More symptoms, more tests, more phone calls and texts to and from Stanford and Kaiser, more video and in-person appointments, and more pill sorting. It’s a wonder I can get anything else done like cooking, gardening, running errands, exercising, or just relaxing. Thank goodness my koi mostly take care of themselves.

The big news is that the right side of my face has been very numb for the past two weeks. It’s been numb across my right ear, cheek and chin, going half-way down the middle on the right side of my tongue. It feels like a lidocaine shot a dentist might give to numb pain—except it hasn’t worn off. I also have a pretty constant earache and can’t hear as well on that side. When I’m listening to tv, I get echoes of the dialogue or music in my middle ear.

Dr. Liang, my Kaiser head and neck surgeon, thinks it’s a middle ear problem, possibly related to a nerve problem or possibly my sinuses. He’s scheduled a CT scan to see if it can be sorted out. Dr. Green at Kaiser thought it could be “numb chin syndrome” which he said was rare but found in patients with multiple myeloma. Dr. Sidana at Stanford didn’t think so. She said it’s part of the same post CAR-T symptoms that happened with my double vision: an inflamed or infected nerve. Apparently, this happens in less than 5% of Carvykti patients. However, the double vision problem was with my left eye. The current problem is on my right side. Dr. Sidana pointed out that it’s very rare to have this kind of nerve issue on different sides of the head. Usually, this nerve problem is limited to one side and to a small spot or two. Not the entire side of the face. Once again, I seem to have cornered the market on unusual symptoms.

When I saw the Kaiser neurologist Dr. Samman yesterday, he diagnosed four separate cranial nerves that are affected: my left eye, right forehead, right face and right hearing. Although I think my double vision has greatly improved, Dr. Samman saw evidence that my left optic nerve was still affected.

The not so good news is that Dr. Samman thought my symptoms were either from a stroke (cranial nerves radiating from the back of my head) or that the myeloma cancer cells have surrounded my brain. He wants to do an MRI asap which can confirm what’s happening. Sheesh! However, Dr. Samman admitted he doesn’t’ know anything about CAR-T. So, when I relay this info to the Stanford team, they may have other explanations.

I’m still coughing throughout the day, still producing phlegm and getting very tired of this routine. The coughing is decreasing, but not fast enough for me. Dr. Epstein at Stanford is confident in his diagnosis of my cough: Protracted Bacterial Bronchitis. (This is generally affects young children -- except for adults with severely compromosed immune systems.) He thinks 30 days of antibiotics should help. I’m half-way through. Epstein explained that antibiotics have to tunnel their way through the tiny bronchial tubes to get to the offending bacteria. It takes time for the medicine to confront those nasty bacteria. A short term of antibiotics doesn’t often work in these cases because it doesn’t reach the affected area. He’s also concerned that my sinuses may be contributing to the coughing and lung difficulties. That is, mucus from the sinus drips down and aggravates the bronchi. He wants my neck and surgeon Dr. Liang to do a physical exam rather than the scheduled video exam. That’s being scheduled.

Overall, my blood work shows that the CAR-T outcome is progressing, with the important markers showing I have a partial remission. Hopefully, this trend will continue downward to the point where I’m actually in remission–i.e., no detectable cancer cells except one in a million. There isn’t enough current research data to know how long this might take—if it does take.

Finally, I’m gearing up to get vaccinated within the next few days. All or almost all my previous vaccinations were wiped out during the CAR-T procedure. This leaves me extremely vulnerable to any and all viruses -- from COVID to flu to common colds and more. Even measles and mumps. I was concerned that the latest news reports tell people to hold off until the newest COVID vaccination comes out in mid-September. But, my Stanford and Kaiser docs tell me I should get what’s available now including a flu shot, then get the newest one when it comes out. Just to underscore how much isn’t known about all this, they’re not sure which of my previous vaccinations like the pneumonia are still active. So, they're recommending I get the pneumonia shot again just to be safe. They want to wait on other vaccinations until some of my symptoms settle down.

This is a photo I took in the Sandia Mountains outside Albuquerque a few years ago. A local newsman saw me taking the photo, and asked if he could use it for the front page of their newspaper. I think this is my only published photo.