6/3/25

Hi there. Been a while since I've posted an update, so sharing along the latest!

It's now been seven weeks since the surgery to remove a chunk of my liver (and my gallbladder got taken as collateral damage...too tucked up in there with the liver not to go). The healing from the surgery went really well, all things considered. I've been able to resume a lot of walking and getting in some yoga too to try and reawaken my body. And still trying to read the tea leaves on what foods my body will tolerate or not...that's definitely been a game of roulette with some poorly placed bets included.

By far the best part of the surgery was a long break from chemo! But, alas, it was time to resume chemo yesterday. We were going to start it back up on May 19th, but, after huddling with all of our doctors, elected to move it to yesterday. That allowed some additional time to recover from surgery AND it allowed me to get some blood testing arranged by our functional/holistic doctor (never sure what title to use with her...she's got all the credentials you could ever want from the Western medicine world but also really focuses on what sits down deep in the roots of my health challenges...she's just amazing.)

Anyway, my blood sample was shipped off to the lab in Greece. I'm glad at least a part of me is getting a Grecian vacation during all this. We hope to have the results in about a week, which should offer some really useful data to help us map out a curated care experience unique to my cells and their needs. The goal, as always, is get rid of all the cancer AND build a body/immune system more capable of preventing disease. More to come on all that...

In the time off of surgery, I did experience an advancing neuropathy where my hands and feet have just increasingly gone numb. In my hands, it's mainly my fingertips, and the numbness continues to advance from just my toes to now much of my foot. It's hard to explain, but kinda feels like that moment soon after your foot has gone entirely asleep and then starts to get back the feeling as you get up and walk on it some.

Confirming what I found in my own research, my oncologist said that the neuropathy could be permanent or it could go away after a year of not being on chemo. There's no way to know, and very little you can do about it.

The idea of permanent (and possibly worsening) neuropathy has been a bit frightening. It's raised a lot of questions of what is best to get rid of cancer while also preserving a quality of life afterward. Right now the neuropathy is manageable for me, but were it to get worse, it doesn't feel too far off from some compromises I'm not sure I want to make.

Aside from lowering the dosage of the one drug that causes it (which we did do), the things that could help a little are B12 supplements and continuing to stay active which, in theory, can help remind those nerves how to function. At least that's my simple explanation of what I thought I heard (or wanted to hear??).

Active I can do. For me that's walking and continuing to play guitar. I've found it to be a little ironic that a couple of activities I love are when I notice the neuropathy most acutely AND the moments that could help stave off the neuropathy more. So maybe I should walk the neighborhood while playing guitar? Or maybe the ukulele would be a little more portable...

So I'm back at chemo as of yesterday, and we will continue forward with the plan until there's a need to adjust based on better/more information. Current plan is the remaining 4 cycles of this chemo (3 cycles after yesterday) and then look at maintenance chemo or other treatment options based on what we see in PET/CT scans and this blood work.

One good thing about resuming chemo was a chance to reconnect with a friend, Beverly, who I've gotten to know in the waiting room and infusion room. Beverly is getting treatment for stage 4 pancreatic cancer, and she is nothing short of remarkable.

There's a quality of conversation that happens in that place that gets quickly down to the things that matter the most. Huddle up some folks experiencing some gnarly cancers alongside some wonderful nurses, and there's just a lot of care and depth in the words shared with one another. As I've maybe alluded to before, there's just not really much space for the extraneous bullshit that might spin me up otherwise.

OK...about to go a little deep here. I know I've made at least one reference to Richard Rohr, but his writing and voice is often in my head. He sums up the "perrenial wisdom" that underlies most world religions in this way:

• There is a Divine Reality underneath and inherent in the world of things.

• There is in the human soul a natural capacity, similarity, and longing for this Divine Reality.

• The final goal of all existence is union with Divine Reality.

When I get the gift of sitting down with Beverly, while we are both getting loaded up with some heavy chemicals and both experiencing the depths of our vulnerability...it does feel like, if only for that relatively short time together, that we are tapping into the "real" together.

A wish I have for all of us traveling through this "world of things" is to find, pause and pay attention to, and savor those moments when we get tapped into that deep reality that I might just call love.

Sending all the love to you and yours. Thanks as always for the deep care you have shared with us. It means the world.

Much love,

Matt