Well, first day back for my second booster/maintenance series. It's like old home week: the nurses are all familiar and smiley, the place looks and smells the same, but something seems a little off kilter. I can't put my finger on it. Then it occurs to me that I recognize no one from my prior experience. The patients are all new to me. As a group, they look mostly hopeful, though there are several in the room who are there because they have either just received bad news, or they have found out that the bad news has returned. But it is significant in an awful way that this is a different cohort.
ABJ reviews my case with me as he makes his rounds through the infusion room. I am sussing out what makes him so good. He has time in his rounds to repair to his office to bone up on the next several patients whom he will interview. He remembers that he saw me fronting the quartet at Le Nonne a few weeks back. It is another cue for his prodigious memory that takes me beyond the fisherman I was formerly. Of course, we also review fishing and I repeat the old joke that I no longer do "hard water", but only fish when it is nice and warm and I can be cozy in my boat, rather than listening to the ice crack under my boots and worrying about falling through.
I always ask him to review his other Mantle Cell patients as a touchstone for myself. In doing so, he shares with me his pleasure in the current outcomes of his two, both of whom have exceeded expectations. The expectations in his mind: 3-4 years. (I do recall this was an outcome of the Cornell protocol which he and I reviewed prior to my initial treatment.) It does make things finite. One guy (?) stayed on velcaid weekly for a number of years with no return of his MCL. They are now waiting with no further treatment in that case. A second appears to have undergone an autologous stem cell transplant after his MCL returned and is doing fine. I didn't get a timeline on that one.
The procedure today was delayed only fractionally in that the nurses couldn't get blood to flow back out of the port so I received an extra bag of saline to start. Eventually they prevailed and it was onto the Benadryl--which almost but not quite put me out, per usual. This was followed by the big bag of retuxin. Jan brought me a sandwich and the last bag tapped out at virtually the same time that we finished the sandwich. Total elapsed time: 4.5 hrs.
It has been one year since pictures so I am scheduled for a followup CT scan next Monday of chest, abdomen, etc. They were out of barium milkshakes so I need to go in tomorrow to pick up a couple bottles. A mid-morning scan time means that I prep upon getting up.
ABJ also reminded me that I am now 18 mos out from diagnosis, i.e., August 2011.
No comments:
Post a Comment