Tag Archives: Death and dying

Clarity.

I am at an interesting place. Truly.

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.

Eyes

wide

open.

Personal skinny

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.

xo