Hi fellow readers -- I'm gonna let you know up front that this one's not gonna be all roses and chocolates.
First things first: we're making progress on the insurance angle and the nurse advocate for us has given us a couple options to work with here. Apparently the main sticking point (and this sure would have been nice to know oh, say, a week ago or something) is that Alta Bates simply cannot refer people to Stanford. It's not in their network; they have no connection. There are no ties there. They simply would never have referred me there for any sort of second opinion. The nurse advocate, a very nice woman named Barbara, is working hard to find compromise solutions here and we expect more phone calls, referrals and movement to happen this morning, once she gets in the office around 9.
(I cannot believe how long this is taking me to type, but I'm coming off 3 MG of Xanax. More on that in a moment. I'm hitting backspace and correcting my spelling literally once every 2-3 seconds.)
She's basically suggested two options: one, let the Alta Bates docs make a self-assessment on whether they can handle my case and if they can't, they'll refer me to UCSF, which is a very fine cancer facility in its own right. I'm okay with that, so long as the UCSF referral, consultation and treatment don't take too long.
Two, we try mid-stream here to change my medical group from Alta Bates to one that DOES have ties with Stanford. Barbara will be calling this morning to discuss the viability of this. If it can happen, then I'll get a new GP with the new group who will refer me directly to Stanford, and we eliminate most of the rest of the hoops and get this thing going.
So, we'll find out this morning which direction we'll go.
In the meantime, my pain is growing. This morning I'm feeling okay at best, but that probably is more attributable to the huge dose of Xanax I took last night just to get to sleep. There are very few positions left on the couch that are comfortable for me. I fell asleep sitting up and eventually migrated to my side, but sleep was more drug-induced, and there is currently a shooting pain in my side if I breathe too deeply (as in, more than halfway in). My waist and back also hurt intermittently.
So like I said, it's not all roses and chocolates. I don't feel like my body in its entirety is breaking down or anything -- the functions all still feel pretty good -- but the tumor has either grown or shifted (or maybe both) and is definitely impacting my right lung now too. That doesn't mean that it's in the lung, but more likely has grown/shifted to the point where it's pressing up against it and causing breathing pain.
The vicodin really isn't working, Advil isn't working, Tylenol isn't working -- this is all internal pain coming from a moving of organs and the presence of a massive tumor that shouldn't be there. Not sure which pain medication actually WOULD have an effect here, but if you know of one, please suggest it.
Dad is on the phone with various people and is also discussing checking me into a hospital to manage the pain while we await the various insurance milestones. I don't know if that's going to happen or not; we'll see how things feel as the day progresses. If the pain subsides a bit, I can manage it from here at home until we're ready to test and go into surgery (assuming that happens within the span of a few days, and not weeks); if it continues along the lines of last night, then maybe I will have to go to the hospital or at the very least receive some stronger medication that will manage the pain and help me sleep.
This is not the most positive of blog postings but please realize that despite the recent travails -- which have been the worst so far but could still get a lot worse over the course of treatment -- my mindset has not wavered at all. I'm still 100% positive I'm going beat this thing and I know all of you are as well. It's harder to have faith when it's 2 AM and you're in considerable pain, but I know things could (and probably will) even get worse from here before they get better. It's all part of the journey and whatever I have to do to get better, I will. I implore all of you to continue to have faith in that.
And if last night was just a bad bump in the road, maybe I'll be sticking around the homestead longer than expected; we'll make any sort of short-term hospital or pain medication decisions later today after assessing how I'm feeling. Since this all started, the pain has been inconsistent and intermittent and maybe today will be much better than yesterday.
One last note: my dad now has my blog password and if the gears jump into sudden action such that testing and treatment begin immediately, or I end up in a hospital bed for a couple days to await treatment, he'll keep you posted. So, don't expect the news to dry up if I exit the communication loop for a few days, but I also encourage to continue the phone trees and email lists to get out the latest and necessary information so that all my extended family (which is what all of you are) can know the latest.
Let's see how today goes, what sort of news we get, and how my body feels, and if I'm up for it, I'll post again tonight with more. Again, my love and thanks to all of you for your various parts to play in this journey, and together we'll reach the end of this road and it will be a great thing. The road is going to have some potholes (like last night), but the ultimate destination is going to be worth it.
With much love,