It’s Wednesday, 48 days ATN (After The News) and 8 days after infusion #1.
I feel pretty much normal again. Well, as in “normal” before the first infusion. I woke up a little before 8 AM, which is Not Normal.
You know you’ve been going to the dentist far too frequently when the receptionist recognizes you. The checkers at the Safeway I can understand (here comes the guy who comes in every day to see what’s been marked down at the deli), or the manager at the local McDonalds (Hello Mr. Medium Grilled Chicken Sandwich Combo No Mayo Large Drink). Or even the employees at L&L (no we still don’t have any roast pork). But the receptionist at the dentist? Hopefully I can stay away long enough that she’ll forget me 🙂.
But after a bit more than a month all the mouth work is done! Two root canals, two crowns (only one on the same tooth as the root canals), and a patch up on the implant crown where the post hole was incorrectly filled by my old dentist. Dr. B at the Palo Alto Dental Foundation is used to dealing with difficult patients like me (and my neighbor – who apparently tried to walk out of the office mid-procedure) and did the delivery of the two crowns painlessly. I wasn’t always a difficult patient but had a couple really bad experiences with a new dentist at the place I used to go to. I won’t go into it here, but a bad dentist is A Really Bad Thing and after 15 years I stopped going to that practice.
The medical oncologist had also wanted me to get a dental cleaning prior to starting chemo, but we barely got the first part of the two-step crown done in time. So hopefully nothing happens before its safe for me to get a cleaning again. In case you’re wondering, I’m sure the oncologist and dentist are really good friends. They’re both up-with-the-sun types after all and work within a few blocks of each other. But during chemo white blood cell and platelet counts can drop, so there are concerns about infections and bleeding. Aside from staying away from people who want to stick pointy things in my mouth I’ve also been advised to use a soft bristle tooth brush (I’ve never heard any reason to use any other type so why are they sold?) and also not to use dental picks (which, um, I am for now since they do a much better job than floss). And because I’m one of the lucky chemo patients getting Oxaliplatin there’s the additional complication of enhanced cold sensitivity, which extends to the mouth and throat in addition to the hands and feet. If I need an emergency root canal during chemo I’m sure there’s some way to handle it. Maybe they just sedate me until the regimen is over? I’d be ok with that!
So now we can get back to focusing on that tumor at the other end of the GI tract…
That not usual jaw pain
When I mentioned the jaw pain to the infusion nurse she said it was normal for Oxaliplatin. Well on Monday the medical oncologist’s nurse tried to call to check in and see how I was doing. Unfortunately I was on a call with a colleague where we were bemoaning the choice of a streaming protocol (DASH) as the foundation of ATSC 3.0 broadcast TV. (Don’t worry if that last sentence is gibberish to you. I’m just ranting in this blog since it’d be unseemly to do so in my professional blog.) After calling the oncology department and being on hold for several minutes I figured I’d just message the nurse using PAMF’s online system. I got a reply back rather quickly, but in a somewhat cryptic code that used a lot of abbreviations and fragmented sentences. After pulling out a decoder ring I think she said, among other things that the jaw pain was “not usual.” I was wondering if she (or the decoder ring) had by accident dropped in a “not.” So I wrote back asking if this was “not usual” is it something I should worry about? She clarified that the usual jaw pain associated with Oxaliplatin is spasming that happens within 15-30 minutes of the infusion being started. So apparently what I’m experiencing, which feels more like like blocked parotids, is really not usual. Except that I’ve found other people given Oxaliplatin mentioning the same effect online. I guess they’re not usual too. Hmm. I wonder if FOLFOX has been tested on vampires? Oh well, I’ll ask the medical oncologist when I see her on Tuesday. At this stage, a week and a day after the infusion, the jaw pain is more of a mild sensation and not hindering my ability to eat.
Does blood count?
Another thing I asked the nurse is if my blood counts would be adversely affected. With the COVID variants running around its something I’m wary of. She said that the white blood cell counts could be affected but its usually not a problem and the counts rebound without having to use neupogen or other drugs that stimulate white blood cell production. If the decoder ring was operating properly it appears that about 10 days after an infusion is when the counts could reach a low. I have lab work the day before each infusion to monitor counts so we’ll see how those look next Tuesday. (Everything’s pushed out a day next week since Monday is Labor Day. And apparently no one labors on Labor Day.)
MICHAEL, IT IS SO NICE TO HERE FROM YOU AND KNOW HOW YOU ARE DOING. UNCLE PAT GIVES YOU HIS BEST AND SO DO THE REST OF THE PAT VICTORINO FAMILY. LET US KNOW IF YOU NEED ANYTHING FROM KAUAI. I VAGUELY REMEMBER HUNTING FOR SOME LI HING MUI KIND OF THING QUITE AWHILE AGO. LET US KNOW.