Top Line: Chronic GVHD persists, but MAC is vanquished, meds are beginning their downward adjustment, and Susan feels mostly decent most of the time.
It was two weeks ago (10/22) that Susan made her most recent Boston pilgrimage. Life (no excuse) and Hurricane Sandy (subject and blogger both without power) conspired to delay this posting, but now, here it is. Had there been truly urgent news, I would have found a way. Fortunately, the ship of recovery continues to sail on an even keel.
Susan and Bob actually stayed over in Boston that Sunday night, given a 10:30 start of appointments and a very packed day. The rounds began for her at MEEI (Mass Eye & Ear Infirmary, but she only needed the “eye” part), where she had blood drawn to centrifuge into the serum base for her designer eye drops. These are the ones that have to be kept refrigerated, so some attention to logistics is required, but they really do provide relief. One of the minor impacts among so many horrendous ones attributable to Sandy, is that the drops, although ready, are being held frozen up in Boston until the Siegels are confident that UPS is again delivering normally without risk of delay (and spoiling of the frozen drops).
Then it was over to Dana Farber and phlebotomy for more blood. She wasn’t able to make it there in time for her 11:30 slot, so she lost her place in the queue, had to wait some, and the domino effect scrunched her subsequent appointments. She was late for her 12:30 with Dr. Soiffer, bumping up against his 1PM commitment, with blood work results just beginning to trickle in (wordplay – blood/trickle – intended, as always).
Soiffer was pleased with how Susan looked upon examination, but their meeting was abbreviated and the information available to Soiffer was incomplete. From what he could see, the numbers were decent except for some anomaly on kidney function, which will have to be monitored. Susan’s to check it again in NYC in a month (now, two weeks).
The good news outcome here was a net reduction in medications: based on good liver function levels, one liver med was eliminated altogether (although another was increased some), and her prednisone dosage was reduced from 10 to 7.5 mg. And in the good news vein, note, it had been 4 months since her last DFCI visit, and her next visit will be scheduled for about 3 months out. Remember when she was going up every week, and then every 2 weeks, and so on. This is goodness.
Next, it was over to Brigham & Women’s Hospital to see Dr. Triester, the oral oncologist. If you remember, in the previous blog posting, we mentioned that Susan was afflicted with a verruciform xanthoma, an uncommon, but not unheard of, fellow traveler with GVHD. This visit Dr. Triester removed it. The biopsy results have come back negative. Good. Susan is now decidedly more comfortable in the oral region, tolerating a wider variety of foods, and eating with a better appetitie. Also good.
By the way, and to round out the day, she also received her flu shot while she was in Boston. Remember George Burns, who famously said (to paraphrase): At my age, when I bend down to tie my shoes, I look around to see if there’s anything else I can do while I’m down there.
Finally, and unrelated to Boston or Susan’s recovery, she has developed a squamous cell carcinoma on her face. Unlike a melanoma, a squamous cell carcinoma is usually not a cause for concern if it’s caught and attended to early. She’s been planning to have it removed and biopsied here in NYC. However, in yet another instance of Sandy’s reach, the NYU Medical Center Hospital, out of which her dermatologist works, has been shut down temporarily, postponing Susan’s attention to this matter. Of course, she’ll reschedule for the earliest possible opportunity.
Check back in about 3 months, folks for the next status update.