Dying is a permission. Even might be dying but damned well hope not. Yes, I’ve been taking care of the necessaries. Just exchanged some texts with a dear friend who is an attorney and who is drafting a document that shall specify where I’d like my body to go. Her last text asked about who is to receive my cremains. It is all that casual.
That’s the heavy stuff. On a lighter note I am buying the better bottle of wine. Lying out in the sun, because Vitamin D is good for you and fuck wrinkles–not my problem. Time to–as someone once said–get the good china out.
Death is about letting go. And I am–on so many levels. I’ve started going through my closet, and anything I don’t love is being donated. How freeing is that? And how ironic that the expectation of many years ahead wasn’t all the permission I needed.
That’s life, I suppose. Learning is coming at an accelerated pace these days. Sometimes I feel this is a bit of a joke–the cosmic irony that I should figure so much out now, at the end. Other days I think well what if I do go on living, with my affairs in order and my literal load lightened.
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.
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.
Part of this comes from an overriding sense of it’s time to close up shop-ness. A nice way of saying, I might be dying.
That. But also (and this is the scenario I much prefer), all that hard work is paying off. I’m talking about personal growth and my quest to be a better, saner version of myself. Not long ago my son Peter, our little mensch, made the observation that I was at my most reasonable. I realize that sounds like an incomplete sentence but I knew exactly what he meant. It’s a high compliment and just like my favorite word ok, does not overstate.
I’ve been through a little bit of hell in this lifetime of mine. The good news is there is always a potential benefit to struggle. Think of it as stairs versus escalator. They both get you to the same place but one gives you a bit of a workout, thereby building muscle.
I am strong in body and in spirit. And also brave enough to regard myself with compassion but not charity. This is thread the needle time. And if I want to hold it all together I need to lighten the load. Let go of what is not essential. Revel in that which is.
Reach. But also maintain reason. Rise to the occasion.
I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.
It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.
In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.
Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.
Simply put, barring any new developments, I figure two years.
That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.
However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.
To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.
If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.
Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.
As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.
I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.
It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.
life and breath: outliving lung cancer 