Well, it seems like it’s been a very long time since I did an update. As usual, no news is good news. I started composing this glorious update quite awhile back, but the process of getting things together this time has taken awhile. I’ve made numerous edits, so please bear with me as I may have missed some past and present tenses.

I took a little jaunt down to Tennessee at the end of January to get “another opinion”. I visited Sarah Cannon in Nashville (Tennessee Oncology). I’m just trying to keep all of my options open. If treatment here isn’t an option in future, I would consider seeking alternative treatments there or wherever suits me best. They have different clinical trial options and create some personalized medicines. Pretty interesting stuff, but as I said, it was just a visit (and an excuse to bring back some delicious beer).

I had scans at the end of February and another Guardant360 blood biopsy. My previous scans and blood biopsy were in early January. We were watching a new mutation that had popped up in my blood work in January. My February MRI/CT scan results came back and looked good. No evidence of metastatic cancer. Normally, this is exciting and great news, but I have learned not to celebrate too early (opposite of my life before cancer-LOL). My scans are now just a “piece” of the puzzle. When paired with my other blood work, mainly this Guardant360 blood biopsy test, we usually have a better picture going forward.

Now, for the “geek” in you, I’m adding a visual of what these Guardant360 results look like (minimal-the report is such longer and explains a lot more). You can see that currently I have an APC R876 mutation at a whopping 0.2%. Trust me it’s real, even at 0.2%. It also shows mutations detected all the way back to August 2015. I have had another one drawn since, just this past week (April 6th). Stay tuned.

My Guardant results showed that the “new” mutation that was detected in my blood in January (TP53 R248Q) was now gone (likely a nonsense mutation, we’ll call it). However, an old friend (APC R876) was picked up at 0.2% (that’s how sensitive this test is). This is one of my four original mutations from when I was diagnosed way back in 2015. This has happened in past (aka spring/summer 2020 and summer 2018) and indicates that things are likely requiring some attention again.

This mutation “finding” prompted us to schedule a PET scan mid March. The PET showed a lymph node (or as some say lymph NOID-you know who you are) in the liver area that contains disease. Luckily, I was scheduled to have my bile duct stent replaced (ERCP) a few days after this scan and if you can believe it, the lymph node could be biopsied endoscopically while they were changing my stent. That’s some fancy shit or luck. It was biopsied simply to confirm it is in fact cancer for future treatment possibilities, insurance, etc.. Results came back a day or so later, it is in fact consistent with my original tumor mutation. Poorly differentiated adenocarcinoma… what a mouthful. More than a mouthful is a waste proves true again, here? Moral of the story, this will need to be addressed.

I had to wait to hear what the Tumor Board at Siteman/Barnes/WashU would suggest and ultimately decide. They met at the beginning of last week (March 29th). Patience is a pain in the ass, isn’t that the saying?

The Tumor Board discussed if surgery was an option (Dr. Hawkins), if SBRT (radiation therapy-Dr. Henke) is a better option or if just changing my chemo back to something stronger could zap it (since I’ve just been on maintenance chemo-clearly it’s not “maintaining” jack sh*t). Having survived over 6 years now, my medical history is not the easiest thing to discuss. They consider all things done in the past and of course realize that my anatomy has changed significantly, with having had multiple surgeries (and now lots of scar tissue). The “lay of the land” is not like it used to be. I think it’s tricky to look at my scans now and they can’t always be perfect each time if something isn’t standing out or significantly larger by comparison to past scans, hence why sometimes it takes a little digging to get to the bottom of these things.

I’ve learned treating cancer is not always cut and dry. There is no right and wrong at times, especially when dealing with my cancer. There are options, and then trying to figure out what is optimal. The grey areas are rather large, like my ass (thanks covid). What works for me or someone else may not for others. It’s a process… and you have to navigate it very carefully. I’m trying not to limit myself, but always trying to be proactive and as involved in decision making as I can be, but always deflecting to the specialists I so greatly respect and trust.

Now, with all of that said, I finally have a direction moving forward. Apparently, this little lymph node is very close to where we did radiation therapy last year (within 1-2cm I think she said). It can be tricky to treat an area so close to where they treated in past. From a surgical view, this area has also had a duct reconstructed twice and has a lot of scar tissue surrounding it and again, the anatomy being different poses some added difficulty and increases risks of complications or nicking things or bleeding. You just never know. We have discussed these two options extensively and have decided to go UNDER THE KNIFE. Surgery is expected in the next couple of weeks, so should happen in April sometime. I fully trust these two in making this decision. Neither one is easy, but we figure to try this and if we run into any issues then we can fall back on the other. This surgery will be more difficult than the last one, not as bad as my big ones in years past. Just re-opening another scar… No big deal. LOL.

I hope everyone is surviving (just keep on swimming). This pandemic has not been easy. I’m grateful for friends, family and Kim for being sure I’m taken care of and surrounded with a safe environment at all times. I will say, I sure feel less silly wearing a mask now in public settings, sorry everyone. When I was the only one, I felt like such a spectacle. LOL.

There comes a time to say goodbye and the time is now.

Go On Git!

Go On Git diseased lymph node

Are you a node or a noid?

I find you A NOID-ing

Be gone by way of surgery April 23rd

You pesky little turd

Go On Git Little Shit!

Cheers!!