full on case of the runs and the shakes; just like our first date so very many years ago. And now, in order to keep this relationship on track, I need to begin (duh) setting an alarm to remind me to take my meds. That is, if I can remember to. Maybe I’ll even start filling out the daily diary (I usually do it in the office and when my nurse comes in, I sing a little song ‘making shit up, making shit up.’ Honestly. I am not non compliant for the sake of non compliance but those diaries are busy work. And, this being 2019, you might think we’d have a more sophisticated mechanism for capturing supposed data than a worksheet. I’m over it.

But the taking of the meds? I need to be on it.

Where your thoughts hang out

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.

These are mine, this is mine.

Peter has been in Hawaii for the past week, studying the environment with his program at MIT. He has been sending me joyful photos of jungle, ocean, volcanic ash. Obviously he is in his element and it makes me oh so happy. I just hope he comes home to New England 😉

And August and Lily made it to Toledo, despite some momentary drama the morning of their departure. It was the day with single digit temperatures and when Aug hit the highway, his car started shaking violently. Fortunately I have THE BEST MECHANIC IN THE WORLD (J & R Auto Repair in Chelmsford MA) and Aug turned around and headed straight there. John (of J & R) took one look at the car and diagnosed ice in the rims and prescribed a good spray at the carwash as the solution. John is honest, smart, kind and a bit of a mensch–he sent that kid off without charging him a dime. ❤

Of course I’m missing August already and fortunately the feeling is mutual. He sent me this text from the road: “I miss you a ton mom. The last few months were some of the best of my life.” Swoon. And then Facebook gifted me with a reminder of the backpack I received from Aug last Christmas. There is a little clear plastic sleeve for name and address and August filled it in with this precious message:

❤

Being a mom hasn’t always been easy but it has always been the best. My three kids have taught me more than anyone or anything else and I love them to the moon and back. I take nothing for granted and am so profoundly grateful that I have had the opportunity to see them grow into adulthood.

Thank you medical research. Keep up the good work 😉

The utter awesomeness of unremarkable

Quick report here starting with a simple turn of phrase. In the topsy turvy world of cancer, where progression is unwelcome, the word unremarkable is a guest of honor. Dull, uninteresting, common, ordinary.

In describing my latest scan, Alice used that parlance—the tumor abutting my heart is unremarkable. More than likely it is the schmutz in the bottom of my lung that is responsible for both cough and shortness of breath. However, most reassuringly, that area of cancer has not changed in the two months since my biopsy. Hopefully this is indicative of a less aggressive spread.

Per the biopsy itself, results are pending. Thus far we have one tiny nugget of information; my cancer shows no MET amplification. By the end of the week, we should know more.

In the meantime, I think I need to stop feeling sorry for myself. Not let the bedbugs (they will be spraying a third time) get me down. Drag my ass back to the gym. Start painting again. Maybe go on some more dates.

Cut back on the gloom and start feeding my mojo instead.

Suggestions welcome 🙂

A-void

Before my last scan–the one that showed progression–I was anxious. But that was because I knew something was up.

In the four plus years prior, I had let go of scanxiety. However, that was possible because of a sustained period of stability. Stability was the closest thing I’ve had to feeling truly safe in the last fourteen years and it was freaking glorious.

Now that I’m back on that active cancer rollercoaster, scans are once again something to be dreaded. However, there is a difference in how I feel this time around. It is not anxiety. Hell, I know what’s coming; it’s more like I just don’t want to know. It’s as if there’s a big fat court summons lying in a sealed envelope on my kitchen table and as long as I don’t open it I can keep pretending that it’s just not there.

Scanvoidance. That’s my new terminology. The goddamn it why-do-I-have to-live-these-month-to-month blues.

Gets old, it does. But then again, so have I. Older. And that’s something to embrace.

I’ll keep you posted.