I woke up this morning to a thunderstorm. I actually find thunderstorms out east pretty comforting. They don’t have the same fury that they do in the midwest, like they’re trying to tear the sky open and sweep you away with sheets of rain. Here in New England, it’s more like seeing a gaggle of old people on Harleys. It’s loud, but you know no one’s going to be splitting lanes or popping wheelies in front of you. A bit like our mountains, most of the sharp edges are missing. Anyway it’s been a minute since I’ve updated yinz, so let me jump right in and say the news is mixed. I had my first check-in CT scan to see if my chemo was doing what it was supposed to. CT scans are surprisingly quick and easy compared to pet scans. Just a few quick back and forths and then they microwave your insides for a few seconds. I’ve never had more sympathy for instant noodles. The results were less fun. The Folfox (my first chemo “line,” or cocktail) was shrinking the large tumors in my liver and the original culprit by my stomach/esophagus* but nodes in my lungs and peritoneum appeared to still be growing. Thankfully, folfox is far from the only treatment option, and we’ve pivoted to a drug regimen involving either docetaxel or paclitaxel, (they started me on one and switched me to the other for my second infusion, but they are functionally the same. This is the upper limit of my knowledge, I rely on my big-brained wife to spell them correctly.) I am also still on Nivolumab immunotherapy, which has been part of my treatment from the start.

 

What I can tell you with certainty is that the side effects and treatment schedule are different. So first the bad news: my beard started falling out really quickly. Great news for local birds who may be nesting, but startling for my wife, who is also nesting more these days, but had never seen my chin before. Upon its reveal, she determined that I’m still as beautiful as a dun mare. The hair on top of my head seems to be following at a slower, but still accelerated pace. I’m looking forward to wig shopping though, so that’s all right. There is some loss of taste with this treatment, but nothing too wild yet. It’s probably ok that my eating is less wild, I was up 5 pounds at my last weigh in, which is generally a good thing at this stage.

 

I’m also having mild mouth sores and dry lips, but saline rinses and lip balm are doing their sacred duties there. The good news is my neuropathy is totally gone, just in time for warm weather anyway, but at least now I can hold a milkshake without discomfort. My swallowing seems unaffected and my fatigue seems to be largely the same; present but not crippling. 

 

Also, my treatments on this line are more infrequent. I’m on an every-three-week infusion schedule instead of every-two. That’s actually pretty nice, apart from the immediate chaos that change causes in my schedule. (The medical staff does not always signpost the information most relevant to civilians, such as “which days is this happening on now?”) The best part of this new cocktail though is that I don’t have to take home a pump. Which means no follow up visits to be detubed, and no need for a hazmat kit at my house anymore. Amy and I had a really spectacular passover in Washington DC which I’m planning on writing a separate post for. Suffice it to say it was very much the good vanilla. 

Small miracles, but they still feel big, like our thunderstorms. 

 

Until next time, stay gorgeous like a horse is. Love from new england.

 

*it’s actually quite difficult to say with clinical certainty that esophageal tumors are growing or shrinking due to the exceedingly floppy foldy and stretchy nature of the stomach and esophagus, but I’m told that the ability to continue to swallow is a good sign. I personally find it extremely convenient.