Wednesday was Day 15 of Paul’s radiation treatments, which means that he’s now more than halfway through. But being halfway done means that there’s still halfway to go, and from here, that second half looks really long. Before we left for UWMC Wednesday morning, Paul complained to me, “I’m bored with this game. I want to play a different one.” If only it were that simple.
Instead, we played the usual long Wednesday game again, starting at 9:30am and finishing up around 4:30pm.
The radiation oncology department has started a remodel of their reception area. Instead of patients following fish, we all now follow detour signs, down a corridor lined with labs and offices, to a makeshift check-in at the small waiting area next to the vaults. A makeshift waiting room has been set up in what was once some sort of pediatric treatment room. (Along with the usual medical stuff on the walls, and curtain tracks on the ceiling, the walls are painted with cartoon sea creatures, as well as a deep-sea diver holding a small sign that reads “Get well soon.” Sweet.) Paul will be done with radiation by the time the remodel is complete, but we’ll see the new reception area when we return for follow-up appointments.
After Paul’s morning radiation, we hung out in an exam room while the rad-onc team of RN Shannon, nutritionist Sarah, resident Dr. Amarnath, and Dr. Liao took turns coming to us. At this point, we’re mostly discussing side effects and how to manage them. Here are the highlights (or lowlights, depending):
Paul’s weight was stable again, which made everyone happy. He had some nausea over the weekend, somewhat controlled by zofran and ativan, but none early in the week. The combo of senna and colace seems to have the constipation situation under control for now. Shannon asked how much exercise he’s getting, and suggested that taking a walk can help with both digestive issues and the fatigue he’s starting to feel. The skin on his face is redder, drier and more irritated. Also, the skin on his fingertips and heels has been splitting, and the corners of his lips, too. (Ouch!) Shannon suggested more moisturizing, which he can do as often as he wants anywhere but his face, and more fluids.
With Sarah, we went into Paul’s food and fluid intake in more depth. She takes careful notes each week, and reviews them with us for any changes the next week. Since last week, Paul has increased his tube feeding as the mucositis in his mouth has increased. He’s still trying to eat as much as he can by mouth; the magic mouthwash helps a lot (and also makes it easier for him to put in the oral stent for his radiation treatments). Swallowing isn’t painful; it’s having food touch the sores in his mouth that hurts.
Dr. Amarnath told Paul that he’s an easy patient, in that we’re not making them do a lot of work to get him through this. Seems that our medical knowledge, the research we do when we have questions, and our ability to figure things out for ourselves are outside of the norm. Sadly, last week was the end of Dr. Amarnath’s residency at UWMC, so we won’t see her again.
Dr. Liao looked at Paul’s face and neck, and told us that most of the blotchy redness we’re seeing is due to the radiation. However, he pointed out a few areas on Paul’s forehead and cheeks that he said are cetuximab rash, though very mild. He still thought that Paul’s skin was holding up quite well to the radiation. When he looked in Paul’s mouth, he commented, “it looks really angry in there,” but he said that there are no longer any clinical signs of the tumor at the back of Paul’s mouth.
Each one of the team asked Paul how much oxycodone he’s taking for pain; when told that he took a total of 15mg the previous day, they all said something to the effect of, “THAT’S ALL?” Paul has been unwilling to take more opiates until he figured out how to mitigate the resultant constipation, which was even more painful than the sores in his mouth. He seems to have gotten that mostly worked out, and as his medical team has reminded him that pain is not his friend, he’s been increasing his oxy intake so that he’s not playing catch-up with the pain.
Paul had chills and achiness the night after his last dose of cetuximab, so when we met with PA Yelena for Paul’s pre-dose lab check, he asked whether he might be developing an allergy. While allergic reactions are rare after the first dose, Yelena added an order for benadryl and steroid pre-meds just in case. She also told us that they don’t stop giving cetuximab due to mild allergies; that only happens when someone has anaphylactic or cardiac reactions.
Aside from taking a little longer because of the pre-meds, the cetuximab infusion went smoothly. Paul got in a good nap while I started to write this post. Then we were off to afternoon radiation, and home for the day.
Yes, I started this post last Wednesday, and it’s taken me so long to write it that we’re now only a day away from another long Wednesday. Paul’s not the only one who’s tired of this game.
By the way, if you have questions about anything we’ve written (or haven’t written), feel free to ask. I, for one, could use the writing prompts.