Friday I decided to call the neurologist's assistant, Nicole. That poor girl had no idea what she was getting herself into giving me her cell number. ;) Anyway I had put off calling because I didn't want to abuse the privilege but we really wanted to know the results before the weekend.
To make a long story short, she called me back and said the dr indicated that the tumor has grown when you compare it to the MRI from January 18th (the day he lost feeling in his arms if you're following along). The swelling that went call the way up to C2 (in the neck) is gone but the actual tumor has grown. She said the Dr offered to do another laminectomy which would make more space in the spinal column but would give David 2-3 weeks of pain recovering plus potential complications and he would have to spend a couple days in the hospital. Thanks, but no thanks. I'm sure the dr is throwing out every possibility so there's no way we could ever say, "They didn't do everything they could have done for him."
Even though they're telling us it has grown we're not sure how much and have an appointment on the 26th with the neuro (for reals this time) and we'll get more specifics then. We have to keep in mind that there was a month or so of time when Dave didn't get any chemo when the tumor could have been growing unchecked. Starting chemo back up could have made it shrink from where it had grown to, could have slowed down the growth or it really could have done nothing at all. It's basically impossible to know from this scan. I imagine if Dave still has use of his arms in a few months they'll want to peek again to see what's going on but for now it's back to the status quo.
He's doing ok except for the allergies. They're hitting all of us, probably poor Ariana the most since she's also allergic to our kitties! ACK! She's going to have to sleep in a bubble!
Today we got a call from a surgical center wanting to schedule an appointment to put in a port. DUDE! We told him that someone jumped the gun on that and they didn't even actually discuss it with us and we have a lot of questions. Poor scheduler had no idea. Hahahaha. I called the (the oncologist) Dr Sharman's office and talked to a nurse who thought we knew what was going on and apologized for no one having discussed it with us. I brought up the MRI results and didn't know how much longer they wanted to do chemo (more on that in a bit) plus all the other concerns, anesthesia, healing time, risk of infection, necessity, blood thinners... She's going to talk to the dr in the morning and get back to us. If after weighing all those things the dr still says "yep, it's no big deal I think it's a good idea" then so be it and he'll probably have one because truth be told it would be a lot easier on him to have a port than to get poked 4 or so times every couple of weeks. But if there's any significant risk of complication I think we'll bow out of that procedure as well. They can do it under a general or local (we'd probably opt for local) and they said you can be in and out of the office in about 2 hours so it sounds fairly minor. He's just kind of fragile right now so everything feels pretty major whether or not it actually is.
As for how much longer they'll do chemo. I don't know if I read too much into it but Nicole sounded a little surprised that he was still moving his arms so well. She mentioned something about seeing some growth in the cervical spine. We're not reading too much into that until we see the scans ourselves. I ordered a copy of the MRI but I'm not sure what the format is so I don't know if we'll need some proprietary software to view it or not. If we CAN see I'll try to post a picture. Anyway David is thinking that he wants to do chemo until he can't move his arms and then he'll opt to stop so that the tumor grows faster and he doesn't have to live fully paralyzed for long. What a heartbreaking thing to have to talk about so bluntly but blunt makes it so much easier. The bottom line is that we don't want to risk the port procedure if they don't think he'll be doing chemo much longer. We're (I'm) hoping for at least a few more months but we just don't know. It's like trying to make decisions while you're still asking questions.
We've been kind of sitting on this info and processing all weekend and the bottom line is really that we don't know much more than we knew before and we were functioning just fine without knowing and we'll continue to do so as long as we have to... which will likely be forever. It's a good thing we've made peace with that. ;)
If there's anything we've learned it's that we're adaptable.