Jason's Untimely Thoughts

Many have asked recently how Sarah is doing, so despite my continuing promises of no more updates until something changes, here’s an update.

We recently had another round of scans, both CT scans and Octreoscans, and then the visits with the corresponding doctors.  The scans continue to show either no change or positive change.  Some of the spots continue to get smaller while others appear to be stable.  Beyond the liver and specific lymph nodes, any time something “new” has popped up on a scan, it’s later been debunked.  No new spots, no growth, some shrinking.  All good.  And we simply can’t stress enough how fortunate we feel to have friends in town who can and gladly do help us decipher this stuff.

More detail, Sarah has been diagnosed as having “atypical carcinoid”.  The main feature that makes it “atypical” is that it grows faster than typical would, a diagnosis based on where Sarah’s carcinoid started, how it metastasized, and the tissue sample from that removed tumor.  However, it’s not behaving as a typical atypical carcinoid would.  Specifically, it’s not growing and has shrunk.

Based on the diagnosis, the standard treatment at this point should likely include chemotherapy.  In fact, the physician we saw in New York recommended a specific (eventually) combination treatment of two chemo drugs, to start immediately and last at least 4 months, potentially for years.  While not decided for certain, we don’t feel now is the time to start that treatment.  If the CT scans were showing something different, then maybe.   We’ll continue to monitor closely (more closely than every doctor we’ve visited recommends, with the exception of our local oncologist) and to investigate options.

One hope, among many, is that perhaps the situation has changed enough to make surgery an option on the lymph nodes, the liver, or in combination.  If we can get the disease limited to the liver, then that opens additional proven treatment options.  That’s where things stand as of today.  The decision on chemo hasn’t been made fully, but that’s how we’re leaning.

A common question when we’re discussing the situation with others is “How’s the football team going to be?”  We’re happy to report that another 14-0 season is in the works.  Tigers open the season in 10 days (6 days using Melissa Smith’s magic counting tricks) against Illinois in St. Louis for victory number one.  We have lodging arranged for 11 of those 14 games, with others in the family taking the bold lead and reserving hotel rooms in San Antonio for the Big 12 Championship game.

Adelaide and Jack have both gone back to school this week.  Adelaide’s in her third-year at CDC, or “Jack’s school” as he calls it.  JT has started there as well, going 2-days/week to “Adelaide’s school”, as she calls it.

That’s where we are.  Hope you’re well where you are.  Go Tigers.  Screw carcinoid.  Screw ku.

As I’m getting ready this morning, Adelaide comes into the bathroom asking “Have you ever heard of nose glowers?”  Um, no.

“They’d be little balls that you’d stick in your nose at nighttime,” she said, sticking her nose out one way and her butt the other.  “They’d glow, so when you were searching around for stuff you could see!  Wouldn’t that be a good idea?!”

Yeah, I say, we could call them ‘Rudolphs’ with your nose so bright.  “No, daddy, they’d be all different colors… yellow, and blue, and green, and purple.  Not just red.”

Just when I thought we were all set to be millionaires, she told me she was just teasing me.  Oh well, inspiration is sure to strike again soon.

I’d been wondering why I haven’t put any new pictures up on the site in a while… turns out it’s because there were a few hundred photos from throughout the summer on our little camera. Some of those have now made their way here.

Many have recently asked how Sarah’s doing. All is well, while we continue to investigate options. The physician we visited in NYC recommended some other treatments, which we’ve been discussing with Sarah’s local oncologist and researching on our own. As part of that, another friend of ours (who is a radiologist) was good enough to review all the CT scans with us looking over his shoulder (literally). Just making sure we knew what we knew. At the moment, no plans for any new or different treatments, but we’re still looking around some. There is another round of scans scheduled for late August, so that could certainly influence a decision. Will probably due a full-blown update then.

Football season is coming up (hooray!). Sarah is continuing her history of shooting lots for them… some paid and some not. We’re interested in doing more of it paid, if you know anyone in the athletic department tell them to pay her.

It’s August and it’s hot. Around 100 degrees every day this week. Construction going on at work (expansion), so A/C is sketchy. That makes it fun. Heat index is for sissies, but it is hot.