The penultimate long Wednesday.

paul front 2013-07-07

OK, so it’s Sunday evening, four days after the penultimate long Wednesday, and I’m just finishing writing about it. Good thing I’m not on deadline. But, by way of apology for making you wait, this post includes a couple of photos of Paul, taken on our front porch earlier this afternoon. His poor face is really taking a beating. Now on to the Wednesday update.

You, dear readers, probably know the drill by now, but just in case, it goes like this: morning radiation, rad-onc team appointments, lunch break, med-onc appointment, cetuximab infusion, and afternoon radiation.

When Sid checked Paul’s vitals before the rad-onc appointments, his blood pressure was low: 85/55. Paul’s heart meds lower his blood pressure, but it’s usually about 100/60. Still, Paul didn’t feel lightheaded, as he sometimes does when his heart meds kick in. He hadn’t had much to drink that morning, so he might have been dehydrated. More fluids, the rad-onc team suggested, either orally, or via IV along with his cetuximab infusion.

Paul’s weight has remained stable for weeks, which continues to impress the rad-onc team. They were also impressed that he’s still eating anything by mouth; he attributed this to a combination of magic mouthwash and Yankee stubbornness. (Since Wednesday, his oral intake of food has decreased further, but he’s still eating something every day.)

In the past week, the skin on Paul’s cheeks and neck has become more red and irritated. When he has Aquaphor ointment on his face, there’s relatively little pain and itching, but he can’t have anything on his skin during his radiation treatments. (Apparently ointments or creams on the skin can create what’s called a bolus effect, intensifying the dosage that the skin receives. Not Good.) So he puts Aquaphor on after morning radiation, washes it off before afternoon radiation, and then puts more on again after the second dose. Paul asked if there was anything else that he could or should be doing for his skin. Dr. Dhami, the new resident this week, asked if Paul’s beard was still growing. It is, and he’s switched to an electric razor. She suggested that at this point he could stop shaving, or shave less frequently, without affecting the fit of his radiation mask. OK.

Since next Wednesday is Paul’s last day of radiation, Paul asked whether he would have a cetuximab infusion that day as well. Dr. Liao confirmed what the med-onc PA had told us last week, that they usually give a dose of cetuximab even if it falls on the last day of radiation.

We asked Dr. Liao what to expect after treatment ends. He explained that the maximum effect of the radiation will be 1 – 1 1/2 weeks after the last dose, so Paul’s symptoms will continue to worsen for a few days before they start to improve. (Paul is Not Happy about this, as his mouth and skin are increasingly painful.)  He should notice his skin and oral mucosa starting to heal in 2-3 weeks. Full healing can take up to 6 months, but given how well Paul’s been tolerating the treatment, Dr. Liao expects that his healing may be quicker than the norm.

Following the end of treatment, Paul will see Dr. Liao’s PA, Barbara, after a month, and will see Dr. Liao after two months, at which point he’ll also get his first follow-up scan. If Paul has concerns or needs help dealing with symptoms during the first month, he can see Barbara sooner. After that first scan, Paul will go back to Dr. Futran for long-term follow-up appointments. He will also see the med-onc team until the cetuximab side effects have cleared up. The PICC line will probably come out shortly after he finishes treatment; the PEG tube will stay in until he’s healed enough to eat regularly again.

At the end of the appointment, Dr. Liao did his usual looking at and poking around in Paul’s mouth. He reiterated that there’s been no visible sign of the tumor for several weeks now. Last week, he said that the area felt firm to the touch; this week, he said it was soft. We didn’t ask whether that was a good thing, but assumed that it was. (I just poked the back of my mouth with my finger, and it’s soft, so I think we got that right.)

Next, we went upstairs to the infusion room for Paul’s blood draw. That’s where we met up with our friend Chris, who was in WA from the Bay Area to spend the 4th of July weekend with her family. (Chris wrote this guest post on Paul vs. the Squamous Monster right after Paul’s surgery.) Her first comment to Paul was, “Wow. You look GOOD.” And she’s right; except for the shiny red face, Paul looks like himself.

It was a beautiful, sunny day, so we sat outside to eat lunch. Chris had brought a picnic lunch for the two of us, and Paul had his lunch via tube.

This week, the med-onc PA Paul usually sees was on vacation, so instead we saw Dr. Renato Martins and his PA, Leslie. (Had Paul’s blood pressure not been low, we might have just seen Leslie, but I was impressed by Dr. Martins when we first met him a couple of weeks ago, so I was glad he was there, too.)

After Dr. Martins confirmed that all of Paul’s blood pressure readings that day had been done by machines, he got out his stethoscope and did an old-fashioned reading (twice). 80/50. While doing so, he noted that low blood pressure isn’t a disease, that he’d be happy to have a pressure that low. The issue was this was unusual for Paul. Paul’s blood sodium level was also low this week (128, with normal being 135-145 milliequivalents per liter), so Dr. Martins suggested that Paul might raise his salt intake slightly, especially as he’s being told to force fluids, which can result in low sodium levels. (Because of his CHF, Paul is always careful about his salt intake, and he’s getting more sodium than usual in the tube feeding formulas, but still likely less than the average bear.)

Dr. Martins and Leslie also looked carefully at Paul’s cheeks. Their concern was that the skin on his right cheek, in particular, might be nearing the point when it will “open up” and weep. (The medical term is “moist desquamation.”) Dr. Martins said that, in some patients, they might opt not to give the cetuximab this week, but that “as we’re going for a cure” (damn straight!) he’d recommend proceeding with the infusion. However, depending on the condition of Paul’s skin next Wednesday, they might hold the final infusion. We’ll see.

While Paul napped through his infusion, and a liter of fluids, Chris and I went out for a walk along the water. At the end of the infusion, Paul’s blood pressure was back up to 95/58. We went back to radiation oncology for Paul’s second zap, and then home.

That was countdown day 6. Since then, Paul’s had radiation on Thursday (radiation doesn’t stop for national holidays) and Friday, and two days off to rest.

Tomorrow is countdown day 3. The end of the final long Wednesday can’t come too soon.

paul side 2013-07-07