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!

Small update

This is completely unrelated to the recent biopsy drama, but I figured I’d share a little bit of good news for a change!
 
Over a year ago I had an ear tube placed to drain some fluid and treat a stubborn infection. It was expected to fall out on its own as the eardrum healed over the next 6-12 months, but a year later it was still in place. The ENT tried to remove it in August but that REALLY hurt, so we decided to give it a few more months and hope for the best. The ENT also let me know that between diabetes and my anti-rejection meds impeding my healing, and the fact that the tube had been in for so long, it was possible that the hole in my eardrum might never close completely even after the tube came out.
 
I had my follow up appointment today, and braced myself for a very painful tube removal. But when she looked in my ear, there was the tube, already out of my eardrum and just sitting in my ear canal waiting to be easily and painlessly removed! And even better, it looks like the hole in my eardrum has fully healed!
 
The other good news is that ever since the ENT manipulated the tube back in August, I pretty much haven’t had any more of the dizzy spells that had been plaguing me over the previous year. So it seems the tube was likely the cause of those unpleasant symptoms, and hopefully now that it’s gone that will finally be the end of that.
 
I’ve had a lot of bad and scary and stressful medical news lately, so it was REALLY nice for something to go right for a change. Hopefully this will be the start of things moving in the right direction!

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!!

Random annoyances

It’s been quite a while since I posted a health update! That doesn’t mean that nothing has happened, it just means nothing MAJOR has happened. Instead I’ve had a series of random annoyances, and honestly, I just didn’t feel like writing about them. I actually didn’t even post about most of my summer outings and adventures on Facebook either. For the last several months I’ve been feeling very tired and heavy, and a lot of that has to do with Cam’s death. Losing Cam really hit me hard, and even though you wouldn’t necessarily know just by looking at or talking to me, I’ve been carrying that grief around like a heavy burden. It’s only been recently that I have occasional days when I don’t think about him and haven’t been randomly bursting into tears at least once a week. Throwing various random medical nonsense on top of that grief just felt like too much, and posting about it REALLY felt like too much. But I’m slowly adjusting, and finally feeling ready to delve into the last few months.
 
Also, I get a little anxious when I go too long between health updates, because I’m always waiting for the other shoe to drop. I’d rather catch up now before something major actually DOES happen, because it’s pretty much 100% guaranteed that something WILL happen eventually.
 
So let’s go back to June. The theme for June was: infusions! As has happened a few times since transplant, my iron levels got a bit low, so my transplant team prescribed a round of iron infusions. Unfortunately, due to bureaucratic idiocy, I couldn’t use the infusion suite at the Penn location in Cherry Hill. Apparently my doctors in Philly don’t have privileges there, and I needed a hematologist at that facility to place the order. It happened to be I DID need to see a hematologist anyway about getting off blood thinners, but they couldn’t get me in for a month, and I didn’t want to wait. So for 3 weeks in a row Katherine and I got to shlep into Philly once a week for an iron infusion. And then a couple weeks later we got to shlep back again for an infusion of IVIG. My monthly bloodwork had shown that once again my anti-rejection meds were being a little TOO effective and my antibodies were low. Since I’m not great at producing my own antibodies, I occasionally have to get them from someone else in the form of IVIG. Between the iron and the IVIG it felt like the HUP infusion suite was becoming my new home!
 
In June I also had a regularly scheduled appointment at transplant clinic, and my lung function was an amazing 101%!!! Despite this incredible number, I was having some unexplained shortness of breath, so I had a bronchoscopy to open up my airways again. I didn’t end up feeling better right away, but thankfully over the next several weeks the shortness of breath did ease off. I’m still not as strong as I could be, and I definitely need to get back on track with exercising and improving my endurance, but thankfully I’m breathing better now than I was a few months ago.
 
The annoyance for July and August was something that I actually had been dealing with for almost a year but suddenly got worse over the summer. Last October I suddenly started having random, brief dizzy spells. I couldn’t identify any triggers, and never knew when it would happen. I was already seeing an ENT for ear problems, and actually had a tube placed in one ear last summer to drain fluid which ended up being a pseudomonas infection, but dealing with my ears and dizziness got put on the backburner when the abscess drama erupted in December. My ENT did suggest an MRI in January, but I was VERY resistant to that, as I kinda panicked when I had an MRI in December. So we agreed to keep monitoring the situation and reassess in a few months… which takes us to July. In July, out of nowhere the dizzy spells became WAY more frequent and intense. Thankfully after a few bad weeks things eased off, but that was enough to convince me to take some anxiety meds and get an MRI. Unfortunately, I couldn’t get an MRI appointment for 2 months. But then! I had an ENT appointment at the end of August, during which she saw that the tube in my ear had not fallen out as expected. She tried to pull it out, but that REALLY hurt, so we decided to wait a few more months to see if it comes out on its own. And since then I haven’t had a single dizzy spell! When I finally got the MRI it didn’t show any issues with my ears, so the current theory is that maybe the ear tube was somehow causing the problem. So hopefully that’s one unexpected problem that was just as unexpectedly solved!
 
Also now I have some very cool pictures of my brain, which are prominently displayed on my fridge. Bonus!
 
And that brings us to August’s annoyance, which is actually still ongoing. One day in August I randomly woke up with significant neck and shoulder pain. I figured I must have slept funny and it would just go away… but it didn’t. Instead, the pain spread down my left arm, and I started having tingling off and on. After a couple weeks passed without improvement I scheduled an appointment with a specialist, but unfortunately nothing was available for 2 months. At my transplant clinic’s recommendation I went to Rothman Orthopaedic Urgent Care, who gave me prescriptions for muscle relaxers, physical therapy, and an MRI. Insurance denied the MRI, so we still don’t actually know what’s wrong, but based on my symptoms the assumption is something is wonky in my neck and triggering a nerve. Thankfully the pain has improved, but I still have tingling in my left arm, some of my fingertips are numb, and recently that arm has started getting weak. So now I’m just continuing PT until my doctor’s appointment at the end of the month, and hoping he has some solutions for me.
 
Getting old is great and all, but I could REALLY do without injuring myself in my freaking sleep. Who would’ve ever thought I’d survive long enough to start having Old People Problems??
 
On the plus side, I had another transplant appointment a few weeks ago, and once again my lung function was 100%! At least something is working right!!
 
So that’s my last 5 months of medical shenanigans. A bunch of uncomfortable annoyances – and I will freely admit that I’m REALLY unhappy about the ongoing pinched nerve issue – but thankfully nothing majorly dramatic. Hopefully I can continue the trend of avoiding major drama AND ALSO get rid of the random annoyances SOON!