We interrupt this blog to bring you a just-breaking request from its subject, Susan.
In addition to friends and family with whom she is otherwise in touch, Susan has, with surprise and pleasure, gratefully received comments posted to the blog from people lost in her past and even a few total strangers. She would like to acknowledge this support but the blog does not require or capture your contact information. If and when you post comments, please feel free to include a contact email address or to reach out to Susan directly at SusanKargman@gmail.com. Thank you.
We now return to our irregularly scheduled blog posting.
Top Line: chronic GVHD persists (which is why they call it "chronic") as manifested in eyes, mouth, and skin, but it's not worsening.
While Monday offered Valentine's Day pleasures for most of us, for Susan and Bob it was another Boston grind: Dr. Soiffer, of course (preceded by the de rigeur pitstop at Phlebotomy so Soiffer would have numbers to cluck over). Also Dr. Triester for her mouth and Dr. Jacobs for her eyes. Lots of running around. At least the day was spiced up by the fact that the oncology people are now in their spanking new state-of-the-art digs, so there was the novelty of unfamiliar, and jazzy, surroundings. By the way, keep in mind that Boston's not all of it -- she regularly sees an internist and dermatologist in NYC whose observations and treatments need to be melded with those of the Boston docs.
Add it all up, and here's what's going on, in Susan's own words:
"Count: 22 pills (although one went down in dosage this visit) PLUS various drops, creams gels for mouth and eyes. Fun regimen."
But let's keep the long view in mind. Progress is being made, as a 9/11/10 photo of this glamorous woman suggests
Now, for the rundown of Monday's visit . . .
1. the SOIFFER segment: Susan's blood work was good, which is good, so they talked about the fact that chronic GVHD, even this far out, is not that unusual. It's impossible to predict how long it will last, but it could be many months, or it could be less (it's been, what?, three or four so far). It can't be "cured." It will run whatever its course turns out to be. However, it can be managed symptomatically (hence the doctors for eyes, mouth, and skin), with several of the indicated treatments being steroid based.
That introduces it's own set of problems, as steroids are not benign medications. It's a fine balancing act to provide enough steroid-based treatments, coordinated across several battlefronts (eyes, mouth, skin) to promote comfort and healing while limiting the complications which steroids entail. In fact, each specialist Susan is seeing would like to give her even more steroids but they can't, because in the aggregate she's at the fine edge between more harm than good. One of the side effects of these steroids is difficulty sleeping. File that thought.
The new news is that (1) Susan has an upper respiratory infection, which her internist is treating with antibiotics, but she feels kind of rotten as a result. And (2) Susan has not been sleeping. She either can't sleep so she stays up until 3, 4, or 5 in the morning, or she does manage to fall asleep earlier, say 11 PM or midnight, but then wakes up at 2 and can't get back to sleep. That makes her feel kind of rotten, too. Add in the GVHD, and you get the picture. Of course, adequate sleep is important to her recovery from GVHD. Dr. Soiffer prescribed a new sleep medication. We'll see how effective it is.
2. the TRIESTER segment: The condition of Susan's mouth is about the same to slightly improved, but Dr. Triester observed what might be a yeast infection so he has added an anti-fungal medication to the rinses and creams she is already using for her mouth and lips.
3. the JACOBS segment: there appears to be some modest improvement in Susan's eyes.
On the dermatological front, while she is still rashy, she is not itching as much as she once was. So, she may be a little less uncomfortable with respect to GVHD symptoms, but we don't know, because the upper respiratory infection and sleep deprivation are masking how she would otherwise feel. As the antibiotics and the new sleeping pills do their job, We think and hope that, with respect to GVHD, she'll feel somewhat better.
Dr. Soiffer's scheduled her next visit for April 11th, almost two months out. I take that as a good sign. Tune in then for the next update,