Day 1, also day 30

Today is the one month anniversary of learning that I have cancer. Happy Anniversary to me. I expect that – should I reach them – future milestones will feel more substantive, celebratory, forward-looking, and bell-ringing. But this one is a good chance to reflect on what a month it has been:

• Likely RCC diagnosed

• Letting Amy know

• Letting my Mom and my sister know

• Lung Biopsy

• Letting friends and  family know

• Letting work know

• An outpouring of love and support from friends, family, and work

• Brain MRI

• Nuclear bone scan

• Complete diagnosis and prognosis

• Multiple consultations

• Symptoms - both recognition of existing and advancement - night sweats, fatigue, pressure on the kidney, the coughing

• Coughing up blood from the lung biopsy and not coughing up blood and then coughing up blood again

• A treatment plan

• Treatment

It's been a month. It seemed like there was so much waiting during the month, but it's also been so fast. An emotional roller coaster. And now things will slow down and get somewhat routine. With more waiting. More highs and lows. More emotion. Onward.

Treatment started yesterday. We started the day with a hike with Cleo through the Greenbelt which is near our house. Cleo struggled a bit with the humidity, but was happy to get into the woods. It was nice to get out and into nature. From there, it was a long day at the Doctor's office, but everything went smoothly. It was about 4 hours on site, with a lot of waiting between sessions:

• Benefits and payment discussion: I have good insurance, so the ~$250K+ for the first round of treatments that have been ordered will only cost us an additional $3700 out of pocket as I'll have hit my maximum deductible. Yippee and totally fine.

• Blood work: I've gotten good at the small talk. I've learned that veins develop scar tissue. I've learned to switch arms. I've asked if we can do the leg next. I've been laughed at when I ask to do the leg next. I've dropped the subject…but I do have veins in my legs, and I will ask again next time.

• Consultation with the Nurse Practitioner: Dr. Yorio is on vacation in Japan, so I won't see him again until next session which is okay. I asked about:

  • Side effects: Everyone's different, but my immune system will be triggered and that will ramp up with each dosage. Colitis is the one mentioned most often. Rashes, fatigue as well. Those appear to be the most likely. Serious and less likely stuff would be if the treatment starts to impact liver function, but that should show up with future bloodwork, likely before it’s serious. I think other stuff, like fever and coughing are possible, but less likely, and not too serious.

  • Diet: A mediterranean diet is recommended. Focus on protein and fiber.

  • Exercise: Listen to my body, but staying strong and fit is important.

  • Alcohol consumption: It's a carcinogen and I should eliminate or significantly reduce. While it won't interact with the medicine, it'll stress the body in other ways, and put demands on my liver, which will potentially be impacted by the medicine. I knew that was going to be the advice, and have been alcohol free since Saturday. Plan is to eliminate completely, though I may cheat with a bit of wine when we're on our trip.

  • Over the Counter Meds: Cough medicine is okay. Tylenol instead of NSAIDS (again, liver).

• The Immunotherapy: It was both weird and sort of what I expected. The room was bigger. It was 4 sections, each with 10 chairs. Capacity for 40 cancer patients, and while it wasn't full, it was busy. Everyone there was getting some sort of treatment. Everyone there had cancer and some of the people were clearly not doing well. I had a warm blanket. The chair had both massaging and warming functions. Each of the two treatments (Opdivo and Yervoy) took 30 minutes, with a brief gap in between. Both intravenous. My right arm got shot up yesterday. In three weeks, I'll give them the left. Or maybe a leg.

Amy was with me the entire day. We talked and we didn't talk. We did crossword puzzles together. We saw some of Lindsey Graham's funeral on the TV in the lobby, without sound. I'm not sure if Sean Hannity mentioned all of the countries Lindsey encouraged bombing or not as part of his eulogy. We both got ear acupuncture. We ate snacks they provided because treatment overlapped with lunchtime. The snacks were not on the mediterranean diet.

It was nice to have Amy by my side.

From here, we do this every three weeks. I think for the next 12 weeks, but it might be longer or shorter or adjusted based on how I'm responding. My understanding is that there won't be another CT scan until 12 weeks and that may be inconclusive on progress.  Apparently, my T-cells could be so fired up that they are attaching to the tumors, making them actually look larger. Or everything could shrink a little. Or a lot. Or I could be non responsive. Or the side effects could be worse than I can tolerate and we need to look at something else. Or, or, or, or….

Looking forward to the next consultation with Dr. Yorio in three weeks. 

How I’m feeling

Last night I was exhausted, achy, and coughing a lot. I think I was more mentally exhausted than anything. Again, it's been quite a month. I was achy mostly from the combination of flights, long car rides, golf, and the massage I got on Monday. I got the massage because I was achy and she really got into my shoulders. The coughing has been getting a little worse, but I've got some prescribed meds and have confirmed that OTC cough syrup is okay. Should be manageable.

Last night I had one of the worst bouts of night sweats that I've had. I feel like I'm going through menopause. It's tough to manage – if we cool the room before bed and I wake up soaked, it's freezing. I’ve tried bamboo and other moisture-wicking shirts. Amy bought bamboo sheets too. Last night I went through three shirts and had to place a beach towel under me. It happens during the early stages of sleep and then stops. It's my immune system responding to something. 

And today, I feel good. I got to the gym this morning, did a light workout and took advantage of their massage beds. It's a classy joint.

What I'm thankful for

Amy and I have this great routine each morning where we do a lot of puzzles. It's almost too much, but I wouldn't change a thing. Inevitably, the dog or cat wakes us up and one of us (usually Amy) feeds the pets and goes downstairs to get us coffee. 

