More Missive Than Postcard

Dry Ice, a Fedex Dash, a Sermon, Scottsdale, and You

This girlie is off to college soon! The one on the right :)

Dear Friends —

Many of you have checked in on me in recent weeks, curious to know how I’m faring with chemo and the itty bitties in my lung and all the rest. I’m forever grateful to be surrounded by such extraordinary friends, so here’s a hearty thank you for keeping me close to your heart, and your prayers.

There are several updates to share.

But before we get to the updates, I’ll start by noting I feel perfectly healthy these days. My sweet Lucy is just weeks away from graduating from high school and spring celebrations are in high gear.

Now I’d encourage you to get comfy. This post starts with a story that began back in December of 2019.

Some of you might remember that December 2019 was a fragile month. I was preparing for a major abdominal surgery; it was advent and the days were dark. A waiting time filled with hope and tenderness. During that month, my brother — who happens to be a pastor at a church in Scottsdale — preached a sermon that included a little reference to his lovely sister who was days away from a scary surgery day. And that Sunday, there was a man sitting in the pews listening so very carefully.

After the service, this man wandered up to my brother to have a chat. He asked about me, with a range of follow up questions about my diagnosis. Sidebar here for those of you who don’t live on Planet Cancer — this kind of thing happens more than you might think. So many of us have been touched by a hard cancer diagnosis. It’s common to hear from someone who has a cousin who tried something in Peru, or someone who knows a doctor who’s trying a new approach. It’s terrific, but these conversations always have to be held with a certain lightness given that so few of us are actually experts in these matters.

But as it turns out, the man chatting with my brother happened to be an expert. He was a doctor — we’ll call him Dr. V — from the Mayo Clinic who had helped form a lab that specialized in abdominal cancers, and he suggested to my brother that he have a chat with me.

Weeks after my surgery, I had a chat with Dr. V over the phone. He was lovely, and encouraged me to someday have a consult with his colon cancer specialist colleague, Dr. S. “Oh sure that would be wonderful,” I said at the time. “But I’m in good shape these days, so not sure it’s urgent. That said, the next time I’m in Scottsdale perhaps Dr. S and I could meet.”

Weeks later I was back in the thick of it when we saw that I had a stray itty bitty in my lung. And it was around that time that I visited my brother and his family, and made a point to line up time with Dr. S. He gave me lots of helpful insights, and more or less confirmed what I had been hearing from my terrific team at Stanford and UCSF. But then he said something else: “If you elect to have that small lung met surgically removed, be sure to send the tissue sample to me at this lab and we can do a more extensive analysis of your specific biomarkers. This may prove useful down the line. The science is always moving forward.”

“You bet!” I said as I hopped off the exam table.

I thought Dr S. was wonderful, but probably a bit cameo player in my story.

Fast forward four months to May 2020. You may remember that this was the time of my own Met Gala when I had the stray itty bitty removed by the ever remarkable Dr. K2 at UCSF. But knowing Dr S expressed interest in getting to know the itty bitty better than anyone, I asked the UCSF crew to pack it up on dry ice so we could have it shipped down to Scottsdale for a looksie.

Oh wait! I know what you all are thinking because you all are some of the smartest smarties I know. May 2020 was the height of the pandemic days. Nothing was easy then! So did I have a dear friend take a cooler packed with dry ice and my itty bitty, load it up in his car, and drive all around San Francisco in search of an open Fedex location to get it to Dr. S within 24 hours? In fact I did. We could write a whole blog about that part of the story, but I’ve got to keep this saga moving along.

The cooler arrived in time and Dr S and his most magnificent lab techs did a full scrub of the itty bitty. About a month later I became the proud owner of a 19 page power point deck that provided thousands of clues about the itty bitty. I understood barely any of it. But I did understand this: it was fascinating, and could someday come in handy. I shared all of the findings with my medical team and they all said: “This is fascinating and could someday come in handy.”

And that was that.

Just one of several pages of Dr S’s findings. That +50.7 is apparently important.

Fast forward to this past December. Many might remember we were giving thanks for the good progress from my scan that month. After a few chemo cycles, we saw that Foxy and her mighty fighter jets had a strong and true aim, and it seemed as if I was on the right — albeit arduous — path.

Then January came. I had a terrible reaction to Foxy, and my oncologist pulled it. I was warned from day one that eventually most patients develop an allergic reaction to Foxy, and after 16 rounds over 3.5 years, this lady reached her limit. A tough day.

Faithful readers will remember there are two chemo agents for colon cancer: Folfox (Foxy) and Folfiri (which we called Moxie back in the day). So a core card was pulled from my hand, I took a deep breath, and prepared to step into a few cycles of Moxie to keep the indolent itty bitties lazy and on the couch and ordering pizza and not throwing away the pizza boxes because they were so lazy.

Even more faithful readers will remember something called a CEA score. This is a lab result I get with each chemo cycle — a normal CEA score is between 0-2. When I started my mountain climb I came in hot: a CEA of 325 (I know). Back in January my CEA was a stable 2, a lovely indicator that Foxy had done good work.

