PIK3R1

It’s been a peaceful weekend. I’ve had to field fewer phone calls since many medical offices are closed. I had to spend a few hours with family on Thanksgiving, but other than that I’ve mostly been able to rest. Symptom rundown:

The start of my treatment has gone well. The visual symptoms that kicked into high gear when I switched to Eliquis for anticoagulation just over a week ago have finally petered out. That includes:

• migraine aura – A shimmery dot in the center of my vision that expands over a half hour into a circle until it has finally expanded out of my field of vision. I first experienced this in the Spring before I was diagnosed with cancer.
• a grey or lavender blur in either my left or right eye – I first had these after brain surgery last year and I have never figured out what it is, but I can’t imagine it’s something good
• shooting stars or worms – Well, I still have these, but they’re infrequent now

Don’t tell my team this, but on Wednesday evening after my first day of treatment I also had double vision for 7 minutes. You can’t tell them because they could stop treatment. It’s a stroke symptom. We all know it’s caused by the cancer. That’s what doctors have said for my previous issues. But once you’re on treatment, sometimes people will blame the treatment instead. Even if the treatment is the only thing that can beat back the cancer that is causing this crap. So, I’m just keeping that bit quiet for now.

The day after I started treatment, i.e. Thanksgiving, I ate a tortilla chip. I’ve done this many times before, but this time afterwards it felt slightly sore near the tip of my tongue and the roof of my mouth right above it. The roof of my mouth felt better the next day, but the funny feeling on my tongue is still there into the fourth day now. Maybe some of the salt water mouthwash that people talk about will help. I always heard about the possibility of mouth sores with chemo, but on the tip of my tongue? Why do all my symptoms have to be so weird?

I had a vague whiff of nausea on Thanksgiving day but nothing that stopped me from eating a full plate of food and dessert.

The tinnitus already kicked up a few notches from the switch to Eliquis in the week before starting treatment, so I’m not sure if there’s been more from the treatment also. Probably. But either way it’s still manageable. If I had decided on the cisplatin / gemcitabine / avastin combo recommended by Big Cancer Center, I’d be suffering now for sure. (Of course, on Friday my husband was asking me “Do you hear that high pitched noise in the kitchen?” He knows I can’t hear a lot of high pitched noises anymore, but I guess he forgets. Arghh!)

I have recurrent headaches since switching to Eliquis also, but they’re pretty mild.

The main thing that has kept me worried is that Friday I got a notice on my fitness tracker that my heart rate had dropped below 50 during the past ten minutes. This is the same notice that scared the crap out of my last year when I was on corticosteroids. At that time I had just fallen asleep when my watch woke me up, and I was too terrified to go back to sleep for hours, fearing that I would never wake up. You know the end story for that one. I did wake up!

My watched buzzed at me twice on Friday and then twice on Saturday. Somehow it hasn’t buzzed at me overnight yet. I need to make it just one more day to get to my oncology appointment. I just need to wake up tomorrow. I’m not dead yet. Things can still turn out okay.