Down the diagnostic rabbit hole
We met with Dr. Yorio on Monday and reconfirmed that I have stage 4 Renal Cell Carcinoma. He indicated that it was in all likelihood incurable, but treatable, pending the results of some additional tests. 6 year overall survival rates are at 42%, but he said that there was a decent chance (50%+) that I would survive with this due to my age and otherwise good health, depending on how my body responds to treatments, and the results of some additional tests.
Recent developments with targeted immunotherapy have been very impactful to RCC patients, and additional time will hopefully only compound these improvements. The best hope is that the treatments eliminate the tumors in my lungs and shrink the tumor on my left kidney so that surgical removal of some or all of the kidney can become an option. Then, a lifetime of monitoring. Likelier is that we shrink everything, and continue to treat it, and hope that treatments continue to advance.
We are evaluating a clinical trial vs. the standard care protocol. Again, having Amy in my corner to read these things and ask the right questions is proving invaluable. We have a virtual follow up session with Dr. Yorio tomorrow morning.
But I write this at a Starbucks in Round Rock, about 40 minutes from home, between the brain MRI I just completed, and the full body bone scan I have scheduled for 2 PM this afternoon. It's pouring rain, but when that lets up, Amy and I plan to hit the outlet mall and spend money on stuff we don't need.
Up until today, I viewed these exams to be routine and intended to rule out that the cancer hasn't spread elsewhere. I have no symptoms indicating that it's spread beyond the kidney and the lungs and expect that to be the case, but anxiety is starting to swirl. When you're in the electronic sound machine of a brain MRI for 20 minutes, with nothing but your thoughts and a warm blanket, your mind starts to drift. It turns out, my great uncle (my Mom's Dad's brother) died at the age of 52 of brain cancer. I never knew him, and didn't know that's what he died of, until I was talking to my Mom about cancer history right after I was diagnosed. It sent me down an unpleasant rabbit hole of wondering if he actually had RCC that spread to the brain, or if it was just brain cancer.
Is this genetic, and if so, is how it spreads genetic too? Again, rabbit holes.
Anyway, anyone that's familiar with Wilford Brimley knows that 52 years old in the 1960s is equivalent to 70 years old today. And again, I don't have any symptoms. No headaches, no seizures, no fainting spells. But this is more Tom Petty stuff. Waiting is the hardest part.
So up next is Dr. Yorio tomorrow, followed hopefully by a treatment plan so that we can really start fighting back.
How I’m feeling
Reflective. A bit anxious. Bandaged on both arms from intravenous needle points (it's fine, just….there). I've got some sort of contrast dye working its way through my bones, but I can't tell. I’m coughing up very tiny amounts of blood, which had stopped, but started again. Not concerning, except….geez. Will talk to Dr. Yorio about that tomorrow. Otherwise, physically fine.
What I'm thankful for
Trevor, Drifter, Ryguy, and Rook. We gamble small amounts of money, mostly on football, but also on other sports (I've been cleaning up through the World Cup). It is a lively and active text chain that serves as a great distraction. It's all very funny and light.
Trevor is also a great and close friend who I was common law married to when he was my roommate for 7+ years in Wyndmoor and Glenside. I let that crew know yesterday, and indicated that the one thing I needed from them was a commitment to expanding the things we gamble on this football season to include a guillotine league. I've been pushing for it for a couple of years, and dammit, cancer is a card you can play to get what you want.
A Memory
Amy and I have been on a lot of boat trips together, some amazing, and some much less so. A near exhaustive list, with ratings:
***Tulum: A fishing trip where we caught something that looked like a marlin, but that I think was something else.
***Key West: A big group snorkeling trip as part of Melanie and Brian's wedding, where Amy was a touch hungover and fed some chum to the sea. Fun time with good snorkeling.
*****Trancoso, Brazil: During our honeymoon, a private boat trip to an island for an amazing seaside lunch with hammocks.
*****Pantanal, Brazil: Daily trips on a small craft through the Pantanal, finding jaguars, giant river otters, caimans, capybaras and a bunch of other wildlife. It’s there that Amy gave me the nickname of Jabiru. They’re basically these really lanky storks. Huge wingspan. Always have fish in their gullets…
*Cartegena, Colombia: Death boat to Gas Island – a trip out to the Santa Rosa islands with snorkeling and far too many other people. The snorkeling was downright dangerous, with heavy currents (and no fish), and the boat got stuck on the way back due to too much weight.
**Costa Rica: Another fishing trip, where orders were barked at us and everything was very gas fumey. Highlight was catching a mackerel that our hotel restaurant expertly cooked up two ways for us.
*****Vieques, Puerto Rico: A trip out to the neighboring island, and some snorkeling, with our captain and his wife being great company. Followed the next day by Amy and I driving our rental jeep to a secluded beach, only for a small yacht to moor near us and ply us with champagne and tapas.
*****Phuket, Thailand: Two days of a speed boat around countless islands. The movie stuff where you see giant rocks jutting out of the ocean. Amazing water, great crew, monkeys, weird amphibious creatures, lessons in island biogeography, and some great food.
****Cabo, Mexico: Mediocre private boat, but great company with Louis and Ashley. We went blue whale watching and the whales showed up in force.
What I'm looking forward to
I think I've already mentioned it, but we have a big vacation scheduled for September to Italy and Croatia. The Croatia part involves a day with a speed boat taking us from island to island, before we settle in for three days with Hvar as a home base. I've been thinking a lot about this trip, and will be prioritizing, to the degree possible, my treatment schedule around it.
Something I recommend
"Song of the Dodo" by David Quammen. Really, anything by David Quammen, but this was one of the best non fiction books I've ever read. It's about island biogeography in an age of extinction. Why horses get small and mice get big on islands. How the introduction of a new species can decimate the biodiversity. How we're creating artificial islands throughout our continents with urban sprawl.
He's written a lot for National Geographic and Outside magazine and is uniquely adept at combining the adventure with the science in a really accessible and entertaining way.
What I ate
On Sunday we made Kogi short rib tacos. It's from Roy Choi's Masterclass and involves making a bunch of mother sauces. It's sort of Korean Mexican fusion. It's basically a shit-ton of scallions, root ends and all. It starts with the Kalbi marinade which involves scallions, kiwis, soy sauce, mirin, OJ, onions, garlic and sesame oil. You mix that all together and then marinate Flanken cut short ribs in it for several hours. From there, you make a Kogi Vinaigrette, some salsa verde, and a scallion slaw. I'll spare everyone the recipes on this one. It's time consuming, but not too challenging. Message me if you want the full recipe.
We served it with grilled Korean-Mexican Street corn. We may have invented this mash up and it was good
Random thought
There's this dichotomy to communicating with friends these days that is both great and terrible. I'm in touch, almost daily, with the group of guys I mentioned in a prior post (Dave, Brendan, Josh, Carl). We text on a group chat, make each other laugh, reference things that we all get. Very normal and very unique to us. But we rarely talk on the phone. The text chain has replaced that.
Over the last couple of days, I've spoken to all but one of them, letting them know about my condition. It's been really nice to hear their voices and see how they're doing. Point is, the texting part is great too, but it's come at the expense of picking up the phone, and I want to pick up the phone more often.
