And so I wait…

I’ll say up front that I’m an impatient person. It’s a character flaw I’ve been working on for many years. I hate waiting. Unanswered questions drive me crazy, and “Will the cancer respond to the trial?” is a pretty huge unanswered question for me right now.

So here I am, waiting.

Delayed

I found out there was cancer progression the first week in July. It’s the first week in August, and I haven’t started treatments yet. I discovered yesterday it’s going to be at least another two weeks, and possibly three before I can start the trial at The Angeles Clinic.

The progression was diagnosed via PET scan at UCLA. In the interim, I found a trial that looked like the best local choice, and moved my cancer care to The Angeles Clinic. As a part of the pre-trial screening, The Angeles Clinic did a new CT scan for the pre-test baseline. The updated CT shows a lot more radiation damage and inflammation, which I’d expect since I was on high-dose prednisone (which dramatically reduces inflammation) for the PET in late June and completely off it quite suddenly for the CT last week.

The trial also requires a biopsy before I can begin. The Angeles Clinic can perform a CT-guided needle biopsy on-site, but a CT-guided needle biopsy won’t work here: inflammation and radiation damage make it impossible to see exactly where to biopsy on CT. That means I need a bronchoscopy (or mediastinoscopy), which is outpatient surgery and not provided at The Angeles Clinic.

So it’s back to UCLA for the biopsy. I have an appointment on Monday with the thoracic surgeon who performed my bronchoscopy last year. If we can get the bronchoscopy scheduled for next week as well, there’s a chance I could start the trial the following week but it’s more likely to be the week after.

Instead of focusing on the delay, I’m choosing to focus on the very good news to come out of the screening tests. It’s been a month since the PET that showed new nodules on my lung, and a full-body CT shows not just the view-blocking inflammation and radiation damage to my right lung… but nowhere else they could biopsy. Over a month, the cancer still doesn’t seem to have gone beyond that lung, and the brain MRI was clear. That’s great news, and it makes the delay a little easier to deal with.

Dealing with the delay isn’t about finding distractions to make the time pass more quickly. It’s about acceptance. All I can change is what’s in my control. I can be proactive about scheduling, ask questions, do research, and take steps to help myself like taking supplements.

Beyond that, I am where I am. And so I wait.

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