The end of this chapter, the start of the next

May 13, 2022 is a day I’ll remember forever — it was the day I got my diagnosis, somewhat unexpectedly delivered in a handy PDF file that I could read on my phone, on a Friday evening, while walking back home from a beachside beer with friends, and with my doctors unavailable until Monday. Thanks, modern medicine? What a moment that was.

The last few months have been a cycle of medicines and flights and infusions and clinics and all the things that make up modern cancer treatment. In some ways it feels like it went by so fast. In other ways it feels like I’ve been at this forever. In some ways I feel the same. In some ways I feel very different. Now here I am—one day shy of five months later—flying back to DC for a very different kind of visit.

As of last week, my treatment is complete (!!!). No more pills, no more infusions, no more monthly flights to DC, no more dragging my body around willing its energy to return. The last few days have been a dream, spent at concerts with Esther; with friends hiking and sitting around fire pits drinking homemade mead; and with myself in the feeling of a home-free body. Also with my dentist getting my teeth cleaned (OK, I could have done without that). Today Esther and I are flying back to DC for my final tests, to see if the treatment did what we all hope it did, to see if the cancer—at least for now—has been sent packing.

So far 100% of mantle cell lymphoma patients on the ViPOR trial have won their remission. It’s an astounding number for any treatment; it’s particularly amazing given many of those patients have already been through other treatments, many of those with little to no success. And while I’m always up for blazing new ground, I’d very much prefer to join the crowd on this one. I’d like to be part of that 100%. I feel very optimistic about that, as do the doctors.

Tomorrow (starting at 6:30am, or... 3:30am Pacific time 💀) I’ll go through the battery of tests: blood work, CT scans, and most importantly, the PET scan. The PET (or “Positron Emission Tomography”, which I’m sure means something) highlights areas of active cancer — on the images they glow bright white relative to the other tissues and organs in the body, making it obvious where cancer is present.

My first PET scan (at the NIH shortly before starting the trial) was a sight to behold. If you are OK with viewing freaky medical images, you can see it here, otherwise just read on. Basically, my abdomen had been completely taken over by the cancerous tumor, which had clearly been growing for some time. It was a shocking image to see, not just for us but for the doctors too. It didn’t at all line up with how I felt in my body, with how minor my symptoms had been at that point.

I haven’t had a PET scan since that first one and though my later CT scans showed the tumor shrinking fast in the early treatment, they also showed that there will be some remnants of it still lingering — more than likely as scar tissue, not as cancer. But we won’t know for sure until tomorrow. So obviously I’m hoping to see ... well ... nothing. The results of that test will be the biggest indicator of whether or not I’ve put this thing into remission.

I’m sure I’ll sleep great tonight. 😬

This has been an unexpected and challenging and complex and somewhat ridiculous journey, a lot of which I still haven’t fully processed or put to words, heads-down in treatment as I have been. And of course, it’s not the end of the journey — with cancer, there’s never really an end — but this is an end. I suspect the next few months will be a period of reflection and a lot of change. It’s so easy in life to fall onto a path and into our patterns — even if we love where we are (as I genuinely do) we often arrive there unconsciously, and we stay unaware of the infinite number of paths we could take with our next step. This experience has given me a new awareness and a new perspective on my life and especially my mortality that I know will affect the rest of my life, in ways I can’t predict (and which I won’t try to). I just don’t really know what to do with it all yet, except take that next step, consciously.

Start with
the ground
you know,
the pale ground
beneath your feet,
your own
way to begin
the conversation.

— David Whyte, Start Close In

Whatever lies ahead, I’m thankful that it will be something different. I feel so grateful for the people that have surrounded me on this journey — my wife Esther, who has been by my side and has kept our lives together as she’s watched me trudge through this, and in the face of her own fears; my family, who has been my amateur research team and my champions from afar; my friends, who have kept me smiling and in good spirits with their texts and letters and visits and walks; my incredible team of nurses and doctors at the NIH who work their asses off on the noblest of missions and do it with so much heart and care. No matter what happens tomorrow, my heart is full and my life has been forever touched. Thank you.

See you all tomorrow.