We then drink the coffee in bed and gently ease into the morning. From there, we do the NYT Spelling Bee (we compete to get to Genius), the Crossword puzzle (we work together and we're amazing), Apple's Emoji game (we solve it together and it's like learning another language), the New Yorker's Catalogues (you need to sort a random list in order), and then Atlas (a map game where you get five guesses to identify the country based on shape – they tell you the distance based on each guess). It's too much and yet sort of not enough.

It's a solid hour in bed, but it's nice and gets the brain working. It's intimate. The whole family, including Cleo and Thea, are on the bed. We're afforded this time because the pets wake us up early, often just before dawn. 

It's my favorite time of each day.

A Memory

Amy and I did this amazing trip to the Big Bend area of Texas in October, 2019. It was a testament to the vastness of Texas. There was a long drive on I-10 where you see the desertscape covered with ranches, sometimes cattle, sometimes oil wells. Hues of clay and cacti and cottonwood trees all around. It's monotonous, but at the same time, beautiful. It's a hard life out there. It's why movies like "No Country for Old Men" or "There will be Blood" just grab you – the hardness of the environment is a major character.

And then you get to the Big Bend area in the Chihuahuan Desert, that overlaps the border with Mexico. It's called "Big Bend" because it's where the big curve made by the Rio Grande shapes the border between Southwestern Texas and Mexico. 

The trip was broken into three parts:

Terlingua: This place should not exist. There's a burnt out graveyard in town that tells you, without telling you, that people die young in Terlingua. Everyone's skin is torched, but there is a community. We found some good live music, some desert dogs, a drinking goat, and a potato chip that could cover your head. We stayed at this lovely little Airbnb that had a firepit where we would sit out at by night and look at the vastness of the stars, in a dark sky region. We did an evening trip out to an observatory where we saw Jupiter and Saturn through a telescope. 

Big Bend National and State Parks: Multiple hikes each day with long drives in between. It turns out Texas has mountains and vast chasms with rivers. Extreme heat in some parts, contrasted with the coolness at elevation. Hard, but beautiful desertscape all around. We needed to make sure we had enough water. I stepped on a cactus spike that pierced through my shoe. We crossed the Rio Grande and found a large rock that we declared the nation of "SteinHansen". The idea of a border wall felt absurd. To pass the time, we made up stories involving the travels of a pebble that was stuck in my shoe and another one with a button that needed to be constantly pressed, from generation to generation. The days were full and hard, and at night we drank the native spirit, Sotol, at the lodge.

Marfa: A truly bizarre desert artist's town that also shouldn't exist. The epic movie "Giant" with James Dean, Liz Taylor, and Rock Hudson was filmed in Marfa. It's good. The above mentioned "No Country for Old Men" and "There Will Be Blood" used Marfa as a home base. Art galleries are everywhere. Good restaurants. We stayed at a RV Park called "El Cosmico" where we rented a pimped out RV, showering in the posh, but communal showers on the grounds. There's a Prada store there that's not a Prada store. It's a fake Prada store. It's art. Amy posed in front if it at the same time a bunch of bikers were there. Only in Marfa.

Five stars.  It's a hard place to get to, but totally worth it, no matter where you're coming from.

What I'm looking forward to

A nice and relaxing weekend at home this weekend. The agenda includes a short walk to our local Alamo Drafthouse to see the "Odyssey" and that's it. Beyond that, some exercise, some pool time, cooking up something good, watching too much TV.    

Something I recommend

"Lotta Sea Lice" by Kurt Vile and Courtney Barnett. I've been a fan of both of their solo work, and think that this collaboration is the best thing either of them have been a part of. If you're familiar with one of them but not the other, check this out. We keep going back to it. 

What I ate

Last night, after getting home from the treatments, I made Samin Nosrat's "Spatchcocked Chicken". I got the recipe out of her excellent cookbook/tome on all things food, called "Salt Fat Acid Heat", but it's also provided via NYT Cooking in the link below. Basically, you cut the backbone out of the chicken (good bone cutting shears are ideal, but I've done it with the shitty scissors you get at a vacation rental). This helps spread the surface area around for more even cooking.  

From there, I salt it and let it cure for up to 24 hours in the fridge. That helps get the skin super crispy. Then, I pan fry it with some garlic and thyme, skin side down for ~5 minutes. Then flip it, and stick in in the oven for 45 minutes, turning it once. I use a cast iron pan, but any oven-safe pan will do.

Once you take it out of the oven, let it rest for 10 minutes, and that's it. You get better at carving a chicken over time. Amy got me this amazing left-handed chicken carving knife that helps get things close to the bone, but use what you have.

I'll also make a pan sauce to pour over top of it, but it's not necessary. Last night, I did a veal and duck demiglace which sounds more difficult than it is. Serve it with roasted root vegetables, perhaps adding a chopped poblano for a bit of a kick.

https://cooking.nytimes.com/recipes/1024948-spatchcock-roast-chicken

Random thought

I feel like I've gone a little long here today, so I'll try to be quick. Every year I try to grow tomatoes, peppers, and herbs in our backyard garden. With middling success. This year has been particularly poor, despite all of our rain. The plants grow but they don't bear fruit. Except for the banana peppers, which I don't actually do anything with. We got some jalapenos and some serranoes, but not much. We have a giant habanero plant that bears no habanero. The tomato plants are huge but they have no tomatoes. The lemon tree is sort of growing lemons but they seem to have stopped growing. I think we don't get enough sunlight in our backyard as the bamboo and other trees continue to grow within and beyond our fenceline.

I will try again next year. Maybe I’ll completely refresh the soil. Maybe.