Maybe not cancer??

This week brings yet another unexpected twist, but this time hopefully it’s a good one!
 
The thoracic surgeon looked through all my imaging going back YEARS, and discovered that Nodsferatu has actually been there since at least 2021! Back then it was WAY too small to notice, but once you know what to look for you can see a tiny bump on the scans. But the really exciting part is that he looked at the chest MRI taken when I had an abscess back in December, and he thought that Nodsferatu looked like a fluid collection and NOT a tumor! If that’s true, that would mean that Nodsferatu is likely just yet another Pseudomonas abscess, and NOT cancer! In which case instead of putting me through a rigorous surgery and opening my chest to remove it, he MIGHT be able to just drain it and treat the infection with IV antibiotics, which would be MUCH less invasive!
 
This was a very exciting development, but it definitely required more imaging before coming to any conclusions. He ordered a chest MRI, and remarkably I was able to get it done that very same day. And if I’m reading this MRI report correctly, Nodsferatu looks like an abscess!!!
 
Meanwhile my transplant team was already working on getting me setup with home infusion to treat the Pseudomonas infection that showed up in the biopsy. Yesterday I had a midline placed, and today I started IV antibiotics. Unfortunately the antibiotic of choice is Fetroja (aka cefiderocol), which requires 3 hour infusions 3 times a day. To make matters worse, each dose is split into 2 bags, so it has to be changed halfway through. It’s far from our first rodeo with this particular antibiotic, so Katherine and I already know we won’t be getting much sleep for the next few weeks. And abscess treatment usually isn’t a quick process, since there isn’t any blood flow inside an abscess and it takes a while for the antibiotic to penetrate it. We’re not exactly looking forward to getting back on the no-sleep train.
 
HOWEVER, I think I mentioned in a previous update that our bar has been lowered DRAMATICALLY since this whole nodule saga began. A month ago if you had told me that I have YET ANOTHER Pseudomonas abscess that needs to be treated, I probably would have lost my damn mind. But NOW, I will be THRILLED to be told that I only have an abscess and not freaking cancer! It’s amazing how quickly your perspective can change!
 
Even though it’s the much better option by far, Pseudomonas is still one stubborn bastard and is ABSOLUTELY my arch nemesis. So to recognize this, Katherine somehow managed to find the absolute best plushy in existence! Apparently the site that provided the cancer plushy also had another incredibly topical item in their shop. I was SO surprised and laughed SO HARD when she gave it to me! And now whenever Pseudomonas ticks me off, I can just punch it in the face!

Biopsy fail

Well, the biopsy… happened. And that’s pretty much all there is to say about that.
 
The biopsy samples came back showing… nothing. And according to the PET scan there is definitely Something, so we think they missed the target when collecting the samples. Which is incredibly unhelpful.
 
In a weird turn of events, I still don’t have answers, but I DO have the beginnings of a plan. I spoke to my transplant doctor yesterday, and she said instead of trying another biopsy, she’d rather just take the whole thing out and figure out what it is afterwards. I definitely prefer this option, because the biopsy ended up being more painful than I expected. The procedure itself was fine because I was high as a kite on Versed and fentanyl, which was the one enjoyable part of this whole experience. Once the anesthesia wore off, however, I was in quite a bit of pain. I was also anxious, because there is a significant risk for pneumothorax (aka a collapsed lung) after a lung biopsy, and I wasn’t sure how I was supposed to tell the difference between normal chest pain and pneumothorax chest pain. Fortunately I didn’t have any symptoms other than pain, and that has been getting better as the days go on, though some is still lingering. They also put the biopsy needle in through my back by my left shoulder blade, which happens to be almost the exact spot where I’ve been having pain that I’ve been going to PT for over the last couple months, so that was less than fun. If I’m probably going to need surgery anyway, I’d rather cut (ha) to the chase and just get it over with instead of throwing in additional painful procedures. I have a consult with the thoracic surgeon Monday morning, so hopefully they can get me in for surgery just as quickly as they got me an appointment!
 
The one thing that DID show up in the biopsy results was... Pseudomonas. I was simultaneously INFURIATED and relieved at the thought that this whole thing might just be a severe Pseudomonas infection. I believe my initial reaction was something along the lines of “PSEUDO-F@#%ING-MONAS!!!” That damned bacteria is DETERMINED to kill me one of these days! But I also realize that a Pseudomonas infection would be FAR better than cancer. Unfortunately, my transplant doctor thinks it only showed up because my lungs are colonized with Pseudomonas and that it’s not actually the cause of the nodule. We might still treat it with a round of IV antibiotics anyway though.
 
