Sunday, November 23, 2025

I don't have cancer!!!

It’s official: I DON’T have cancer!!! My transplant doctor told me Friday afternoon that cancer is now off the table, and Nodsferatu is an abscess! Which is still problematic and needs to be dealt with, but is WAY better than cancer!!!
 
Right now they don’t want to go in and remove it surgically, because they’re afraid of popping it and spreading the infection. The current plan is to drain it and slam it with a long course of IV antibiotics. I assume that I may have a drain in place for some time after the procedure to make sure it empties completely, but that wasn’t actually discussed yet. The procedure also hasn’t been scheduled, but that’s to be expected since they only settled on this plan Friday afternoon. Hopefully I’ll hear from someone early in the week to schedule a date.
 
Right after talking to my transplant doctor I had an appointment with my infectious disease doctor, who helps my various teams figure out the best way to treat my complex, multi-resistant Pseudomonas monster. I talked to her about some of my concerns, such as the fact that we’ve treated my Pseudomonas abscesses with drainage, debridement, and antibiotics before, and they still came back. She agreed that this is a valid concern, and said she is going to explore bacteriophage treatment again in the hopes that it could provide a more permanent solution. She also agreed that it is likely that I have a leftover suture on the left side just like I did on the right side. While we won’t open me up just to look for a suture, if we do end up getting to the point of a surgical intervention, finding and removing that suture will definitely be a priority since it is likely the source of these recurrent infections. She also said that even after this is resolved, we will do maintenance imaging (probably CT scans) on a regular basis to monitor for potential problems and avoid getting caught by surprise again.
 
I also asked about something on the MRI report which seemed to indicate that the infection has created a tract through one of my ribs. During our brief phone call my transplant doctor said that the thoracic surgeon did not see any bone infection, which seemed to be at odds with the MRI report. My infectious disease doctor was also confused about this, and plans to follow up with the radiologist as well as the other doctors involved to confirm whether or not there is bone involvement. Bone infections are even harder to treat than abscesses, and require an even longer course of IV antibiotics. Right now the plan is 4 weeks of IV antibiotics, but if there is bone involvement that will be extended to 6 weeks. Either way I’m in for a long haul, but I already knew that.
 
One other minor issue is that this course of IV antibiotics was planned before we knew that Nodsferatu is an abscess, and was only meant to last 2 weeks to treat the infection that showed up during the biopsy. Due to this they gave me a midline instead of a PICC line. The problem with that is midlines are only meant for short term use, not the 4-6 weeks required for an abscess or bone infection. Right now the plan is to try to use it for as long as it lasts, but I might have to get it replaced with a PICC line later on.
 
It's only day 5 of this round of IV antibiotics, and Katherine and I are already utterly exhausted. Katherine is beyond wonderful and is helping me by running my morning dose so I can get some sleep after staying up past 3am with the late night dose. So I’m staying up late, she’s waking up early, and we’re both napping randomly throughout the day. We pretty much hate this antibiotic because of its grueling schedule, but the only other option is Tobramycin. When the choice is between severe tinnitus and exhaustion, we’ll take exhaustion every time. And at the end of the day we are SO relieved and grateful that I don’t have cancer that it ALMOST makes this process look easy!

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