I hadn’t posted an update in a while because I’ve been a bit overwhelmed with basic survival lately. Between travel, endless appointments, and how fast things keep changing I haven’t even been sure what to say. In early December, my quarterly CT scan showed one spot of suspected retroperitoneal soft tissue metastasis that was confirmed with a biopsy a week later.

I left my campground in Virginia Beach to go to Wilmington for the holidays thinking I was up against a minor speed bump and just a few weeks of delay to my grand winter plans. Right after Christmas, we made our third December trip to Duke for planning scans for radiation therapy and then I ended the year with my first ED visit since the summer for IV fluids. I’ve been struggling with but managing fatigue and long term surgical side effects all along and then recently started to notice increasing nonspecific symptoms and a growing sense that something was off.

On the weekend before I started radiation (January 8th) I had an ambulance ride and unexpected 3-night hospital stay at Duke triggered by a kidney stone obstructing one of my ureters, causing sudden intense pain. A CT scan revealed that the other side was also obstructed by a suspected (but not visible) tumor pushing on it, so I was suddenly down to no draining kidneys plus a second (visible) soft tissue tumor that didn’t show up on the scan the month before. I earned an early Sunday morning procedure to get ureteral stents placed on both sides after a long restless night in the ED feeling like my whole body was shutting down (while my since retrieved asshole cat was exploring the RV park and woods).

I got through five days of radiation with some extra IV fluid support at the cancer cancer after getting discharged from the hospital and then for good measure I had one more ED visit for IV fluids back in Wilmington before getting setup with daily home infusions to keep me hydrated enough to avoid having to go anywhere. With the extra fluids help plus a course of antibiotics and assorted other medications I’ve started feeling noticeably better even though my blood pressure is still running lower than my normal and I don’t have much energy. Fortunately my actual kidneys appear to be fine and I’m starting to get my body back in equilibrium.

Last week it was back to Duke for another procedure to get the kidney stone broken up and one stent removed and replaced with a temporary one that I got to remove myself for my birthday. I’m stuck with the other one and associated discomfort for as long as it’s obstructed. Wednesday it’s back up to Duke to get assessed for a fancy wheelchair (I discontinued my neuropathy medicine back in December so I’d have less side effects to juggle) and then another CT scan and oncologist visit on Thursday to reassess where I’ve got known tumors that still need to be dealt with. The new visible one is very close to my (already shortened) colon and likely isn’t a good candidate for radiation due to risk of intolerable GI side effects and regular systemic chemotherapy doesn’t work well in the abdominal cavity.

The next step is a consult with my surgeon at UPMC tentatively scheduled for the end of next week to determine if I’m operable and then get another surgery on the books. We’re still working on records transfers and logistics. I don’t expect it to be quite as bad as last year because this time it appears it’s just chunks of abdominal wall instead of more organs that need to be taken out, but Mom and I will end up in Pittsburgh for a few weeks again.

It’s not exactly the snowy winter road trip I’d been planning and prepping for, so once I recover I’ll be looking for a good late spring skiing destination to head to with the RV to make up for not getting to spend the season in Park City. In the meantime I’ll be parked in the driveway in Wilmington suckering my dad into finishing my RV upgrade projects, training Kelly to pull my wheelchair, and trying to focus on writing my dissertation (which is probably what I’m supposed to be doing instead of skiing anyway).

The amount of support I have from family, friends, colleagues, acquaintances, and even strangers makes all the difference in the world in being able to recognize and appreciate the bright spots amidst the darkness. Simple check-ins and shout-outs remind me that still I have a lot to be thankful for and help me keep an upbeat attitude in the face of harsh reality and an enormous amount of uncertainty. I’ve still got plenty of fight left in me and all I can do is keep my faith and get through one day at a time.

In the coming weeks we’ll be back to posting regular updates. As always, thank you for the thoughts and prayers!