Speaking of The Nodule, Katherine and I decided that it needs a name. I’ve been thinking of it as an alien monster in my chest, which of course brings to mind the chestbursters from the Alien movies, but they don’t really have names and Xenomorph just didn’t feel right. I tried to think of other horror movie monsters, and with the help of the CF Discord server came up with Nodsferatu (a play on Nosferatu), aka The Nodsferatule, or Nods for short. Katherine also decided that I needed a new critter after my biopsy, but she couldn’t just get a regular bronchoscopy animal since this wasn’t a bronchoscopy. So she somehow managed to find a cancer plushy! And even better, you can flip it inside out to turn it into a healthy cell! It was so surprising and definitely made me laugh!
 
So once again I’m waiting. Hopefully not for long, and HOPEFULLY the next procedure will be the LAST one for this particular problem!

One step closer to answers

The biopsy has officially been scheduled for the morning of November 10^th. Unfortunately that was the first appointment they had available, but now I’m on the waiting list, so hopefully something will open up sooner. Waiting 2 full weeks to confirm whether or not you have freaking CANCER and find out what kind it is doesn’t exactly sound like a great time, but there’s not much I can do about it. On the other hand, maybe it’s reassuring that this isn’t a 5-alarm, all-hands-on-deck, get-her-in-NOW situation.
 
In the end Interventional Radiology will be doing the biopsy, which means it will not be a bronchoscopy. They said I will receive both sedation and local anesthesia, and that I shouldn’t be in the procedure room for more than an hour and a half, but afterwards I will have to wait in recovery for 2 hours and get 2 chest x-rays to make sure everything is ok. I also have to arrive an hour early, so the whole thing will take about 4 hours. I don’t know how long it will take them to get results afterwards, but hopefully it will be quick!
 
So now I get to twiddle my thumbs for the next 2 weeks and try not to think cancer thoughts or something. We’ll see how that goes!

The big C

Well, the good news is that there’s only 1 nodule. The bad news is that it’s probably cancer.
 
The way a PET scan works is that they inject you with a radioactive tracer, and then wait for your body to absorb it. Then they scan you to see how much of the tracer different tissues absorbed. Different types of tissue absorb different amounts of the tracer. Unfortunately, the nodule absorbed the tracer in way that strongly suggests that it’s malignant.
 
Katherine says that as soon as they told me it would very unusual for it to be cancer, she should’ve known right then and there that OF COURSE it was cancer, because that’s just how I roll.
 
The next step is to get a biopsy and find out exactly what we’re dealing with. The assumption is that we’re dealing with PTLD, but we won’t know for sure until it’s biopsied. My transplant team is currently coordinating with multiple other teams to determine the best team and the best method to do the biopsy. One of the questions is, will they do a bronchoscopy and get a sample from the inside, or will they come in from the outside instead. It seems that the tumor is right on the outer edge of my lung, which makes it a bit less clear cut. So now we’re waiting for the other teams to do their assessments and follow up with transplant. We had hoped to get an answer before the weekend, but it’s hard to coordinate between so many different people, and unfortunately things just haven’t come together yet. So now everything is on hold for the weekend and will resume next week.
 
My transplant team has reassured me that they are taking this extremely seriously and will get me the best care possible. At the same time, they also acknowledged that after almost 6 and a half years on anti-rejection meds, this is not an unexpected complication. There is a long list of things that can go wrong after transplant, and for years I’ve been keenly aware that the top 2 on the list are rejection and cancer. So even though this is definitely scary, it also isn’t a huge surprise. There’s a reason I get so much testing done on a very regular basis, and it’s precisely so that we can catch and treat things like this before they do too much damage.
 
Katherine and I have been handling it surprisingly well so far. Not only have we had several days to process and prepare for this possibility, but our bar has been dramatically lowered over the course of the last week. Instead of being like “oh no, cancer!” we were more like “yay, only 1 cancer!” We were both very worried that the PET scan would show multiple areas of concern, and are immensely relieved that only 1 nodule showed up. Now we’re moving on from wondering and worrying mode, and transitioning into go mode. Unfortunately we have a lot of practice dealing with dramatic life-or-death medical issues, and it’s honestly easier to have a problem to tackle than to be sitting around wondering what if.
 
There are still a lot of questions to be answered, and right now I have no idea what this journey is going to look like. I am so grateful to have so much support, not just from Katherine and my mom, but also from my amazing friends and extended family and community. So I'm squaring my shoulders, putting on my fight song playlist, and getting ready for the next battle. CF still hasn’t managed to take me out after 46 years, and it’s for damned sure that I'm not giving up now!

I'm radioactive, radioactive!

Well that was interesting! Check out the shielded needle they used to inject the radioactive tracer for my PET scan! I just love when they're all, here's this dangerous substance that we need to make sure nobody touches - let's put it inside you! 😂

Also this is my current theme song:

https://youtu.be/ktvTqknDobU?si=PhY7nBAVO7wxKkV0

I'm radioactive, radioactive!

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!!