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.
