Ok the CT scan results. Drum roll please….
First, the CT itself
This is pretty straight forward. They inject you with an IV contrast which causes a warm and flushing sensation, along with a metallic taste in the mouth. You then lay you on a table and raise the arms overhead like a military surrender. A large white machine fires up a terrible whirring sound. It then starts moving over the body. I close my eyes. A hollow recorded instruction: “Hold. Your. Breath”. I hold. The machine passes along my pelvis to chest area. “Breathe”. I don’t. Instead I continue holding my breath to slow down my pulse as I visualize packets of ionizing radiation ripping through my DNA.
At the end of it I thanked the attendants. The main guy was an older Chinese man. He remembered me from last time and showed kindness in the form of small gestures and smiles that can restore one’s faith in people. Anonymous hospitality and kindness are so important; rays of light from the void. I went back into the changing room to remove the gown. I sat there unwilling and unable to move. I was overwhelmed with the feeling of how little control I have in this situation.
More patient self-advocacy
I was told by my patient coordinator I would get results Tuesday evening. Two days later (yesterday) I was on the phone getting the runaround from her backup person. They wanted to schedule a call Friday evening because that was the only 10 minute slot they could find. Seriously? I tore into this poor patient coordinator letting her know exactly how unacceptable this situation was. Someone dropped the ball – or worse/more likely, didn’t care enough about the patient experience to follow up – and it was not acceptable.
Onto the results – some good news!
While I had been waiting for the results from my CT scan for 2 days, in actuality I’ve been anticipating this moment since the start of this treatment. Few things are as frustrating as pressing on in some direction with absence of objective data.
Finally yesterday afternoon I got some good news – an email from my oncologist.
He told me the treatment response is solid. There is no new disease and the tumor shrunk significantly. But there the cancer isn’t gone. It would have obviously been better if I was cancer free at this point. The issue however is I started with a high “tumor burden”, meaning lots of cancer cells (again, I started this in stage III). It would have been unreasonable to expect that good a result by round 4. So things are working but we need to press on.
Moving forward the plan is to stick with the original plan. So that’s 2 more rounds and we’ll re-assess then. The biggest change is we now have some objective data that we’re on the right path. And I have some peace of mind that the treatment is working.
Yesterday was Michelle’s birthday. I was concerned it was going to be bitter sweet if the news was bad. But it was good – so here we are double-celebrating at Chez Panisse.