Revisiting "Mostly Stable"

On Tuesday, I told you for the eighth time that Abi’s scan results showed that she's “mostly stable."

And in the past, I’ve explained this means the chemo is advancing on the disease in some areas, but in other areas, the cancer is progressing – albeit slowly. At the macro level, the progression and the regression are roughly the same, and that we're continuing with the next round of treatment.

She just might kill me for this. 

She just might kill me for this. 

This week’s report felt a little different. The overall report is the same. Some growth. Some decrease. About the same overall, and Abi is being treated again.

Mostly stable.

But this week, Dr. McGaughey brought up the images of past scans, as well as the most recent one. We were able to see the differences. Not through the radiologist's reading, but through our own eyes.

Abi and John were reviewing the scan images with the doctor, but I was able to see over their shoulders.  Honestly, I didn’t pay all that much attention to the areas where the disease is diminishing. My eyes were drawn to the areas where there appears to be growth. To the areas in the screen that were brighter than they used to be.  

Dark is good. Bright is bad.

It was sobering to see areas that had once been completely dark (i.e., clear) appear to be lighting up. Not necessarily brightly, or not necessarily extensively, but there are clearly lesions where there were none before – at least to my untrained, non-radiologist eyes.  When initially diagnosed, the disease in Abi’s bones was limited to her femur and pelvis. It’s now in more areas of her spine, and at the base of her skull. 

Looking back on Tuesday, I now remember the doctor saying that a number of lesions in her lymph nodes have shrunk or even cleared, and that there were areas on her liver where the amount of disease had diminished. But I wasn’t listening to that. From the scans, it appeared clear that while the overall amount of disease might be about the same, the cancer is, in fact spreading, at least in some areas of her body.

I should not have been surprised, I know.

Dr. McGaughey was nothing if not direct in her diagnosis last February:

Abi has high grade, stage IV, neuro-endocrine cancer.”

Nor did he mince words with her prognosis:

The one year survival rate for this disease is 50%.”

But I was surprised.

It’s been easy for me to set aside what Dr. McGaughey said over a year ago when I see my daughter walking over 17-thousand steps through San Francisco in a single day, or hiking through some of the challenging stretches of Point Lobos, or climbing out on a rock at Big Sur that hangs one-thousand feet over the Pacific Ocean (that terrifies both John and me), or spending a day on the wine trail, and going just as hard as any of us. When she leaves for a weekend in Duck with her camp friends just a few hours after completing a round of chemo (like she did today). When I hear her and John planning trips to Charlottesville and Ashville and London and Old Rag.

When I see her plow through the one year anniversary of her diagnosis in (seemingly) less pain than she was in the months leading up to her diagnosis.

It’s easy to forget what the doctor told us when I see Abi smile. And Abi smiles a lot.

It’s really easy to hear “mostly static” when Doctor McGaughey actually says, “mostly stable.” Easy to convince myself that the disease is the same (or better) today as it was a year ago. That the chemo isn’t losing any ground - even if it’s not advancing.   That every month we've reset the survival rate for another year. That Abi can be treated with chemo – not just indefinitely – but forever.  Or at least until she “feels crappy.”

But that’s not what Dr. McGaughey said Tuesday. He’s never once said those things for any of the 8 scan readings.  And it was tough to see how the disease has progressed. To be reminded of what Abi and John are up against. This is no easy journey. Even if they often have the grace to make it look far easier than we expect it to look.

On Tuesday, Dr. McGaughey thoughtfully explained how he's more comfortable with new spots in her bones than he would be if the growth was in her liver, or another more vulnerable vital organ. That while we're in a gray area, he continues to be confident that indefinite chemotherapy, which we know is working to hold the disease at bay in the aggregate, is better than risking immunotherapy. 

Immunotherapy may work. It may completely eliminate the cancer. 

It may also fail completely, and unleash a high-grade cancer, allowing it to spread far more aggressively than it has for the last 13 months. 

And of course, there's no way of knowing which way a new regimen will go until we try it. Dr. McGaughey said, "Unfortunately, every patient has to serve as his/her own experiment."

Where does that leave us? Mostly - at the same place we were before getting the scan results.  Abi wrapped up her last day of round 19 a couple of hours ago.  Assuming things stay the same, she’ll be back for round 20 in three weeks, and we’ll keep waiting for that something to tell us we’ve crossed the line, and it’s time to transition to immunotherapy. 

We don’t know exactly what that something looks like. If this week taught us anything, it’s that the line between chemo and immunotherapy is mudgey at best.  We hope to recognize it when we get there.

But perhaps more important, this week has been a reminder that every day we have with one another is a bonus day – a gift – and it’s our duty to treat each day with respect and gratitude.  And to cherish every single moment we have with those we love.

Sometimes I struggle to hear that message over the din of the routine. 

In love,