Another series of adventures or, perhaps, misadventures... On Sunday morning, I started having double-vision. I've never had that before so it was pretty startling to wake up to. I went through the day thinking it might be related to my head cold, that it might get better as the day wore on or maybe dissipate after a good night's sleep. No dice. On Monday morning I messaged Dr. Green my Kaiser oncologist to let him know what was going on. He called me to let me know he made an appointment with Sam the nurse practitioner to check on my double-vision as well as setting up a monthly antigen infusion.

Later Monday afternoon, Dr. Sidana at Stanford called me directly at home at 3 pm. She asked me how quickly I could get over to see her that afternoon. Figuring on rush hour traffic, I estimated I could get there by 4:30 pm. She agreed to wait for me. Because I was so rushed, I didn't have much time to decide. I couldn't get a hold of anyone to see if they could give me a ride so I just went for it. I kept my left eye shut most of the way so I didn't have double-vision. Luckily, I can shut my left eye much more easily than my right eye -- plus my right eye is my stronger eye. Fortunately, there was little traffic so I made it in a little over an hour.

When she examined me, Dr. Sidana explained that about 5% of CAR-T patients experience double-vision and other more serious side-effects like face drooping or minor stroke. This is especially likely if a patient like me has experiened neurotoxicity during the CAR-T hospitalization. I seem to have a knack for ending up on the wrong-end of the bell-curve. (My record so far is being among 1% or less of multiple myeloma patients who develop jaw osteonecrosis.) Dr. Sidana confirmed that it was my left optic nerve that was affected, but no other neurologic symptoms for now. She recommended starting on the steroid Dexamethasone twice a day as soon as I could to reduce the inflammation of the optic nerve. I happen to have a stash at home left-over from my cancer treatment days before CAR-T. Dex is one of the standard meds that are included along with many other cancer regimes. I could start on these that night when I got home and pick up the prescription later in the week.

Dr. Sidana also seconded Dr. Epstein's recommendation that I start getting monthly antigen infusions. It's a four hour infusion. Unfortunately, Kaiser couldn't schedule one until August 15. Dr. Sidana felt this should happen much sooner so she will talk with Dr. Green at Kaiser to see if it can be moved up. Otherwise, she said they would do it at Stanford. (I'm assuming Kaiser has to give permission which gets me back into the Kaiser-Stanford duel.) I'd rather not drive to Palo Alto for a 4 hour infusion since that would take up most of my day and then some. Not to mention dealing with double-vision. This time, I'll definitely plan to have someone else to drive me if I need to go to Stanford. Still waiting to hear how this turns out.

Progress on the coughing front. I'm coughing much less and very little phlegm. I'm attributing this to the antibiotic Dr. Epstein at Stanford put me on. Even though I'm technically over the pneumonia, there are residual effects that may include bacterial and/or viral infection. Dr. Kwaan the Kaiser pulmonologist is sending me an aerobika flutter valve to help clear the mucus in my lungs. My living room coffee table, dining room table and kitchen table are starting to accumulate pill bottles, pill organizers and other medical tchotchkes. Maybe a garage sale when this is all over.

On Tuesday, Dr. Liang a Kaiser head and neck surgeon, let me know that he needed me to get a CAT scan of my sinus area before he could see me on Saturday. The soonest appointment I could get at Kaiser Oakland was August 15 which meant I would need to re-schedule with Dr. Liang. However I dug in and called Kaiser Richmond. Success for Wednesday! Because it was only a sinus scan, it was a Quick trip. (That's an inside joke with my friend Polly who drove me.) Driving more than a few familiar blocks is about as much as I'm comfortable with right now given my double-vision. Also, thanks to Chuck who drove me to my appointment with Sam at Kaiser Oakland earlier in the day. Sam confirmed the double-vision diagnosis and etiology. He's making an appointment with the optometrist to check my vision and scheduling an MRI to scan my brain. I'm hoping there's some gray matter still left in there.

The steroids help with my double-vision, but it's a temporary fix that only lasts a few hours before the double-vision returns. More than two doses a day and prolonged use is not recommended and can have dangerous side-effects. More side-effects I don't need. I'm hoping yesterday's CAT-scan and my exam on Saturday by Dr. Liang will deal with my lack of taste and smell. Now, not even vinegar. It's becoming a bit of a battle to cook and eat since everything pretty much tastes the same. Like nothing.

Not exactly showing double-vision, but these are the closest photos I could come up with: Monkey Flower (Diplacus aurantiacus), Las Trampas Regional Wilderness; Blue Oak, (Quercus douglasii), Henry Coe State Park.