Well it's been an eventful couple of weeks.
Around the time of our last NYC trip, I was feeling the tiniest bit of a coughing/pressure sensation returning. After the trip, it rapidly got worse, until we ended up doing an extra CT scan between visits. The scan showed that there was significantly increased growth to the mass in my chest. Because I felt okay, and we had a big scans & biopsies appointment coming up with Sloan-Kettering anyway, we noted the changes, but did not alter anything about my treatment at that time. For a few days, I actually started feeling better; my cough seemed to be clearing out, and I had more energy.
Then my cough rapidly increased, until Saturday, when I felt as though I couldn't breathe at all. I resisted going in to be seen and tried to just rest all day Sunday, but I was at the point that I could barely get off the couch because if I stood up I'd have a coughing fit. So Sunday night, we came to the ER at Johns Hopkins. They got us in quickly and started doing tests. When they got to the chest x-ray, we found the problem- my entire left lung had essentially collapsed. It was not moving any air at all in or out.
So they admitted me to the hospital, did some more tests, and determined that the first step was to do a procedure called a bronchoscopy, in which they would send a tube with a camera down into my lung to find out what the problem was, and try to fix it. They also did one more CT scan, and decided based on the results that the experimental treatment probably is not working the way we want it to after all. So currently I have stopped the trial drug, and Sloan-Kettering has me off the trial for now.
I spent Monday and Tuesday basically sitting propped up in a hospital bed trying to breathe. Being on oxygen and IV drugs helped a lot, and at some point on Tuesday part of my left lung actually opened back up on it's own, and I could breathe much easier. They did the procedure on Wednesday, and basically cut and cauterized some tissue out of the way to open up my airway and allow my lung to fill properly. There was one section that apparently did not respond entirely, but most of my lung is open now and my breathing is normal, so we're calling it a success.
As a minor side note, they did take tissue samples to biopsy. It's unlikely that the biopsy will reveal anything useful, but there is still a slim chance that we may see changes to the tumor's DNA as a result of the trial drug. I do not know at this time whether that will make a difference in the future treatments or not, since part of the drug trial involves not compromising the patient's health, and collapsed lungs are probably not something they like to see. So that's a different bridge that we will have to cross when the results come back in a couple weeks.
The next steps are to determine where we go from here with my treatment. Because my lung mass and spine have always been the two largest and most irritating sites, they are considering having me do some radiation treatment aimed at those sites first, to try to shrink the biggest problem areas quickly and directly. The second option is to go straight back to chemotherapy for a couple rounds, and then look at other options including radiation, immunotherapy, and other clinical trials. So it sounds like tomorrow/today (Thursday) my team is going to sit down and discuss the pros and cons of where to start, and I will almost certainly receive my first round of chemo or radiation before I'm discharged.
So, unfortunately things are not going quite as smoothly as we hoped they were. But we are staying positive and looking ahead at our options. Meanwhile, I'm comfortable, the staff at Hopkins are all great, and they've been keeping me well fed and hydrated, and I have a button I can push for pain meds if I need them. So right now I'm just trying to rest and recuperate, and we'll see what the next stage brings.
As always, thank you for your support and prayers. I will post an update when I have more information.
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