Top Line: Eyes improved, mouth improved (but there’s a but), skin no worse, MAC in check -- maybe GVHD is loosening its hold?
Susan and Bob made yet another pilgrimage last Wednesday to DFCI, the mecca of cancer cure, control, and care. First up (after the obligatory visit to Phlebotomy) was Dr. Villa, to address all things mouth. The good news here is that, based on comparative pictures, Susan’s mouth region looks better overall. This is important because it has been pain in this region that has made it very difficult for Susan to eat, and hence, to get adequate nutrition to promote recovery. The bad news is that there was one problem area – lesions on the gum – that needed exploring, via biopsy and stitches (big and continuing OUCH), to determine whether it is GVHD or something else. Results pending.
Next up was Dr. Soiffer, who pronounced himself satisfied with Susan’s overall condition. Her blood work results came back pretty much in acceptable range for all factors except bilirubin, which was somewhat elevated. Susan has had some swelling in the ankles, and Soiffer has put her on a water pill for this. He wants to see her again in 3 weeks.
Her final visit was with Dr. Dana at the Massachusetts Eye and Ear Infirmary for the usual battery of eye tests and an examination. Dr. Dana noticed, and Susan feels, improvement, such that he doesn’t need to see her again for 2 months, barring any unexpected developments. It seems that the tailored serum (ref. 8/15/11 post) is working – that, or her GVHD is improving, or both. You’ll know that her eyes are working because she actually drove to Hudson last week. Couldn’t have done that (at least not comfortably or safely) back when she couldn’t open her eyes.
She was not able to see Dr. Marty about her MAC condition, but here, she certainly continues to feel relief from the symptoms that led to her diagnosis. Some factors of the blood work done on Wednesday will enable Dr. Marty to determine whether the drug protocol he put her on needs any adjusting. Results there also still pending.
All in all, the improvements noted could mean that her GVHD is subsiding, but before proclaiming that a corner has been turned, let’s see what the story is after her next visit. Now, for a bit of trivia, to suggest how things might have improved: on the way back from Boston, Susan asked Bob to stop in Natick so she could check out a Container Store there – sounds like Susan of old. While in Natick, they happened upon a Jewish deli, where Susan ordered and consumed some kugel and soup (chicken, I presume), in spite of the sutures she’d received earlier in the day. That’s encouraging.