is was Paul’s final day of treatment, which coincidentally is also the last long Wednesday. I going to keep updating updated this post throughout the day; latest information is at the top.
AND HE’S DONE.
Now we’re going home for a celebratory nap… or cry… or something…
Afternoon radiation: We’re back in the radiation oncology waiting room. Paul has washed the Aquaphor off his face and numbed up the sores in his mouth with viscous lidocaine, in preparation for his last dose of radiation.
Before we left the infusion room to come down here, Rose checked his blood pressure again. It was up to 80/60, so the liter of IV fluids plus the liter of water he drank over the course of the day have definitely helped.
Unfortunately, this last dose isn’t quite the end of our day here at UWMC. When Paul had his PICC dressing changed on Monday, the PICC nurse used a special dressing that they don’t stock in the infusion room. They wanted to use it again today, and had to ask the PICC team to send it up. When we had to leave infusion to come down to radiation, the dressing had not yet arrived. So we have to go back to the infusion room again. How anticlimatic.
The radiation tech has come to take Paul back to Vault B for his last dose. More later.
Medical oncology appointment: Paul takes his IV fluids with him when we go down the hall for his med-onc appointment. His pressure is 69/33, so systolic has come up a bit.
PA Yelena is back from vacation, so Paul sees her today. She says that Paul’s blood work came back with bilirubin levels higher than they like to see. His total bilirubin is 1.9 mg/dL (normal 0.3 – 1.9); direct 0.4 (normal 0 – 0.3 mg/dL). Because increased bilirubin can be an indication of liver problems, they recommend that Paul not get the final dose of cetuximab. She asks how Paul feels about that. He responds that they’re the experts, and if that’s what they recommend, it’s fine with him. I ask whether, as the radiation reaches maximum effect in the week after treatment ends, there would be any downside to skipping this dose. Yelena says that, while eight doses of cetuximab is the usual prescription, most patients end up getting only seven, because of one toxicity or another.
Also, Paul’s blood sodium is still a bit low (129, with normal being 135-145 milliequivalents per liter), though higher than last week, which may be contributing to the low blood pressure.
Because of the blood pressure issues, rad-onc wanted to schedule Paul for IV fluids next Tuesday; Yelena thinks this was a good idea, too. Paul wants the PICC out as soon as possible, but I prevail upon him to keep it for one more week.
We’ll follow up with the med-onc team in a couple of weeks; that and future appointments with them will be at SCCA.
Since Paul’s not getting cetuximab, but will be keeping the PICC, we go back in the infusion room until his fluids are done and his PICC dressing changed.
Blood draw, take 2: The TPA worked! Rose successfully draws blood from Paul’s PICC, and sends it off to the lab. Then she checks his blood pressure, using her stethoscope. It’s even lower than this morning. She brings over a machine, which tries three times, assuming each time that his pressure must be higher, before agreeing with Rose that Paul’s pressure is very low. 60/33. (His blood oxygen, on the other hand, is 98%, which is higher than the a.m. reading.) She reviews Paul’s current medications with him (the list they have is finally complete and accurate!), and comments that there are patients on CHF meds who have this sort of blood pressure all the time and are still walking around.
She hooks Paul up to a liter of IV saline, which we hope will help bring his pressure up.
Now we wait ’til time for his med-onc appointment.
TPA, then wait an hour: It takes all of 5 minutes for Rose (who is wearing rose-colored jeans and scarf) to inject the TPA (tissue plasminogen activator, for those who want to know) into Paul’s PICC. Then she releases us for an hour to let it work. We go to our usual lunchtime retreat, an out-of-the-way space on the first floor of the surgical pavilion. Paul hooks up to a liquid lunch, and I pick up a sandwich from the adjacent little cafe. (They are out of diet Coke. *sigh*)
Radiation oncology appointments: Paul’s blood pressure is low again: 78/50. His weight is 163, which is down a little from last week. And his blood ox level is running between 92 and 94%, which is a bit lower than yesterday.
We talk with Shannon, the nurse, and resident Dr. Dhami. First up: review his meds and check his skin. He’s taking 5-6 oxycodone tabs per day for pain, which makes it tolerable most of the time, but not when he’s eating. Also, one to two ativan per day for nausea, which at this point isn’t completely taking care of the nausea. And, whereas he was feeling nauseated only a couple of days a week early on, at this point it’s pretty constant.
Dr. Dhami checks Paul’s skin and mouth, which are still “holding up well.” This is a definition of “well” that only a medical professional would use. There’s no visible bleeding in his mouth, and only one tiny spot on his right cheek that looks like it’s peeling.
Sarah stops by to check in on Paul’s nutritional status. He’s struggling at this point with getting enough calories and sufficient hydration. Sarah congratulates Paul on keeping his weight so stable throughout treatment, but reminds him how important a high calorie, high protein diet is to his healing. Paul knows this, and I hear in his tone of voice that it’s hard for him to hear again.
Dr. Liao comes in with Dr. Dhami. He congratulates Paul on making it through treatment. (Of course, Paul points out that he’s not quite through.) He checks Paul’s mouth and skin, and reiterates that Paul is doing “well”. He asks about pain, and offers Paul long-acting narcotics. Paul declines. We discuss antiemitic meds, and get a scrip for promethazine, to try along with the ativan. He writes an order for a liter of fluids to go along with Paul’s cetuximab infusion.
Next, we head back to 8SE for TPA.
Morning radiation: Jen checks Paul in, and they’re ready for him before we can even get to the waiting room. I wait, sitting next to Paul’s friend the puffer fish, while he gets zapped.
Morning blood draw: We’re a little late getting to 8SE for Paul’s morning blood draw. Rose, one of the nurses, introduces herself, saying, “I’ll be your vampire.” She takes us to treatment bay 8, and gathers all of the supplies for drawing blood from Paul’s PICC. She flushes the PICC with saline (“Mmmm… saline,” Paul comments, as he can taste it.), then pulls back on the syringe plunger to see how well the PICC is drawing. And… nothing. Rose does another flush. Still no blood. So, now the plan is that we’ll come back as soon as Paul’s finished with his doctor’s appointments, and they’ll give him a dose of TPA, which is a “clot buster”, and try again an hour later. On to morning radiation…