Well, the pharmacist and I thought that we had pinned down the culprit of lamotrogine causing my rash. I titrated off of it, and I took my last pill last Wednesday. So….maybe there is something still in there since I’ve been taking it for over a year??

Looks like the next explanation could be the Dexamethasone that I get on Day 1. My pre-meds include that and Benadryl, so potentially the Benadryl is fighting off the reaction until Day 2? Oddly, the rash heats up around noon. It seemed really connected to the medication I was taking at 11:30, because I would start the jawline and under chin redness about 10-15min after meds. But this time there were no 11:30a.m. meds. I noticed the heat radiating off my face at 1:30p.m., so the jawline rash probably started around that 12pm time again. I’m also having trouble understanding what the definition of a rash is. The NP says it looks more like redness, which is true. Nothing is raised or really itchy. It a red hot heat the makes its way up my face. I did tell her that when I did my self-designed polyethylene glycol allergy test of dipping my finger in Miralax and putting that in my mouth the reaction was a similar bright warm redness on my neck and mostly left cheek. However, that was easily handled with a single Zyrtec.

Maybe I’m having an allergic reaction to the chemo med in the pump: fluorouracil. I’ve been instructed to take daily Zyrtec and go to the ER if I start to feel a tickled or tightened throat. I’m thinking the daily Zyrtec isn’t going to do much for this rash, so I’ll likely have to escalate to Benadryl.

Once I have the pump removed, the rash usually dissipates by Day 4. Which without the lamotrigine in the picture, it seems to leave the Flourouracil allergy the leading suspect. I guess we manage that with Benadryl, until we don’t?

Aside from the rash, I still have the certain level of ick, but I feel better than yesterday evening and night. First bite and cold sensitivity make eating and drinking an endeavor. I’m learning to waste my first bite on something on something small, then I can enjoy my good first bite :) Room temp water is still too cold, so I invested in a bottle warmer. And oddly I feel like I’m getting a first sip issue. My first sip of water tastes metallic and yuck, but after that it tastes okay?! Weird.

Yesterday, I joked with my infusion nurse that I was ready for the poison. But then I acknowledged it’s also medicine. I took the moment recognizing that something can be both poison and medicine, a hard dichotomy to hold. Thankfully, I’m still in the world of the medicine side of things being more beneficial than the impact of the poison side of things. It seems many things in our current world are requiring that we evaluate whether the medicinal side of things outweight the poison side of things. Election, cough, election. Of course many other things, but that one is top of mind at the moment.

Anyway, I am thankful for my toxic medicine, even if I feel like I have a bad flu every other week, and a week of recovering from that flu every OTHER week. I can’t say continued pulmonary embolisms will be appreciated though.


Enjoy the progression of my rash and my lopsided nostrils.