Tag Archives: stage IV lung cancer

And a few more salient details

I am exhausted. Spent, if you will. Therefore today’s blog is a cut and paste–taken from a message I sent out to my siblings and some close friends.

Another update. Not the kind I like to give. I hadad scans and saw both of my oncologists today. In short, it is still a shitshow in my left lung. Pleural effusion, partial collapse, possible pneumonia and a super aggressive cancer (Alice compared scans that were eight days apart and it had grown). And, unfortunately, my fever returned today–still low grade but not a good sign.

 
Next week I shall have a drain installed in my left lung and on the same day, I shall start back on the same drug that likely caused the pleural effusion–TNO-155–at a lower dose and with the hope that if my lung blows up again, we can control it with the drain.


My oncologist applied for (and received) compassionate use for the 4th gen ALK inhibitor that I had been precluded from (due to too many prior treatments)–TPX-0131. This is a great scenario as she gets to write the protocol. However, with paperwork it will be four to five weeks until I can start. Our goal–bluntly put—is to try to keep me alive that long.

 
This is brutal, I know. However, I thought it best to let you all know. If things don’t change course, I am wrapping it all up and sooner than I expected.


Please know how much I love you all and also that I am going to continue to fight like hell. I just need a miracle 🙂 And–an ask–please look after my kids. They are having a really tough time–Peter told me tonight he is barely holding it together. In the end, it doesn’t matter how much time you’ve had to prepare. None of us are ready.

xo

Time for a proper update

Last we spoke I was post thoracentesis and home with a Z-pack. I had that thora on a Friday and by Monday I was running a fever and experiencing chills. Jess wanted me to go to the ER but I resisted. We made a deal that if my temperature rose, in I would go. When it hit 101 that evening I relented. Per Jess’s instructions, I was not to drive myself

Well, my fabulous landlords rose to the occasion and ferried me to MGH—complete with a blanket and a hot water bottle. They also offered to take care of Kumo–for what would turn out to be an extended stay.

The ER. First they took my temp with one of those little wand-y things, which said I had no fever. It would take another 36 hours for someone to stick a digital thermometer in my mouth and for all to realize that I still had a fever of 101+. If you have a wand-y thing (they screen for COVID with those), throw it out. Piece of shit.

As an oncology patient, I was paid a certain degree of deference. Which meant my own private glass cubicle. But I, like everyone else, had a gurney and no pillow.

Going to the bathroom was a trip. The further you went down the hall, the more it resembled skid row, with gurneys lining the halls (addicts, drunks, psych evals) and people sitting in chairs like hall monitors. Which they essentially were.

‘It would be my unfortune (not a word, but let’s make it one) to spend almost 24 hours in that ER. The nursing staff was exemplary. But the slice of humanity—it’s hard y’all. I saw some guy’s junk (I was on the phone with my friend Annie who said ‘don’t tell a lesbian that!). I was bombarded by bells. Some woman came in screaming ‘don’t you shoot me with that fucking epipen–you killed my kid, I’m going to sue you all’ and so on. Ten minutes later she was quiet and when my nurse came in I commented on that fact. ‘She had some help’ he said. ‘And that’s what she was screaming about’ I replied to which he responded ‘And that’s what happens when you spit on somebody.’

Another of my fellows came in with a police escort of at least seven officers. A big city emergency room is, quite simply, a portal to hell.

When I was admitted, it was to a room with a roommate. In short, a hospital is no place to heal.

However, my situation was such that I needed to be stabilized. A complex cocktail of intravenous antibiotics. A second thoracentesis. Discussion as to the fact that if my fever did not abate, we might need to attribute it to my cancer—which remained so obscured by pneumonia and the pleural effusion—it could not be assessed.

It was a scary time. A time of difficult possibilities and discussion around whether or not these were in fact probabilities.

And of course, the demands of life continued. I needed to vacate my studio. Stat. And now physically impossible. I called Annie–said I needed a project manager. She—without hesitation—agreed. I then sent out an email to some of my closest friends and my youngest son. While I was in hospital, Annie drove two hours to my house, got the key to my apartment from my landlord, and then met my friend Marc at my studio to start packing. The next day they were joined by Brian, Chi and Susan.

My son Peter had the task of bringing me home from the hospital on Saturday, but on Sunday he joined those assembled. And this marvelous crew both packed up and moved most of the contents of my studio. Unflipping believable.

