The tortoise and the shooting stars

October 17, 2022

I'll get over the tortoise thing eventually, but today's not the day.

I had an interstitial treatment to my liver today, and was positioned in a way that I could actually watch it all on the ultrasound. I wish I had it on video, it was so freakin' cool. First step, lidocaine. Second step, inject photosensitizer directly into the liver and tumors. The photosensitizer looks like shooting stars across the screen. A whole universe of them. A whole lot of wishes and I didn't miss a single one. Third, he showed me a (rather substantial *gulp*) needle against the computer screen to show me how he was going to place it to thread the fiber optic through--fairly superficially because then the laser could treat the entire area of shooting stars. Too deep would basically black out anything that the end of the needle had passed. The laser intensity and duration has all been more this trip. Nothing has changed in terms of the therapies, it's just all...more. It's very cool and also slightly mysterious still to me that bagel bite is reacting, too, even though nobody's poked at it for quite a long time now.

Next steps have been decided! There was a chance of doing the microwave ablation therapy this week, but it wasn't to be. There's what the schedule presents and there's what works with the schedule. Sometimes they're one and the same, but this time, we're going home on Wednesday and then coming back for "surgery" in the beginning of November when all things will feel a little better packaged. (We've all been calling it surgery, I think mostly as a way of differentiating it from all of the other things, though we need to find a new name because "surgery" makes me cringe a little (a lot) still because of the huge 2019 surgery. Suggestions welcome.) This trip has definitely been more mentally taxing than any of the others, so having a little break at home, then coming back to it fresh feels like the best choice.

I had a glimmer at the beginning of this whole story in 2019 that maybe that surgery would also be the end and that it would register as a weird blip that we talk about sometimes. Alas, no. The approach I've taken since then is definitely a tortoise peeling layers of an onion (told you I wasn't going to give it up yet). It's playing the long game without knowing if the game will be long. I don't think there's a way to prepare anyone for the time or costs involved because no one can know at the beginning what it will ultimately be. You kind of start to ponder (not in a dark way, but in a logistical way) what the value of a life is.

The actual numbers? It's somewhat of an incomplete picture because I only have the invoice for the original trip at the beginning of August. I feel like I've just opened a tab with the clinic. We're close like that. The initial trip at the beginning of August came in just south of $30,000. The short 3 day trip and this last week and a half are TBD on a piece of paper, but expected to bring the total near to $50,000. The we're-not-calling-it-surgery is estimated to be $13,000-$15,000, plus the remainder of the week of follow up therapies at the clinic to make sure those dead cells find their way out. I've had the luck to talk to all of the doctors individually and they all answer my questions in the same way. I'm an excellent candidate for microwave ablation, and they expect to see complete remission. There's a small chance I may need a secondary follow up not-surgery, but that will be significantly smaller a task. They're careful about promises, of course, but this confidence gives me confidence. Follow up imaging can be done either in Mexico or in the US, likely in January or February, so that cost depends on where we decide to do the MRI.

I can't say I'm 100% excited about the not-a-surgery, and when I heard the cost, I thought, "shit, that's a lot on top of the a lot we've already done" But there's a very, very good chance this will be curative...so, the outcome, I'm incredibly excited for, and the thought of getting to be home for at least 3 months without any poking, lasering, or worst of all, lidocaine, as I work my way towards being cancer-free makes my heart very happy.

I'm incredibly lucky to have my family, my partner, and my friends that have made this whole journey with me and made it incredibly easy on my body, spirit, and soul. I know I'm in the right place of the world and with the right people that I can focus on healing, but the costs, especially now with not-a-surgery added, are getting top shelf attention time in my thoughts. Going off grid to blaze a trail turns out to be the best way to heal and one I absolutely recommend, but also is becoming very expensive, as it's all out of pocket. It's a chosen path, but also the only path for me if living is the goal. Leannda started a GoFundMe to help off set medical costs with the hope that our new cancer-free beginning is just around the corner--but at tortoise speed because let's not get crazy.

https://www.gofundme.com/f/9tqu9d-emilys-healing-journey

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