Another whirlwind week, but it ended on a promising note. Apologies for this really long "medical" blog!

On Monday, Marguerite drove me to Stanford for my apheresis (extracting my T-cells). When I got there, the nurses told me they couldn’t proceed because I didn’t have a required lab test within the last 24 hours. Don’t know why no one scheduled it, but… The nurses told me they would call my Stanford doc to get the authorization. Found out that she’s out all week. Next, they tried calling her nurse coordinator Leslie. She’s out because it was a holiday. It took a little over an hour for them to find an on-call doctor who could approve my getting the lab test in order for the apheresis to proceed. Success!

Then, the nurses had to put an IV in each arm to set up the apheresis. One arm for the blood going out to the machine, one for it coming back into me once filtered for T-cells. Unfortunately, it took 4 sticks with large needles (2 in each arm) to get it right. (I have good veins, but this time they rolled.) Ok, so I’m finally hooked up. But, I overheard the two nurses near the machine discussing whether to turn a certain dial up or down. They didn’t agree. I don’t know exactly what the dial was for, but the next thing they did was pull out the manual to check. I did see that there were photographic examples. Anyway, they got it figured out. I was really surprised when the apheresis was over after 4 hours, and saw that the plastic bag with my T-cells on the way to being frozen contained only about a cup and a half of my plasma/T-cells. Enough to work with.

On Tuesday, I had an appointment with my oral surgeon Dr. Krey in Orinda. He said that there was a slight increase in the amount of jaw bone exposure, and that the “thing” protruding from my front teeth is a gingival cyst, unrelated to my jaw osteonecrosis. The cyst could be “popped,” but best to wait it out as it might affect the jaw bone issue. As far as dealing with my current pain… He said he’s dealt with people who have jaw osteonecrosis, but very few have pain. He said it’s either no pain or a lot of pain. Once again, I’m in the minority. He recommended that I consider having bone scraping/minor surgery to deal with the jaw problem. I told him that I thought he said that any active intervention might cause the problem to get worse. He agreed, but said that it’s a risk that might alleviate the pain. He also realized that having this kind of intervention might compromise my planned CAR-T procedure. Dr. Krey advocated getting Stanford to find one of their oral surgeons who could work with the CAR-T team. I had already contacted my Kaiser oncologist last week to get Kaiser to authorize seeing a Stanford oral surgeon (i.e., pay for it). That authorization came through the next day. However, what remains to be seen is how all this would come together as far as my planned CAR-T schedule. It might delay it considerably if I have any aggressive treatment for the jaw osteonecrosis.

On Wednesday, another trip to Stanford. This time for a bone marrow biopsy. Because I elected not to have any pain meds other than a topical where the biopsy needle goes in, I didn’t need to have a driver. It went well. They thought I was very stoic. Interestingly, the nurse in charge of doing the biopsy told me that she is often involved in CAR-T procedures, especially the Carvykti ones. She thought my choosing Carvykti was a good decision. She reassured me that it typically goes very well, even though patients do occasionally experience Cytokine Release Syndrome which they have meds for. The other potential bad side-effect is Neurotoxicity which is characterized by brain swelling, confusion and tremors. Unfortunately, for this one, there aren’t good treatments other than waiting it out and hopefully the symptoms will dissipate.

On Thursday, my Kaiser oncologist Dr. Green was concerned about my low hemoglobin level. The normal range is 13-17, mine is 7.4. If it reaches 7 or lower, I’ll need a blood transfusion. For now I’m scheduled for blood draws twice a week to monitor my hemoglobin level.

On Friday, yet another trip to Stanford. This time, to see a Stanford oral surgeon. Dr. Gaudilliere was very competent. She immediately saw that I had a significant infection, treatable with antibiotics and a prescription mouthwash. She explained that the exposed bone wouldn’t cause any pain because that part of my bone is dead. However, because I have an infection, that’s what’s causing the pain. She further explained that because Stanford sees a lot of myeloma patients as well as patients with other types of cancer who have jaw osteonecrosis, they’re very accustomed to treating the problem. Oral surgeons in private practice or with smaller practices don’t have the breadth of experience with jaw osteonecrosis. Once the infection is gone, the jaw osteonecrosis will likely heal over time (i.e., a year or more). But, she definitely thought I didn’t need any bone scraping. So, for now it seems like my CAR-T procedure can proceed on schedule assuming that I no longer have a jaw infection. I’m feeling much more optimistic about having my jaw pain gone and the CAR-T going forward.

For the next few weeks, I'm back to my regular chemo infusion and meds until early April. I'm looking forward to a less hectic time and fewer drives back and forth to Stanford. Then, if all goes according to plan, the re-infusion of my bioengineered T-cells at Stanford will happen mid-April. That's when I'll be there for several weeks.

Our weather has been miserably cold. Yesterday, San Francisco broke a record low temperature. Although I wasn’t able to take photos, on my drive to Stanford I could see a lot of snow on the coastal hills and mountains. In 40 years, I’ve never seen them covered with this much snow.

No, this is not from Berkeley. This is a fairly typical winter scene of my family home back in Shorewood, Illinois. That is, before the 500 year flood came along and wiped out the house and a lot of the old town. The DuPage River is in the back of the house.