Of course, there were other matters to attend to. Melinda and Diane tag teamed. Once I was released, Melinda and our friend Amy came to my house to cook but also to help me tie up some important loose ends. My will. ( a visit to the notary). Taxes paid. A spread sheet created for my bills and passwords. Power of attorney to Melinda–as well as giving her access to my bank accounts. And then Melinda went above and beyond–looping in with my financial advisor to help me manage assets.

There are still things to attend to. Copies of keys, arrangements as to how I’d prefer to die and where my body shall go (research) once I do.

Sobering. This head on confrontation with mortality. But also incredibly comforting–wrapping things up. Of course, I still hope this is all a little premature. However, my eyes are wide open. Stage IV lung cancer, a massive pleural effusion and pneumonia are all indicators of a body that is struggling. Tomorrow I have another chest CT and will meet with Jess. It is likely my left lung will be drained again and possible that a PleurX catheter will have to be installed. Once it’s a tad drier in there, we can figure out what’s been going on with my cancer. And make some choices as to how to move forward.

Forward 🙂

xo

Ok but not

I will be ok.

But not today. Today I am taking a break from everything’s fine. Because I truly am not. Not ok with split fingertips, pustular acne, bowels that are hopelessly confused by the addition of iron.

Nausea, which has me running for a bowl at least once a week. Mouth sores. Blisters on my eyeballs, which admittedly I didn’t even know were there until my retinal exam on Thursday and yet are serious enough that I’m out of another treatment option.

That. Another dead end.

But really, did I want to continue with all these troublesome side effects? In my heart of hearts, I did not. But I also preferred the idea of me being the one to initiate the break up.

However, I am looking forward to smooth skin, hands that don’t hurt, my tongue and gums not riddled with sores. And eyes that keep on seeing–that one is very important.

I received my second COVID vaccine several hours ago–something I am so very grateful for. As I developed a low grade fever after the first one I imagine I’ll be laying low tomorrow.

And then on Monday, a trip to Boston and some interesting discussion as to what happens next.

Dream home

I have been close enough to being homeless that I never take a roof over my head for granted. Never. Ever. On walks, I instinctively look for the place I would bed down if needed. And whenever the weather is particularly inclement I repeat, like a prayer/chant/mantra–I am glad I have a home. My first two children, who were almost homeless with me, grew up hearing these words. And I would imagine it is something that remains firmly ingrained.

My current apartment is lovely. Good bones, both physically and psychologically. I am grateful I landed here before the pandemic. And also grateful that I have the money to pay rent.

However, this unit is missing a few things that are on my wish list for forever home. A bath tub, for nights like tonight that are not just cold, but bone chillingly damp. A hot bath, good book and a glass of wine are all I need to set the world right sometimes.

A fireplace. That smell, that crackle, and once again, that warmth.

Laundry room. Not even necessarily a room, but someplace other than an earthen floored basement down a rickety staircase.

Fenced in yard. I love walking Kumo but then again, sometimes it would be nice to open a door and simply tell him to go. It is supposed to get down to ten degrees tonight, and the wind is howling. This is the sort of scenario I have in mind. And Kumo? He would love to have some grass to lie in, come spring and summer.

A garden. I so miss growing things. And the incredible meditation that is watering–never a chore, always a damp pleasure.

And now–true pie in the sky. Wouldn’t it be lovely to have a studio just outside my door; to be accessed at all times of the day.

To conclude? Shoot the moon. A partner, to share this all with.

A girl can dream 🙂

xo

Another spin around the block

I am in some sort of semi agitated/unsettled state. It seems I can’t keep my eyes open. But I also cannot sleep. Last week I tried Ritalin and although day one was great (focus! oh rapture!) I also vomited. As binimetinib can make me nauseous I attributed it to that but day two of Ritalin I was intensely sick to my stomach again. And, oddly, sleepy. I took a three hour nap–in the morning. Day three, sleepy, vomiting and there was no day four. Over the weekend I held my binimetinib, in case that was the cause of my droopy eyes.

After emailing Jess about this effect yesterday, I heard back from my scheduler today, asking if I would come in for blood work and possibly a transfusion. The latter because I have also been trending more and more anemic.

In I went, but wouldn’t you know it, my hematocrit had gone up a point and a half. Mystery not solved. The plan for the moment is to continue to hold the binimetinib and I am starting on some prescription iron tabs as well. We shall see.

In the meantime I went to bed tonight around 9:30. My brain was ready but my body was not. First I tried the shaky leg thing, but when that did nothing (sometimes it’s soothing) I found myself making shadow animals on the ceiling. Turns out I’m still pretty adept at rabbit, llama and giraffe.

