It’s been almost a month and a half since I originally got the PET results that showed recurrence. It’s been a tough wait to start treatment, and the wait isn’t over yet.
The Angeles Clinic needs a biopsy to begin the trial. Their CT scan, performed as a part of the pre-test screening, was difficult to use for a needle biopsy since it showed so much radiation damage and inflammation, so Dr. Balmanoukian suggested a bronchoscopy would be more helpful. That was last Monday, and the earliest appointment I could get with the thoracic surgeon who performed a bronchoscopy on me last year was a week later (today).
Last week, The Angeles Clinic called to schedule the first trial treatment for Thursday, August 18th. I put that on the calendar, and crossed my fingers we could get the biopsy resolved by then.
Friday night, I started having pain in my right side when I breathed deeply. By Saturday morning, the pain was constant and severe, and there was a strange kind of scraping or dragging feeling with each breath. I emailed Dr. Balmanoukian about it, and she asked me to go straight to the ER because it sounded like it might be a pulmonary embolism. I knew the odds of a clot go up dramatically with platinum chemotherapy (which I’ve had twice) and the odds go up even more with lung cancer–so I didn’t hesitate. I woke up Charlie and we spent the day at the UCLA ER. The end result: no pulmonary embolism and a diagnosis of pleural effusion (liquid below and around my lung) which was increased on that day’s CT versus the PET/CT a month ago. The CT Saturday also showed progression in the nodularity in my lungs–not huge, but progression all the same.
This morning, The Angeles Clinic called to let me know an earlier seat opened up to start the trial, and I can start on Monday (a week from today). They decided to book both it and Thursday for me, so I have a fallback in case the biopsy didn’t happen this week.
So I went into today’s meeting with the thoracic surgeon hoping to come out with a bronchoscopy date. Instead, we waited about three hours while the surgeon tried to get Dr. Balmanoukian on the phone to talk about the case and his review of the PET/CT and Saturday’s CT. The end result: a bronchoscopy won’t work (and won’t give enough tissue even if it did work), so the options are a core needle biopsy or surgery.
Wait–a needle biopsy? Wasn’t a needle biopsy ruled out by The Angeles Clinic? Well, that’s the root of the problem, really. The Angeles Clinic’s two radiologists interpret their CT scan differently than UCLA interprets their scans. The Angeles Clinic had trouble seeing past the inflammation to locate a clear biopsy location. UCLA believes a core needle biopsy will work, so now I’m waiting for that to be scheduled. My hope is that it’s faster to schedule than a bronchoscopy would have been, so I can still start the trial next week.
It’s hard to wait, especially knowing the cancer is progressing. I’m doing a lot of different things to try to slow it down, and I feel tremendous pressure to try to find time/energy to do more. At the same time, the pain on my right side is troubling, and it’s a little harder to breathe this week versus last. It feels like I have a chest infection starting up, so even as my brain’s pressuring me to do more, my body’s telling me to do less.
I know things will settle down when I start treatment… but I want to find a way to get them to settle down now. I think the answer is in meditation, rest and creative outlets. The answer is in balance, and patience.