And the other shoe drops

Remember how in my last post I said I get anxious when I go too long between updates because I’m always waiting for the other shoe to drop? Well, it may have just dropped.
 
The part I left out of the last update is that I was already waiting for test results when I wrote it. We weren’t actually expecting anything dramatic, but I wanted to get the big catch up post out of the way just in case things went sideways. It’s still unclear exactly how dramatic things are about to get, but we’ve definitely moved from “it’s probably nothing” to “it’s definitely something, but we don’t know what yet.” So I guess it’s time for another update.
 
A few weeks ago I had a regularly scheduled transplant clinic appointment, during which I got a chest x-ray as I always do. They saw something a little off on the chest x-ray, and reassured me that it was probably nothing, but ordered a CT scan just to double check. They actually downplayed it so much that I completely forgot about it until I looked at my calendar the night before and was like “CT scan? What CT scan? Why am I getting a CT scan again??” So I looked up the chest x-ray report in my patient portal, which was a mistake, because it mentioned assessing for post-transplant lymphoproliferative disorder (aka PTLD), a type of cancer specific to transplant patients thanks to the anti-rejection meds. Katherine and I mostly managed to convince ourselves that it was probably nothing and stayed calm over the weekend, but that ended abruptly around 4pm on Monday when the CT scan results hit my patient portal and showed a nodule on my lung. In a weirdly fortuitous twist, having the abscess last winter ended up being helpful, because we had multiple CT scans of my chest to compare back to.  Unfortunately, those showed that the nodule has been there for at least a year and has approximately doubled in size during that time. Since it was late in the day my transplant team didn’t get a chance to look at the results right away, so we had to sit for almost 24 hours looking up words like “left pleural-based nodule of uncertain etiology” and “could reflect a solitary fibrous tumor or an unusual manifestation of PTLD.” It wasn’t exactly a good time.
 
I finally spoke to my team on Tuesday afternoon, and they were quick to reassure me that it does NOT look like cancer to them. But I do have a bit of a history of medical oddities, so it would be very on brand for me to end up with something atypical. It could also be a fibrous tumor, which is just a benign growth, or some sort of infection. We won’t know for sure until we get a biopsy. The first step is getting a PET scan to get a better look at whatever-it-is and also check if there are any other mystery growths we should be checking out. After that they’re probably going to want a bronchoscopy to get a general look at my lungs and check for infections, and they might even be able to do the biopsy during the bronch. If they can’t, we’ll have to schedule a separate procedure for that. So it’s going to be a bit until we can get some definitive answers.
 
On the plus side, Penn Cherry Hill amazingly had an opening tomorrow morning for the PET scan. I don’t know how long it takes to get results, but I’m REALLY hoping they come through in time for my team to review them before the weekend so we can get to work on scheduling the next procedure(s). But I also know I might have to wait until next week for that.
 
I had debated whether to say something now or wait until I had more answers, but Katherine was adamant that I needed to post right away and get the prayer chain activated. I will gratefully accept any and all prayers and good vibes for a good outcome. My full Hebrew name is Keren Eliana bas Sarah.
 
Here’s hoping this all turns out to be a big nothingburger and a whole lot of unnecessary fussing!!