“So then, it wasn’t just in my head? There was a reason that I was in such pain?”

On thursday, the day after our twilight zone wee hour visit to the radiology unit, things went a good deal more smoothly. I was greeted outside my room by a “transporter” with a gurney.. I asked if I could help her push it somewhere. It took her a second to get the joke. I’m not sure if she had realized right away that I was even the patient. I climbed on dutifully and was wheeled down to that same room where at two o’clock that morning after waiting an hour with no explanations for the wait (they HAD woken us up at one o’clock saying to come down, that the were READY) I had turned to hill and said, “Let’s just stand up and walk out of here. I know the way back. I’ll bet you they don’t even notice.” And they hadn’t, at least not for 15 minutes or so. And this was impressive since we had been the only people there. We’d had enough time to find our way back up to our room, brush our teeth, get re-connected to the IV drip, and crawl back into bed, when the guy working in reception down in radiology burst into our room and sputtered something like, “Where did you GO!!??” I waited for the next question. That one had sounded smarter in his head.

In the light of day, though, I was wheeled in and greeted by a short string of hospital higher ups who pressed my hand and apologized about the events of the night before. Somehow everyone seemed to have heard the story. I was in and out of there in 15 minutes flat. A little later that day they had thrown in another forearm X-ray for good measure.

The entire staff of the palliative care unit was top notch. None of them over sentimental, but all with a sort of bedside manner that after 5 years dealing with this disease I had simply begun to believe didn’t exist in modern medicine.. Just that strangely rare ability for natural human connection. It was our N.P. Julia who came in Thursday evening to discuss results with us.

“Ok. So. Let’s start with the arm.”

Hill and I had both realized in that moment that the CT scan news wasn’t going to be good. The arm, it turns out, had done a bit of healing since the week before. It was showing some buildup of callous around the displacement that hadn’t been present in the X-ray taken directly after being man-handled by that nice lady the previous tuesday. Draw whatever conclusions you care to. The consensus seems to be that it is more or less on a path to healing at this point, and that if I wear a splint ALL THE TIME it will probably get there. That the displacement isn’t going to cause any real problems. Plating it MAY be a possibility. Pretty clear though, that whatever I do the clock more or less re-sets to day 1 on getting healed up enough to ride mountain bikes again. Given the rate at which my level of fatigue has been increasing, it’s hard for me to imagine that 6 weeks from now I’ll have enough left in the tank to swing a leg over. This is hard to swallow.

“And the CT scan?” Julia’s eye’s got a bit misty. “Not good, huh?”

“No. I’m sorry.. It’s bad. They found more tumors.”

They had only done a scan of my pelvis. I’m new to this palliative care model. It was only a week ago that I had my first meeting with a palliative care doc (and now this morning I’m having my first meeting with a member of my hospice care team.. things are moving fast). It seems that it’s not really the M.O. of palliative care to go looking for tumors. they had deliberated about whether or not to do a CT scan at all. In the end I think that they had decided they would (partly) because I seemed to be in such good shape that they believed they’d find some other reason for this sudden onset of ramped up pain. And also, perhaps, because from the moment I walked in I had demonstrated a certain level of curiosity about, and maybe understanding of, the issues at play. During the initial interview while I was giving them my medical history, one of the docs interrupted me and said, “did you go to medical school?” In the end, I guess they decided that even in the worse case scenario they weren’t going to discover anything that I wouldn’t want to know about. They had figured me out pretty fast.

There is a large tumor at the site of the original primary. There are several more smaller tumors, semi attached to that one, in the lower right portion of my pelvis. There is evidence that local lymph nodes are involved. All of this since a PETCT in November that showed no activity in the pelvis at all (much to the surprise of my doc at the time, who felt that the simplest explanation for phantom asshole “cancer” pain was a local recurrence and NOT the metastasis shown by the scan at the time). In other words, things are moving quickly. At least one of the tumors in my pelvis is showing necrosis at the center, which can be caused by growth so rapid that the body can’t generate blood supply to the tissue fast enough to keep it alive.

“So then, it wasn’t just in my head? There was a reason that I was in such pain?”

“Anyone with THAT scan would be in excruciating pain..”

The dose of narcotics that they had me on in the hospital to manage the pain was roughly 6 times what I had been taking leading up to last tuesday when my pain suddenly spiked. One of the docs suggested that this could well have been a straw that broke the camel’s back type scenario. That perhaps I had been managing to live with an ever increasing level of pain for quite a while, and that suddenly one day it had just reached, by another small increment, a level where I could no longer cope with it.. and was suddenly FEELING the full brunt of it. So that suddenly it felt like something on completely different scale. Sadly, it seems that it’s pretty hard to un-ring that bell. They have switched me to a fentanyl patch with dilaudid for break through pain both at doses that probably would have put me in coma 6 months ago. Between the switch in medication and I guess just the emotional toll of my stay at the hospital, I’m left feeling pretty frail. I hardly recognize myself.

“So. Docs. I know it’s a terrible question to have to answer.. and maybe a pretty difficult one, but just for the sake of planning.. logistics.. what sort of time do you suppose I’ve got left?”

“Weeks to months.”