Ah Well. On to Plan B.

A few days ago Jon got a sore throat and other cold symptoms and by today he had a cough and a runny nose, but no fever. So we knew that the plan could change. But we got up very early and drove with all the other northbound commuters to Baltimore. We got to Hopkins just a few minutes late and did not feel flustered because his first appointment was at the lab.

The first time we walked into this building (the Weinberg Cancer Center) was 16 years ago. We have been here many times since then. Many of the routines are the same as always, but they have added a weapons check and the entrance path through the lobby is about as convoluted as it can get, given that there is a big open space  after you enter through the revolving doors and a receptionist's desk is the only destination.

When Jon went in to get his blood drawn, he pointed out his PICC line. The technician asked if he also had a port -- yes. And Jon told her that tomorrow he is supposed to have a central line put in. She said that was the first time in all of her 22 years of working there that she has seen that.

We took naps in the waiting room while we waited for our appointment with Dr. Imus. We haven't seen him in person since June of 2024 but we have had video meetings every few months or so, and we feel that he knows Jon well by now. As soon as he heard that Jon has a cold, he said he wasn't sure we could proceed tomorrow. He said he would consult with others today and let us know, but it could be a bad idea to try to collect cells that might have a virus associated with them -- the CAR-T cells might not grow correctly. By the end of our appointment, he had decided by himself that we should wait until Jon's cold goes away.

Alissa joined us by phone and asked two questions: how functional does someone need to be to have this treatment and do you plan to do any sort of bridge therapy while we wait for the cells to grow? Dr. Imus answered both questions to Alissa's satisfaction. He said a patient needs to be able to walk, move around, not be hospitalized, and his myeloma needs to be at a low level. Jon's blood levels are good enough now and he is in good enough shape, except for the cold. The bridge therapy would depend on how active his myeloma is, but assuming we need to do something, he recommends a combination of Pomalyst and something else I can't remember. He says they are not very effective but they might do the job and they have very few side effects.

He was sympathetic and appropriately shocked at how much weight Jon lost on that other therapy, and he correctly said, "we almost killed you with that." But the good news is that terrible drug also knocked the multiple myeloma back to a low level. 

I asked him if taste buds ever recover from such trauma (in Jon's case, he had two different therapies in a row that are known to affect taste) and he said they do. He said we don't know much about taste buds, so he couldn't say what would happen, but they do come back eventually.

Anyway, we don't have a new schedule yet but they will check back in a week to see how Jon is doing. Dr. Imus sent him to a nurse to get swabbed to see what virus he has, out of curiosity. That was another hour in another waiting room, with lots of other familiar-looking cancer patients.

We came home and resumed our normal activities. If everything gets pushed back a week or so, that's complicated but not impossible. We have been down this road many times before and have experienced setbacks all along the way, so this feels fine. Disappointing but fine. We have more time to get Jon even stronger and healthier. He probably got this cold while reading books to the little girls. He knew it was a risk, but it felt like the right thing to do at the time. His immune system is demonstrably compromised -- and it doesn't help that he was undernourished for so long. He continues to gain weight every day, so he is doing his job with the eating. 

Jon has appointments at Kaiser just about every day, mostly in preparation for this cell therapy. Just like the last few times, they will check his heart, they will do a PETscan, they will do some kind of X-ray. And tomorrow, as a sideline, he has an ultrasound to check out some recently developed soft cyst thing on his back. There is no tissue or fluid or bone that will escape some kind of imaging in the next couple of weeks.

Jon looks like himself again, the skinny version. He has come a long way in the last three or four weeks. Thank goodness.