It’s Tuesday, 40 days after The News and the day of the first infusion!
I crawled out of bed at 6:30 this morning to make the 8:00 infusion session. This is even worse than the surgeon’s 9:00 appointment in Burlingame, when I needed to wake at 7. I wonder if they’re running some sort of calibration regimen to see how early they can get me in before I collapse during the appointment. I seriously considered skipping a shower to get a few more minutes of shut eye – that’s what medical people get if they want to see me that early – but as you’ll read later I’m glad I didn’t do that…
It seems all oncology-related functions share the same reception area at PAMF Palo Alto. It was the same place I went to for the medical oncologist new patient visit, the radiation oncologist new patient visit, and the chemotherapy teaching session. But I have to say that the infusion center itself is a nicely appointed area. Unlike the windowless rooms all the other visits were in, the infusion center has lots of windows letting in natural light. It’s a fairly open space curtained off into individual “rooms” for each patient.
The nurse knew this was my first infusion and went over key points. Wash hands, social distance, avoid crowded areas. Wash all root vegetables. Don’t eat raw seafood (she singled out sushi – fortunately I’m not a fan of raw fish sushi and much prefer spam/avocado sushi, or as a fallback futomaki.) There were some practical things that weren’t covered in the infusion teaching session. Like that for the first infusion they recommend having someone pick you up, just in case you react badly. Fortunately PAMF is only a few miles from home and Uber or a medical ride service could get me back home if JT or one of my neighbors (who also offered the occasional ride) aren’t available. When I asked the nurse what I should do with the car in that case she said there wouldn’t be a problem with it staying in the garage. The way she said it I don’t think it was the first time she’s heard that question. I also wonder what happens if you drive to urgent care or the ER and end up being transferred to another facility…
The other omission in the teaching session is that there’s a dress code for infusions: you need to wear a buttoned-down shirt (but shorts are ok. This is Silicon Valley after all). There’s actually a practical reason for the buttoned-down shirt: it provides easy access to the port, which is on my upper right chest. Not so easy with a t-shirt, though since I happened to be wearing a loose-fitting one the nurse thought she could work with it. I opted to switch into a gown anyway.
They started me off with a saline solution “to keep the vein open” followed by a prep solution containing Zofran (anti-nausea medication) and steroids. Then the two FOLFOX drugs oxaliplatin and folinic acid were administered via IV for a couple hours. After that was done we had to wait around for a pump to be delivered. Eventually the pump showed up and it was connected to a bag of the third FOLFOX drug, fluorouracil, which will be administered over 46 hours.
When the oxaliplatin/folinic acid was to be administered and again with the fluorouracil a second nurse would appear and the two would go through a routine of asking my name and birthday, then once nurse would read to the other the instructions for administering the drug and the second nurse would confirm the settings on the IV drip/pump. Then the two nurses would switch roles. For the second round with the fluorouracil I asked them what happens if I give a different name? The nurse said well then someone else would get my drugs. I paused then asked which patient is getting the chocolate infusion? She looked at me and said she was! I didn’t think it wise to ask for her birthday so she got to keep the chocolate for herself. At least this time.
After the pump with fluorouracil was hooked up they kept me around for half an hour or so to ensure I didn’t have any adverse reactions. The pump came with a fanny pack type bag which the nurse originally set up as an over-shoulder sling, but when I got home I switched to a waist band. It’s been way too long since I went around with a messenger bag tugging at my neck.
After the 30 minutes of observation I was free to go. All told it was about five and a half hours at the infusion center, somewhat longer than the three hours I’d been expecting but all in all a not unpleasant experience. I’ll be back on Thursday (late!) morning so that the pump can be removed.
Yet another thing that nobody mentioned previously was that showers and baths should be avoided while the pump is connected. The nurse suggested I could wipe down with a towel, but since I had a few hours on my hands at the clinic I started looking for body wipes. This one from Amazon seems promising and I ordered it for delivery tomorrow. On the way home I also stopped by Target and got a pack of DUDE Wipes just in case I’m up to working out tonight. (These are intended as toilet paper replacements but can also be used as a full body wipe – Target didn’t have the larger body wipes.)
One of the things the infusion nurse emphasized was that oxaliplatin tends to increase cold sensitivity, so I need to be careful when touching anything cold (like taking things out of the freezer), and might want to wear a cap and scarf if I go out in the morning. (This is yet another reason why waking up early in the morning is A Bad Idea.) Breathing in cold air is apparently also problematic. The effects should be most pronounced for four or five days after an infusion, so hopefully things will have subsided long before the dental crown delivery in a week and a half. That’s a few days before the second infusion. The nurse was originally concerned about that but less so after I mentioned that it had been cleared by the medical oncologist. (I’ll be meeting with her the day before the next infusion, so she’ll get an earful if it was a problem! I’m also thinking this is an excuse to have some local anesthetic administered for the crown delivery. Given a choice I’d go for sedation, but my current dentist doesn’t work with anesthesiologists. Yes, I’m a wimp when it comes to dentists – stick as many needles and ports in me as you want, but I prefer to be out for any dental procedures! It’s probably a residual instinct from that neanderthalensis vampirus side of me – they had an innate aversion to people who wanted to file down their incisors.)
[It’s 10:35 now and so far I don’t have any issues eating – dinner was a Safeway Deli turkey pot pie with riced cauliflower – though my fingers get a pins-and-needle feeling if I grab items out of the freezer. This was something the nurse told me to be cautious of, but I take after Jasper the (ever-boundary-testing) Jack Russell Terrier. I’ll keep trying it now and then. Just Because. At the moment it’s not too bad and subsides quickly, but my next project may be a robotic arm that fetches the frozen cauliflower from the freezer…]