(This is part 11 in a series. Read the previous part hereNew to the series? Start here.)

It’s been some time since I last updated the world (all ten of you?) on how Heidi’s doing, but given the level of busy-ness that Heidi and I deal with on a daily basis, perhaps it’s forgivable.

A lot has happened since the last update: we sold the family house in Tolland; we had a bunch of semi-successful garage sales and such; Heidi and I adventured in Italy for 30 days; we’ve made a couple of trips to South Carolina to visit beach, family, and our southern abode; Heidi sold her business; we bought a beach house; we are in Antarctica as I finish this entry; and we’ve had several trips to Mass General to visit the brilliant minds of Drs. Lin and Schneider.

The news—and I’ll start with the punch line here—is very good, and has remained so, for each of those visits.

But a bunch of emotions are mixed up inside me as I write this. Because even as Heidi’s cancer has been stable, two others in her ROS1ders group have not been as fortunate. I read of the death of a young woman in England whose life had barely started. She has two young children and an active, exciting life. But the cancer wasn’t found until it was too late… until even the best of medicine couldn’t heal her cancer-ravaged body… until her body was so weak that any intervention caused so many side effects that she eventually succumbed to them and to the cancer. I wept tears of sorrow for her, for her family, for her friends. Those tears were also mixed with those of joy, though: for Heidi, for me, for Heidi’s family and friends, that we should not know this kind of loss… yet.


Which leads me to the title, PFS. It may stand for a lot of things (and it does), but most relevantly here it stands for “progression-free survival.” When used in terms of medicine, it usually describes the efficacy of a treatment or progression of a disease, and it’s usually measured in months, at least in the ROS1 cancer circle. The various generations of tyrosine kinase inhibitors (TKIs) have increased the PFS for ROS1 cancers to the neighborhood of 20 months from zero. For example, lorlatinib, the drug of choice for patients whose brains have been invaded by lung cancer cells, has a PFS of 21.0 months for the 21 people who had never been exposed to another TKI who participated in the study.

The cynical side of me wonders if our health insurance company is happy to pay the $12,000-$20,000 per month in drug costs because, well, they won’t have to pay for them for that long, will they? End of my cynical aside. Back to our story.

For those who have been treated previously with another TKI, as Heidi has, that number is 8.5 months PFS for the 40 people in the study for whom lorlatinib was their second TKI. That’s right. If you started taking lorlatinib after crizotanib, say, in November of 2021, by now there’s a good chance that your cancer has resumed its unholy march through your body, unhindered and free to roam. And since it’s November of 2022, perhaps you’re thinking that you’re living on borrowed time.

That’s why “yet” and “PFS” are two three-letter words that are kind of important to us right now. And why we count every day beyond the 8.5 months PFS as a blessing, as bonus time.

However, it turns out that Heidi has been living on borrowed time in the first place. Her cancer was in the works for five years before the discovery of the metastatic tumors in 2020, so at this point, she’s eight years after her initial diagnosis. Sure, tests didn’t exist for ROS1 at that time. But that she has had little to no progression in those five years? Miraculous. As Thanksgiving weekend comes and goes, we are incredibly grateful to God for the gifts that he has given us. (See the second paragraph.)

As I write this, though, something has been niggling at the back of my head, because I discovered that I, too, have a PFS. That’s right, folks, I have an expiration date! I think I’ve related it before, but just in case I haven’t (and HIPAA be damned) I have polycythemia vera, and it’s a “lower-case ‘c’” cancer, one that isn’t malignant and which can be managed by, of all things, leeching.

OK, not leeches. But “bloodletting” doesn’t sound quite as exciting, as medieval as it still sounds. 

And until pretty recently, I was blissfully unaware that the underlying disease, while treatable with a maintenance regime of dropping off a pint of blood every now and then (which the American Red Cross doesn’t want, unfortunately), actually comes with a PFS of its own. Now, it’s measured in years instead of months, but it’s significantly less years than I had thought I might live. It’s still pretty generous, at 24.5 years or so, leaving me with the work of making it past Heart Attack Alley at 56 years and some other significant male hurdles we have to get through to make it to 90. With a father at 90 and a mother at 81, I thought I had more than a better-than-even shot of getting on up in years, and maybe because of good genes, I still do. But I could just as easily be the lower end of that bell curve as the upper end, and that put a new spin on my life’s outlook.

So, kids, I’m sorry to say this, but you’re not getting any cash from me. Instead, Heidi and I are going to do our damndest to outlive our PFSs—if need be, we’ll do it in poverty, just so long as we enjoy the time together, the places we are together, and the family which is willing to stand alongside us as we battle it out.

Because life is more than a statistic. Sure, the actuaries will tell you that it’s all quantifiable. They’ll look at my self-induced doughy middle, Heidi’s metabolism-induced “pleasant figure for, say, the 18th century,” and give probabilities that we just won’t make it.

To them, I say, Y’all haven’t met us yet. We’ve made it this far, and we’re going to make it a lot longer!

To PFS—and beyond!

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