DEFCON 5

Today was a down day in this journey, at least in terms of actual diagnosis, or treatment, or anything practical like that. But for us it started early and went all day in terms of the peripheral distractions.

It started Friday with news that insurance was going to hold up the scheduling of an important biopsy. We got it scheduled anyway with the caveat that it might get bumped today if we couldn't sort out the pre-authorization. Once again this was coming from the hospital, not from Blue Cross. So we hit the ground running this morning trying to hear what various parties had to say, tell others what they needed to be told, the whole process of moving information through a bureaucracy, learning as we go.

Within our core group we email about every step, each bump in the road, each wall that arises and look to each other for consensus. There are probably about 30 or 40 emails each day back and forth as things develop. It's truly a team effort. Separating wheat from chaff, identifying valid info and moving forward. Step by step.

So we finally make some progress with insurance and now need to provide them with the documentation we have been gathering to prove this is not a pre-existing condition. They are not stonewalling us, just asking for backup, but it means a delay. But we have most of the documentation they want.

So I go to the ENTs office to pick up his letter verifying that no one could have known that C's sinusitis was cancer, a letter they have had a week to get typed onto a freaking piece of paper... and it's not ready. I freak out. Not yelling, but leaning on this guy behind the counter in the way that says, "I'm this close to snapping." This whole process is made of cracks, and this letter slipped through one.

We eventually get a sympathetic staffer on board and it gets worked out, but it shows how in the midst of this raw state, with the troops of chaos and darkness flanking you, you lose some ability to quantify. Everything becomes DEFCON 5. It's like you're hanging by your fingertips over the Grand Canyon, and in that situation there are no "small problems". A missing piece of paperwork and a bad test result all begin to hit with the same intensity. I was losing my s**t.

So the day goes on and we sort out the insurance, at least enough to go forward with tomorrow's procedure. Big news. We're good to go. So I get a call from the hospital to sort out the details, finding out if this will be under a general anesthesia, when to be there, where to go, etc., and halfway through they go, "Oh wait... something's wrong. Who made this appointment?" Here it comes again.

So somewhere in the writing down of the appointment on their end there was something not done right and so now, we have no appointment. No appointment for the test that will help us see what stage C is at so we can determine the course of treatment so we can start that treatment. A test that will take 3 days to get results on so now we're into next week just to find out what the hell we are dealing with.

I'm just sitting outside work (where my freaking iPhone gets reception...), head in my hands, telling the guy on the phone, "I know this isn't your fault, but I'm furious right now." And he's just like, "So how about Wednesday?" I just give up, I take Wednesday, and chalk up another one in the "You're killing me" file.

I call the oncologist, to let him know we're delayed a day, to see when we can get started actually fighting this thing, and he says what I already know, which is that we need these results to get started. To get the chemo flowing, then the radiation, all that, since we have determined through many layers of consultation that surgery is not the right way to go for C, not at all. No surgery. So he says, "Once we get the results, I'd like a few surgeons to look at this. Three surgeons who weren't at the tumor board since surgery is usually suggested with rhabdomyosarcoma."

This is how it goes. There's an earthquake, and then a fire, and then lightning strikes and then a tsunami. DEFCON 5.

And in the midst of the day I get an email from a friend. C had gone over there on Sunday for food and wine and friends and all the other glorious things we take for granted - he attached a couple photos.



And I see this shot of C, happy, carefree, looking like a health issue as serious as a heart attack is the last thing on anyone's mind. I remember what this is all about, and we can handle it.