But two weeks ago my CEA jumped up to 12. What on earth. That number can bounce around some, but it’s always tracked well with my treatment. That is, as I’ve been getting at the itty bitties, that number has always tracked down, or stayed stable. So something was up. Were my itty bitties all of a sudden training for a 10k, or worse?

I moved up my scan to happen days later, along with an appointment with the always wonderful Dr. K at UCSF. For those who want the director’s cut of the story, shoot me an email and I will tell you all about how I had to get the images scanned on a CD just like it was 1998 and how I drove like a mad woman up to UCSF in time for Dr. K to read the images before our appointment, only to find out during the appointment that “the system” hadn’t loaded the images in time for him to read them … oh never mind. You get the point. The appointment with Dr K was a mini disaster. He had nothing to read, but he also confirmed that most likely the itty bitties were no longer lazy. Hard.

There was more. Dr. K said it was time for me to investigate a range of possibilities now in motion through clinical trials underway for colon cancer patients like me. “There are remarkable breakthroughs happening,” he said. “It may be time to investigate.”

I get it. If you’re still reading, you’re getting a little nervous. The words “clinical” and “trial” can spark a whole parade of butterflies to flutter about in our stomachs. All of this is true. And here’s what else is true — powerful breakthroughs, especially in immunotherapy techniques, are in motion. Chemo can do important and good work, but it’s never been a pathway to longterm healing for me. So I’ve always known that, eventually, I most likely would find my way to a trial when the time was right.

And that time is now. I think.

As it turns out, in recent weeks I’ve been connected to the most magnificent souls at the Colorectal Cancer Alliance, our nation’s leading advocacy organization for what’s now the second leading cause of cancer deaths in the US. And as I’ve gotten to know their work, I’ve learned about some of these trials, and I’ve been amazed. There are miracles on the horizon.

So with Dr K’s clear direction about my possible next step, I opened my laptop and reviewed the treasures of resources my new best friends from the CCA had sent my way, and found the trial that seemed the most promising. Sitting there in the waiting room at UCSF, I noticed that trial CCA had highlighted for me had a location in — wait for it — Scottsdale. Any guess on who the trial director there might be? Mmm hmm. Dr. S.

You simply cannot make any of this up.

I tapped him an email sitting there at UCSF. “Hello Dr. S! Amy Low here. You might remember me from three years ago …” And I went on to give him the latest update, praying that maybe I’d hear back within … oh I don’t know … maybe a month.

Instead he wrote back five minutes later. He asked a couple of technical questions, and then wrote this. “I would like to see you this Monday. In person.”

And so it was that this Monday I flew to Scottsdale to meet with Dr. S. My brother came along, lovely poetry given that he set this whole particular plot line in motion. Plus we arranged to go to the World Series of Baseball game later that night, and by the way, USA beat Canada 12-1.

Anyhow, Dr S had all kinds of things to say. Again, we understood barely any of it. But the headline was this: I’ve reviewed all of your data we collected three years ago, and you’re likely an excellent candidate for this new immunotherapy phase II trial and this is your window of opportunity.

“Wow,” I said. “Wow,” again. And then, “how does this work?”

“Very straightforward,” Dr. S said. “You’ll get treatment or have an evaluation here once a week. For 24 weeks.”

If you’re still reading, now you’re really getting nervous. 24 weeks?! That means this lady will be spending at least one day a week in Scottsdale throughout the summer and Scottsdale is like 112 degrees in the summer. I know. Let’s not worry about it.

Instead, let’s take a moment to marvel at it all. From a lovely brother’s sermon, to a good listener in the pews, to a responsive researcher who sent directions about dry ice, to a skilled surgeon at UCSF who packed up the itty bitty just so, to a heroic friend who galloped all over San Francisco to find a Fedex place open during the pandemic, to amazing lab people who did something ridiculously complicated to discover hidden clues in my itty bitty, to devoted advocates at the CCA who equipped me with powerful intel, to Dr. S who responded to my email. Each moment is its own miracle.

So what’s next? There’s a little more checking to do to see if I qualify for this trial, or maybe there might be an even better one I’ll pursue. Lots in motion.

But there’s a more urgent next step, and it’s this: I am giving thanks for all of you. Many of you so faithfully remind me that you’re keeping me in your prayers, or sending your good vibes my way. Guess what. They are working.

Are they working to a complete cure and happily ever after? I have no idea, and actually I’m not sure that’s the point. There will no doubt be some glorious days ahead, and some horrific days too. I believe the point is this: your prayers are helping me daily remember that my health adventure is part of a far grander story, one that transcends a crappy scan, and even an immunotherapy breakthrough.

Your prayers help set in motion all of the above, but far more crucially, your prayers have given me eyes to gaze in wonder at it all.

A new part of the mountain is now ahead of me, and us. Because you’re surrounding me. Each step of the way. It’s why I’m still climbing, and savoring such a glorious view.

xoxo

P.S. There’s a decent chance that my new best friends may very well be Southwest Airlines flight attendants in the weeks to come.