Fk being an interesting patient.

We spoke with Dr. Futran tonight. I’ve been anxiously awaiting this phone call for days, first expecting it sometime Monday, and then, after calling his office on Tuesday, expecting it tonight. I’d been expecting that, after this phone call, we’d know something, and we’d be able to make some plans, and it would feel like we were on a path.

Yeah. But. I’m an interesting patient. My case isn’t simple. Dr. Futran has been using the time to talk to other doctors and get opinions and consider things. And there has been a lot to discuss.

So, now, instead of feeling like we had a decision made and we know the plan and we’re starting it, I feel like we have a whole new set of decisions to make, and more investigation to do, and we’re nowhere near having a plan.


One interesting bit – On the CT they did of me a few weeks ago there appears to be a slight thickening at the top of one of my lungs that isn’t there on my scans from years ago. Maybe it’s just an artifact of the CT technique, or maybe not. We should get a PET scan to find out. (Stick a pin in the question of what that might mean and what dealing with that might be. PET scan, then next steps if any.)

Another interesting bit – Either surgical approach, either through the mouth or opening up my jaw, includes a risk of impairing the function of the repaired tissue. And I’ve already got some impairment following our previous adventure, so I don’t have a lot of room there. Potentially adding importance to …

Yet another interesting bit – Radiation and chemotherapy for this disease have apparently made progress in the last 9 years. Enough that we should discuss my case with radiation and medical oncologists, because we may be able to avoid surgery.

Which would be awesome, maybe, if it meant I didn’t have to get cut open, (but maybe not so awesome depending on what their side effects would be. Because I still get sick and twitchy just thinking about how bad the treatments I got in the 80s were.) And if we weren’t sure they’d be curative, having surgery after all that? Eeesh.

But I get ahead of things. We don’t know any of that. We can’t yet. It’s all out there in the big new pile labelled “stuff we will need to learn about and consider carefully before we get to a plan” that just got dropped in front of us. A big pile we now must wade into and process our way through, instead of just belting in and getting launched out of the surgery cannon in a week or two and recovering on the other side.

Tomorrow, instead of waiting to hear from Futran’s office about when my pre-surgical appointment will be, and what day to expect to have my surgery, I’ll be waiting to hear when my PET scan is scheduled, and when I’ll be having my ‘med-onc’ and ‘rad-onc’ appointments. And then I’ll have to go to those, and there may be other things after that. And suddenly April and May feel infinitely more complicated and unpredictable than I had imagined them to be a few days ago.

That wasn’t my plan, dammit. But then, I’d forgotten what it really means to be an interesting patient.