Tag Archives: living with a terminal illness

Going for anything at all

I was exceedingly hopeful that the sound in my lungs had abated. It was almost comical when I realized that it was simply a matter of position–I had been sleeping on my right side and my right side only. Once I rolled over, there it was.

Did I say almost comical? In truth, my left lung offends me. Were it anatomically possible, I would simply reach down my throat and yank the corrupted lobe from its stem. And if you know me, really know me, you understand that I am not joking.

It is maddening to realize that the whole damn affair can be brought to a close by one errant organ. Why must it be an essential one? The appendix is underworked. Could it not spend some of its spare time learning how to breathe?

I will know more after my upcoming scans but I must say that I do not believe this combo is my panacea. If it were, I would not have to stop to catch my breath on every landing as I make my way up the 94 stairs to my studio. And if it were, my lung wouldn’t continue to crackle and hiss and moan.

Oh to draw air freely. To once again be strong and fit and able to believe that I wasn’t simply winding things down.

It could still happen. Part of me believes it will–that there is no other acceptable outcome. But another, rational part of me understands that I am like any other. And that tomorrow is–always has been–a maybe.


Drop in NSCLC mortality

So that’s a good thing, right?

Well of course it is. However, let’s discuss.

Statistics show that those of us with non small cell lung cancer are living longer. This is attributed in large part to targeted therapies.

I can’t argue with any of that. I expected to die more than a decade ago, but thanks to TKI’s, I’m still here. And fully fucking grateful at my good fortune.

But let’s not fool ourselves. Living longer is a consolation prize.

Yup. It is not even in the same ball park as assuming you will reach old age. Those of us surviving lung cancer are doing it day by day, month by month, and year by year.

Not only does it take courage, it requires an extraordinary amount of grace to be grateful for the short end of the stick. And from time to time I feel compelled to remind others of this fact.

What most can take for granted, those of us living with terminal illnesses hold dear. It’s the difference between being lost in the desert with a full canteen of water and one that is almost empty.

We cannot afford to be wasteful, and yet that impulse to take a big gulp is still there. So yes, grace and self control.

And the ability to savor. Every last drop.


On the move

Peripatetic. Such has been my existence as of late.

No complaints. I have always craved the traveling life and feel extremely fortunate that I have been provided with these opportunities.

First, the annual Hope Summit sponsored by LUNGevity and now referred to by some acronym I shall never use (the world doesn’t need another acronym, but it can never get enough HOPE).

Each year this giant reunion of my lung cancer family becomes ever more meaningful. One big love fest. And given the fact that the majority of the attendees are living with a terminal illness, you’d never believe how much fun we cram into those few days.

People who have been living with lung cancer for ten+ years

LUNGevity outdid themselves this year, with the best lineup of speakers yet. I was honored to be part of a committee that planned the conference as well as to sit on a panel, ostensibly about palliative care, but titled Sex, Drugs and Rock and Roll. Next year I think we should drop the pretense and just jump right into an extended conversation per the living part of dying.

A little over a week post conference, I returned to DC for my annual get together with some of my childhood friends. We can’t not have a good time (really) and they too are like family to me. Kate, Melinda, Sally—I love you so.

When grownups take a selfie: Kate and me and a monument

I caught my breath (sort of) before departing for Florence, Italy on the 27th of May. This was an opportunity that came about because A. my friend Marc comes to Florence every summer and invited all his friends to join him and B. as I just turned 59 and 1/2, I have access to my retirement fund without penalty. If I thought I was going to live to 80 I might not touch it but friends, the reality is somewhat different. And in its own way, freeing.

It’s going to be interesting to see if I run out of money or breath first. Fortunately I now have a little wiggle room in both areas and I’m going to give life a run for its money. So to speak.

So yes, Florence. Dream of a lifetime. Second full day here we climbed the Duomo. 463 steps up, 463 down. I did it, y’all. Fourth in line and only had to let four people pass me on the way up. All young enough to be my children. Own that, lung cancer.

And of course I have been taking lots and lots of photos. Should you like to share in some of my experience, give me a follow on instagram: @Linnea Olson.