Tuesday, January 7, 2014

Now What.

Asa saw his primary care doc on Thursday. We talked about his meds, how they're working, what's not working, how bloated he feels, and how he needs another paracentisis. She recommended he get some Gas-X and wrote him a scrip for precription strength. We stopped at a Walgreen's on the way home and grabbed some OTC Ultra Strength for him. It works, and that's a huge relief.

Next day, on Friday, he had his follow-up at the Cancer Center. The chemotherapy drug they were giving him was making things actively worse. His doctor said to stop that drug for a week, then he'll do more labs and re-assess what is the what.

Here's what's interesting to us: when Asa was getting his vitals taken, they asked him as they always do, what's your pain level? And as always he answered "8." And on that day - for some weird reason known only to them - they decided to Actually Do Something about it. Once they parked us in "the doctor will see you now" room, not one but TWO nurses showed up to talk with us about pain meds.

Asa expressed to them - REPEATEDLY - that he cannot tolerate opioids. "There's tons of other meds we can try," they said. In my head they were like game-show goodie girls, showing us glittering trays of sparkly pills. Of course they didn't ACTUALLY do that. But it felt like that. They scurried off, we looked at each other and said, "Where the fuck have these people been for the last 5 years?" In comes the doctor. He showed us the results of the lab work, then told Asa he was writing him scrips for two different pain meds. One was for a Fentanyl patch (super low dose, says the doc). The other is for Dilaudin. So we take the prescriptions across the street to the pharmacy where we drop them off.  The wait for getting them filled was up to two hours, so we opted to come back on Saturday morning. Asa was so tired by then, so wrecked by fatigue, anxiety, and pain - I just took him home, where he slept almost all day.

Saturday morning we rolled out early - went to breakfast at Hurricane's and got to the pharmacy about ten minutes before they opened.  There was an alarmingly long line snaking around the building. Leaving Asa in the car, in the sun, listening to the radio, I queued up. Surprising to me, it moved along pretty quickly. There were still a few seats left inside. I checked my number against the NOW SERVING board and texted the news to Asa. "serving 503 im 547." After about five minutes he texted back, "wow." During the hour and 10 minutes I waited, Asa learned How To Text. Between us we devised an impromptu "Pharmacy Bingo" game.

Got him home, applied the Fentanyl patch and off I went to work. He immediately went to sleep. We checked in with each other every hour or so. When I got home 6 hours later, he'd managed to sleep in between calls and bouts of nausea. I managed to get a little food in to him, but that reappeared almost instantly. The next day, 24 hours in to the 72-hour patch, we removed it and he started feeling better right away. We were so distracted by Other Stuff we didn't bother to look up Fentanyl.


We looked up Dilaudin.

We agreed he should not take this drug but should call the oncologist's office and tell them, yet again, that he cannot take opioids and why, and see if they can't come up with one of the "tons of other meds" he could try that are NOT opioid. 

In the meantime, he's been smoking the medical marijuana and that's helped more than anything they've come up with. 

On another note, I crocheted a hat for him which he wore to his appointments Thursday and Friday. It was much admired by all. When his primary care doc commented on it, he told her it was his cancer beanie and she said - "Oh dear. Did you lose your hair?"*
"No," says Asa, with a sigh. "I just like the hat." 

Best Beanie Ever

We see the oncologist again this Friday. What wonders await, eh?

 *She's been his doctor for nearly ten years and didn't remember he's bald? WTF?