September 2, 2026 — 5:55 a.m.
I’ve been awake since about 3:30 this morning, thinking back over yesterday — the doctor visit, my third MOGA infusion, and especially one small part of the examination that seems much bigger in the middle of the night than it did during the day.
Before the doctor came in, I spent quite a bit of time talking with the PA and asking some of the questions that have been building up since treatment started.
A lot of my questions were about what happens from here. How and when will we really know how well MOGA is working? What will determine the next treatment step? How soon do we start thinking seriously about what comes after MOGA, including radiation and ultimately a possible stem-cell transplant?
The answer I heard repeatedly, in one form or another, was that it is still very early. There simply isn’t enough information yet to know what the next treatment steps will be. Right now the job is to continue MOGA, watch how my blood and skin respond, follow the disease over time, and make those larger decisions when we actually have enough information to make them intelligently.
As I understand it, the current MOGA treatment plan is five weekly treatments, with the fifth beginning the shift into every-other-week treatment. After that, treatment continues every two weeks for up to about six months unless remission comes sooner. Flow cytometry will be checked every couple of months to monitor what is happening in the blood, and a repeat PET scan is expected at around the three-month mark to see how the lymph nodes and other areas are responding.
That is not an entirely satisfying answer when you want to know where the road leads, but it is probably the only honest answer at this point.
We also talked about some of the more immediate things I have been watching — the remaining skin issues, my occasional low overnight oxygen readings, and some gastrointestinal problems — along with the testing and monitoring that have now become part of everyday life.
Then the doctor came in and examined me.
Most of the visit was reassuring. But there was one moment that has stayed with me.
While examining the left side of my neck, she felt something that concerned her enough to wonder whether there could be a mass pushing outward from behind the muscle. She did not say that there was a new growth, and I still think what she was feeling may simply have been a very tight muscle.
But she was concerned enough to tell me to monitor the area and contact her if I begin to feel a lump there.
That instruction is probably the best measure of how seriously I am taking it. I don’t think there is necessarily anything there. I certainly don’t know that there is. But it was enough of a question in her mind that she wanted me watching it, and that makes it difficult to completely dismiss.
After the appointment came Infusion #3.
And thankfully, that part of the day was almost uneventful — exactly what I wanted.
The infusion went fine. In fact, I think I felt better afterward than I did after the second infusion. No repeat of the ordeal that followed Infusion #1. I was able to leave, go home, have dinner, and go to bed feeling pretty good.
My good friend Mark picked me up and drove me home. He stayed for a couple of hours, and we did what old friends do — sat around and talked. Just good old-friend conversation. There is something wonderfully normal about that in the middle of something that is anything but normal.
Andrea is in Boston on business, so she wasn’t here yesterday. She gets home Wednesday night, which I am looking forward to.
So, taken as a whole, yesterday was actually a pretty good day. The treatment went well. I felt good afterward. I had dinner, enjoyed time with an old friend, and went to bed.
And maybe that is worth emphasizing.
After what happened following the first infusion, an uneventful treatment day now feels like real progress. Infusion #2 was much easier than the first, and Infusion #3 seemed easier still. The routine is beginning to feel more familiar: blood work, questions, doctor visit, infusion, home.
Not every treatment day needs a dramatic development. Sometimes a good cancer-treatment day is simply one in which nothing bad happens.
I’ll take that.
Then 3:30 a.m. arrived.
That is when the mind starts going back through the day and chooses the one unresolved thing to work on.
The left side of my neck.
At 3:30 in the morning, uncertainty has a way of becoming much larger than it is in daylight. These are the “night demons” — when the concerns of the day are magnified and the mind starts supplying frightening answers to questions that medicine hasn’t answered.
This morning I am trying to keep the facts separate from the fears.
The doctor felt something that she wants me to watch.
There is no confirmed new growth.
It may simply be a tight muscle.
I will monitor it exactly as she asked and let her know if I feel a lump developing.
And until there is evidence that tells me otherwise, I am going to try very hard not to let a possibility become a certainty just because it is 3:30 in the morning.
