Sooo… I’ve had a few days to think about the most recent thoughts from HawtDoc.
At the beginning of last week I called HawtDoc’s office and left a message regarding getting an update as to what the plan was for beginning the second round of Rituximab. I got a call at the end of last week from HawtDoc’s receptionist telling me that she is in the process of trying to get me in for another Chest CT Scan and then he’d like to see me afterwards to talk. At the moment, he is not planning to do another round.
This kind of leaves me in a bit of confusion, limbo and some fair bit of concern as to what’s going on — I know that he’s personally overseeing the infusion treatments, but I didn’t know that he was going to officially be calling the shots as to whether or not we proceed with treatments. It took us three whole years to get us to this point in time where we could actually move forward with doing infusion treatments and now we’re stalled.
I’m not angry by any means. I’m not even really frustrated by the whole thing — what I am is a tad bit concerned that perhaps all the tests we did recently (Echocardiogram, Abdominal Ultrasound, Chest Xrays, etc) may have popped up something that he’s not telling me about; but it’s not so serious that it’s requiring me to come in ASAP to discuss options, so he’s waiting on a CT Scan to confirm his suspicions. Since my biggest concerning side effect from the first round of Rituximab was chest pain and difficulties breathing, it’s not like the PFTs I did are definitive in showing improvement when the numbers are going from 52% to 54% functionality. The change in numbers was pretty negligable, if anything, so I am guessing they mean practically very little to HawtDoc in the scheme of things.
So… I’m stuck.
I’m worried, but I’m not.
The thing I hate most is uncertainty and no clear directional path of what comes next.