I was making myself mad though as continuing to lie in bed when you cannot sleep is very quickly fucking annoying. So I got up and made a cup of tea. And now I’m writing a blog. In a couple of minutes I’m going to wheel that bike over to the garage and give sleep another go. Hopefully body and brain will be in accord.

Back to the future

Something extraordinary is going on.

I am, almost sixteen years into this shit, happier than I have ever been.

I love my dog, my kids, my friends, my home. My life, though still full of uncertainty and challenge, feels incredibly rich. I am making art, writing, working (part time consulting), back in the habit of reading–starting with Mary Shelly’s Frankenstein and now Moby Dick. I curtailed a bad habit I’d fallen into–drinking too much–a side effect of the pandemic and, well, despair. Thanks to some patrons? donors? dear friends? I am enjoying a subscription to Hello Fresh and am cooking really tasty meals. I am growing hair, toenails, eyebrows and eyelashes. My skin–initially a mess secondary to binimetinib, is under control with the help of antibiotics, clindamycin and Retin A. Just another adolescence.

The two environments I have been primarily limited to over the past year–studio and apartment–are both spaces that feel safe, comforting and inviting. This is due in no small part to the many friends who have feathered my nest in a variety of ways. Practical things, like a pair of air purifiers. A weighted blanket, that has provided so much comfort. Hats, chocolate, books, flowers, wine, music. Things that smell good. Lotions, creams, oils. These gifts have all added beauty and grace to what was an incredibly difficult year.

My exercise bike is finally getting used. I’m trying to teach Kumo English and in return I am attempting to learn dog. Too long a luddite, I am committing myself to greater computer literacy and a good friend has signed on as tech support. And hygiene. Not personal, again computer. I need to clean up my desktop. And my emails.

Because I am on a combination therapy, the side effect profile has been complex. Historically I have been shamefully noncompliant when it came to filling out my drug diary. I am amending my ways as I feel any information I can provide per the relationship between dosing and side effects is now critical.

I am starting to go through my closet. I need to lose a little more weight before I start trying things on again, but I am looking forward to that time when there is a reason to dress up again. After years of thrift shopping/hunting for vintage clothing, my wardrobe looks a bit like a costume department. I can’t wait to banish my sweatpants to workouts.

Dinner with friends. Movies. Dates. These are all in the future tense but I am beginning to feel a sweet anticipation.

Regular life. What a beautiful thing.

Joy joy joy joy joy

It’s amazing what ecstasy a simple vaccine can bring.

After a year of hiding in my cave I am now able to visualize that moment when I can carefully climb back out again. In fact I have the exact date circled in my calendar. March 20th, two weeks after my second shot. At that point my anxiety can go down so many notches and better yet, I shall be able to spend time in the company of a select few (those who are also two weeks or more out from their second vaccination). People!

After such extreme deprivation (remember, I am an extrovert), this feels like an utter banquet. A wealth, if you will.

Yesterday someone complimented me (via zoom meeting) on my hair cut. Later I realized that if I had been clever, I would have responded that it was not a hair cut, it was a hair grow. Same with my eyebrows. They delight me. I simply cannot stop touching them. And two days ago, one of my eyelashes bumped into the rim of a water glass.

I was alopecic (hairless) for one straight year this time. Got old, it did. Of course my newly boosted self esteem (I like hair) is challenged by the pustular acne and eczema that are secondary to treatment with binimetinib. I never go halfway when it comes to side effects. Fortunately, my team takes these every bit as seriously as I do, and has worked with me to find solutions. As long as insurance doesn’t keep me from filling my prescription for minocycline again, I should be able to get this under control.

Soon I shall be almost as pretty as I once was. That’s a joke. Ode to my brother in law Greg, who will say to my sister Bink, ‘You’re as pretty as you’ll ever be.’ Also a joke. Which reminds me of how my father Ollie once told me that peak intelligence was reached around age eleven. This was erroneous but I was highly anxious. And twelve. So of course I worried.

Anyway, I digress. Happily. After a trying year my life feels a comparative splendor. And about that trying year. I have been doing a lot of middle of the night thinking (insomnia), and recently I was pondering the concept of practice. Both in the Buddhist sense but also totally pragmatic (which Buddhism, after all, really is). Repetition is the essence of practice. If you do something again and again (good and bad habits), it shall manifest.

This past year represented a lot of hard work–emotionally. At times it sucked but, as my son August’s colleague so pithily implored him–’embrace the suck.’ August does. I have. And we’ve both grown.

Now it’s time to bloom.

xo

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.

Linnea

xo

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.

xo

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.

xo