Whew! So much is happening very fast.

Many of you have been texting, emailing and calling me. Often, you want to know what you can do.

I’m telling everyone not in the immediate area not to make any plans to come out and visit me later on in September or October – even if it’s for a short time outside on my deck. While I appreciate the effort, it’s likely won’t be home or available.

This coming Wednesday (September 13), I will have a PET scan which will show how widespread the myeloma cancer cells are throughout my body. The previous scans concentrated on my head – hence finding that the cancer has invaded my brain skull. The doctors will compare my previous PET scans with the newest one. Still being scheduled is a spinal tap (aka lumbar puncture) which will show whether or not the cancer has also invaded my brain. I'm very clear that if I start having cognitive issues, I'll resort to Kaiser's End of Life program which I'm applying for. I went through it with Tim and it was a huge help and relief. Since then, the program has been simplified and made more practical and user-friendly. I'm also hoping that I can connect with the hospice nurse who worked with Tim. She was terrific and was a huge comfort to both Tim and I. I don't know if she's still with Kaiser's hospice program, but any of the other hospice nurses I've been in contact with are well suited to the task.

The doctors anticipate that my cancer will indeed have spread, and fairly immediate action will be needed. It’s very likely I will be hospitalized at Oakland Kaiser on or around Friday September 15 if I choose to go ahead with the treatment.

Talquetamab (Talvey) just got approved within the past two weeks and is the last resort for me. Taquetamab is a mouthful, but so are most of the other new bispecific antibody treatments. I think I could come up with drug names that are a little easier to say and remember. Bispecifics were the other options I had instead of CAR-T. In general, bispecifics are another alternative as far as getting my T-cells to combat the cancer. Unlike CAR-T, bispecific antibodies are a treatment that requires ongoing monitoring. I’d be in the hospital for 10 days, then sent home if I survive the often severe side effects ranging from Cytokine Release Syndrome to Neurotoxity. Then, they would do daily checks on me at home and I would go in for weekly bispecfic injections for the rest of my life. I have options not to start the treatment or stop it at any time. For now, I’m going ahead with treatment.

Although I still have coughing as well as total numbness on right side of my face, tongue and forehead, I’m not in much pain. I have a hard time reconciling how I’m doing (cooking, gardening, exercising) with what’s going on with my insides. It reminds me of when I first got diagnosed with multiple myeloma back in 2015. Although the tests then showed that I was very anemic, I really didn't notice anything until the diagnosis came through. Of course, since then there have been a few rocky moments like when my back broke, jaw osteonecrosis developed or when I had to have a stem cell transplant in 2017.

As far as what I need… I’m pretty well set for now. I don’t need any food or rides. When I get home, I shouldn't need a caregiver 24/7 unlike when I was released from the Stanford hospital and had to stay nearby for a few weeks. Thanks again to Eva and Polly.

I was trying to think of what else folks can do for now besides sending me their prayers,thoughts and good vibes. Texting, emailing and phone calls are always welcome although I may not be able to respond. Facetime or Facebook Messenger are also possible if I can manage it. You can also send me updates on what’s happening with you – even if it doesn’t seem that newsworthy or exciting. Photos from your past and present are also welcome. Even a good cartoon.

This is me sitting on the edge of the lake at Fourth Recess in the Eastern Sierra. I'm so glad I got to do these kinds of things when I could.