Conflicted About NED

I may be in the minority here, but I have serious reservations about the prospect of being declared NED. For years I have pondered the idea of my scans showing No Evidence of Disease. I have yearned for that clean report, the words rolling musically off the tongue of my oncologist while somewhere in the distance a small orchestra fills the air with the sound of strings. "It's all gone," the doctor will sing. But as joyful as the words would be, even more so as the children's choir joins in, it inevitably feels to me like it would end up in a minor key.

Mapping out uncharted territory

I have never been as close to that position as I am today, though the way my treatment appears to be working I will be even closer tomorrow. And that is a very good thing. But it is a very good thing that makes me feel very nervous because it puts me in uncharted territory.

As much as I might act like I don't need one and certainly avoid using them, I always feel much safer knowing that I have a map to fall back on. Heck, I keep a GPS in my pocket all the time. My road for the past four years may have been bumpy, but at least it was paved and I knew most of the time where it was heading.

Focus on what is known

For me, getting my diagnosis was a relief because it gave me clear information about what was going on and what I then needed to do. I was bummed about the whole metastatic cancer part, and the term "Stage IV" did not fill me with effervescence, but it gave me a solid reference for my life. Likewise, my biopsy failed to provide the kind of news that might have excited me or filled me with fresh optimism -- I had no mutations that were actionable at that time, so targeted drugs and immunotherapy were immediately ruled out. But the biopsy did, again, steer me onto a singular and direct course: chemotherapy.

I knew chemo was not a cure. I knew also that Stage IV lung cancer was generally considered a terminal disease, even if that expiration date was somewhat open-ended. So my goal was not to be forever rid of the disease; more simply, the directive was to get it under control and managed for as long a period as possible. Keeping the tumors stable meant staying alive. And stable they remained under chemotherapy for over two and a half years.

I did not love the feeling of chemo. But I was confident month-to-month that my life was going somewhat according to plan. If nothing else, it was predictable. I could see the tumor every three months, looking more or less like it looked before. Until it wasn't looking that way anymore and I knew that the straight and narrow road I'd been driving along was about to branch off into a series of potentially winding and mountainous options.

Charting a new course

Charting a new course with my oncologist pointed to some difficult terrain and a few roads that changed quickly into those dotted lines of "planned roadways" that had yet to be paved. We tried to hedge our bets with targeted drugs I was newly qualified for and talked of those alternate paths we would keep in the proverbial back pocket because, frankly, they were less likely to work.

Not that the "likely to work" options are always a guarantee. I went through two of those, expecting fabulous results, only to watch immediate progression occur. My map revealed more winding roads than I had anticipated and then came to a sudden dead-end with only two ways out.

At a treatment crossroads

There was the choice to go back to chemotherapy with the addition of a new drug to re-activate the tumor's sensitivity. That came with a promise of shrinking the tumor, but no guarantee of how much or for how long. There was also the choice for a clinical trial on a new targeted drug for the same mutation that I had been unsuccessfully addressing before. We weighed the pros and cons together, knowing that the chemo option would remain in case I needed to abruptly throw things into reverse.

The clinical trial surprised everyone by working. It was physically much harder than chemotherapy in some ways, but it was easier in others and never left me feeling ill or foggy in the head. And eight weeks in, there was very little left of the primary tumor to look at on the CT scan. In fact, there was very little sign of cancer in my lungs, period. What remained reflected just the tiniest fraction of what my tumor was before we started. And shortly I will be going in for another scan to see what the next eight weeks have done.

Trusting my compass

And I just don't know what I am going to do with my map. It is bad enough that I have been riding along on a dotted line for the past few months. But what will it mean when the map is just blank?

Because it never really is just blank. The terrain will still be there. The hills and the oceans and the deserts alike. But without routes to plan along. And without any sort of guide for how to prep my vehicle for travel. I already feel a little lost. So I cling to my compass, holding it in sweaty hands. It's my family and friends pointing that needle northward, my remaining goals the true loadstone. In the end, perhaps my compass will serve me better than lines on a map. I hope so.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.