It’s Tuesday, 26 days since The News.
The people at PAMF have apparently realized that calling me at 7:30 in the morning is causing significant harm. They have instead switched to calling me while I’m taking a shower. Exactly how they know when I’m taking a shower I’m not entirely sure…but maybe there was a little extra in the MRI contrast dye IV…
Caught in the gears…
The message has apparently not made it to the chemotherapy infusion folks – they stuck a 9:30 infusion appointment on my calendar for next Tuesday. Maybe the PAMF teams don’t share sleep and shower-related information, and the infusion team needs their own monitoring devices.
The infusion appointment was something of a surprise – I hadn’t heard from the medical oncologist since the new patient visit, though she did mention she was going to order the chemo drugs in preparation. I don’t recall getting any message from PAMF’s online system about a new appointment. And of course no one checked whether the date and time would actually work. Like whether I might happen to be fast asleep at the time. (If they would just board me at the clinic they could do infusions when I’m sleeping, but they apparently don’t like my company that much.)
PAMF appears to be a well-oiled machine but perhaps their patients get caught in the gears once in a while. Oh well. I followed up at the teaching session and indeed things aren’t running as smoothly as they normally do. The nurse who normally works with the medical oncologist is on vacation and others are filling in. So things broke down a bit – like letting me know the tumor board already happened (I thought it was today, but it was last week) and why wasn’t I already scheduled for a mediport?
The Infusion Teaching Session
Everyone else is going back to school and apparently so am I. At least for a day: today was the “infusion teaching session.” I have to hand it at PAMF – they really do a lot to prepare patients for what’s to come. They’re not just about running tests and sticking needles in you.
The teaching session was all about making sure I knew what would happen during the systemic chemotherapy and how to care for myself during that time. The medical oncologist had talked about it and I had done a little bit of research online. But nothing beats going over it all in a structured manner, which is exactly what the nurse did.
First the overall process. There will be eight infusions spread two weeks apart for a total of 16 weeks. At each infusion I’ll spend two to three hours at the clinic. While there they’ll administer one of the drugs via IV and also fill a pump which will administer the other drug over a 48 hour period. One to two days before the infusion I need to stop by the lab for bloodwork. I also visit with the medical oncologist (except for the first infusion – I got the impression this a quick check to discuss progress and any side-effects I may be having. Hopefully I don’t have any before first first infusion, though I think chemo brain is already starting to set in.) Then, three days after the infusion I return to the clinic and they remove the pump. So it makes sense why they want the infusion to be on a Tuesday – Monday lab/doctor visit, Tuesday infusion, Friday pump removal. The only other day that would fit the routine well would be a Friday infusion (Thursday lab/doctor visit and Monday pump removal). However why the infusion needs to be at 9:30 is beyond me…
We then went over a guide that covered chemotherapy in general. It went over nutritional guidelines to reduce side-effects and promote healing, how to deal with taste changes, what the various blood tests were for, checking for/managing infections, and other useful bits of information. It also had sections for dealing with fatigue and nausea, peripheral neuropathy, and various other side-effects. They even had two pages dedicated to showing you the best way to wash your hands (which everyone probably knows due to COVID education), as well as sections on flu and COVID vaccinations
Supplementing the guide was additional information specific to the drugs I’d be receiving – Fluorouracil, Leucovorin Calcium and Oxaliplatin.
While having all of this in written form was great, the teaching session was quite helpful since there were extra bits of information the nurse provided and I could ask questions (Are side-effects cumulative? – some are some aren’t. If I develop peripheral neuropathy does it resolve in weeks to month, or is it permanent? – weeks to months, rare for permanent damage. Are you sure I won’t lose my hair? I’d really like to. – you can get a haircut. Can I eat chocolate? – yes 🙂.)
Lastly was a shopping list of supplies and medications to manage the side-effects. Two nausea medications were being sent to my pharmacist. The remainder of the “chemo kit” could be obtained off the shelf at the local Target.
The nurse was careful to point out that the side-effects listed were all of the known side-effects that could happen – kind of like the drug warnings you see on cough syrup or aspirin. This became obvious when we got the section dedicated to talking about hair loss (and how to get insurance to pay for a wig. Really? Insurance pays for a wig? Can I file a claim for a bald cut?) Exactly which side-effects I might have and their severity seems to be a toss-up (perhaps literally if the anti-nausea meds aren’t sufficient…). But its best to be prepared in case they do occur and know the ways they can be managed. While I’m known to “tough out” a cold or flu on the theory it strengthens my immune system, I’m more than happy to take the easy way out this time.
I suppose I’ll be graded on this teaching session by how many times I throw up during chemo.
There was also some discussion on dental work and cleanings. As those of you following along know, I had a root canal recently and need to get a crown done for that tooth (as well as another root canal tooth that never got a crown). That appointment’s on the 20th – after the first infusion – and delivery of the permanent crown will probably occur the following week. I told the nurse I really can’t move up the date since the 20th was the first available appointment (and had PAMF checked in before scheduling the infusion I could have let them know of that…) The nurse asked for the name and phone number of my dentist and I think was planning on intervening. As it turns out the medical oncologist is ok with the crown work and delivery. The concern apparently has to do with bleeding – clotting can be affected during chemo – and maybe something to do with irritation. Biotene is on my “chemo kit” shopping list.
It was another enjoyable visit and the nurse’s cheerful demeanor set a wonderful tone for the session. We even spent a couple minutes talking about Caper the Cancer magnet – and how she provided her own “cancer teaching sessions.”