Tuesday, October 27, 2009

DAY +145: a Bit of Chop in the Water

Top Line: Susan is likely experiencing some GVHD, and it's being treated

Dr. Soiffer was able to see Susan's results today and to confer back and forth with Nurse Amy, who did see Susan yesterday. Here is the summary:
  • The good news -- the flow cytometry test, performed because Susan's neutracils and lymphocytes are out of balance, revealed no, repeat NO, CLL cells; in other words, the transplant is working
  • The other news -- Susan's persisting body rashes and facial blotching, along with a white coating in the mouth, are indicative of GVHD (Graft vs. Host Disease); normally this would be treated systemically with steroids, but see below
  • Also, Susan's liver enzymes are elevated again, which at this stage is another indicator of GVHD. She will have to go back on her hated liver pill, the one she believes was most responsible for her nausea; we shall see
  • Another old nemesis has returned as well -- CMV (cytomegalovirus) -- necessitating the re-introduction of Valcyte to Susan's meds regimen
  • Steroids, which would be indicated for some of her GVHD symptoms, can increase a proneness to infection, and CMV is an infection, which is why Dr. Soiffer is holding off on the steroids for the time being
  • Susan will have blood work done in NYC next week, and on the basis of those results the Boston team will decide if and how to adjust treatments
  • I will report via this blog as soon as we have Dr. Soiffer's assessment and direction, based on the blood work to be done; the date is uncertain at this point (maybe next Tuesday?)
  • Susan is scheduled to return to Boston in 2 weeks, on November 9, and the results of that visit will be posted late that evening
No, this is not the kind of glowing report we've been accustomed to the past few visits, but remember that GVHD is a common occurence and Susan is being watched closely and treated carefully.

Otherwise, how does Susan feel about being back in NYC and what has she been doing? The answers are "good" and "not much." The sojourn in Spencertown served its purpose very well, but it was time for a change of scene. Bob is now available seven days a week and he doesn't have to do all that driving. People can stop by to help out or just say hello when Susan is up to it. The Siegels have been able to eat out cautiously and sparingly. And Susan got to see her first movie since May -- they went to a 2PM showing of The Invention of Lying. There were four other people in the theatre, which was the idea. Of course, with these new test results, it will be prudent for Susan to curtail her already limited activity somewhat more.

Again, expect updates in a week or so after the next bloodwork, and then on November 9th after Susan's next Dana Farber visit.

Monday, October 26, 2009

"No News is" . . . No News

Susan went up to Dana Farber today, Bob driving, to see Dr. Soiffer. Unfortunately, Dr. Soiffer was out with what may be the flu. Susan did submit to her usual tests, but we need to wait for Dr. Soiffer to interpret the results. I'll post again when we know more. It may be tomorrow, it may be a few days.

Monday, October 5, 2009

DAY +123: Good Blood, Bad Tooth

Top Line: On the oncological front, Susan is progressing well; on the dental front, she's hurting after a tooth extraction today

Dr. Soiffer was not available today, but who needs or wants a doctor when there's a good nurse available. Nurse Amy was pleased with Susan's progress. Here are some details:
  • All Susan's tests/blood work looked good, except for the liver function, which is slightly out of range and needs to be watched but is not a cause for undue concern at its current level
  • Everything looking good includes potassium levels. Yea! No more horse pills, although a continued focus on bananas would be prudent
  • Susan was taken off Valcyte (prescribed to treat/prevent cytomegalovirus) in favor of a milder medication, so she may start to feel a little better on that count alone
  • Susan's rash, face and body, persists but its intensity and the discomfort it has been producing seem to be somewhat reduced; it is what it is and will be what it will be; continue to treat it with lotions and cremes
  • Susan is indeed cleared to eat at restaurants, provided they are bad restaurants with few patrons, but she must exercise caution, e.g., no salads, fresh fruits/vegetables (unless peeled/cooked), etc.
  • The good news/bad news story is that Nurse Amy cleared Susan to start using a toothbrush (about time! you would say if you'd been anywheres near her these past months), but the tooth extraction she underwent following her DFCI visit means it will still be a while before she can exercise her new permission
  • The next Dana Farber visit (and next planned update of this blog) will be Monday, October 26th
From DFCI, Susan and Bob went to see Dr. Maniscalco in Arlington, MA, in order to have an infected tooth (#30, for the orally fixated) removed. The less said and the less time spent thinking about dentist visits the better (no offense intended to Dr. Maniscalco, who seems to be very good). We hope Susan's recovery from this procedure will be no worse than such things usually are. Time will tell. As of this evening, it hurts.

Yesterday (Sunday) we surprised and delighted Susan. Cousins Leslie and Rudy drove up from Granby, Connecticut to visit. Susan came out on the front porch to greet them upon arrival and noticed a figure in the back seat, whom she assumed to be Leslie's father, Uncle Joe. Imagine her surprise and delight when who emerges from the back seat but Uncle Sonny, just flown up from Florida expressly to see Susan.

With Uncle Sonny there (our mother's older brother, for those who don't know) I could not not be there too, so an hour or so later Maria and I showed up, which was also a complete surprise to Susan. Thank God Susan's heart is almost as strong as her sense of design. With Cici there as well ("babysitting" Susan in Bob's absence, he and Charley then being en route back from visiting his mother in North Carolina), we had a very companionable circle of seven to enjoy the afternoon together.

I mention this because I'm pleased to be able to report that Susan looked good to me, particularly compared to the last two times I had seen her. True, she's lost 40 pounds, but that looks good off her. 41 would be too much, but down 40, she's the svelte little number Bob married back in 1980. Her energy level was decent, her voice was strong, her demeanor was perky. If you assumed she was simply partial to headscarves (or do we have a closet Muslim in the family?) and perhaps had had a bit too much sun, compromising her complexion somewhat, you would not know if you did not know.

The others needed to leave earlier, but Maria and I hung around until Bob got back around 7 last evening, having driven up from the City after the flight up from Charlotte. The poor man's been pushing. And he needs to leave early tomorrow morning for several days of business in the City. Susan's babysitter (she chose that term, not me; in my day, we used to call it a "lady's companion") is going to be Maria, who decided to preempt me in the rotation. She'll drive up tomorrow morning and spend a few days with Susan, shopping, organizing, arranging, re-organizing, shopping some more, re-arranging and generally doing the things those two love to do together, within the limits of Susan's energy. Susan will also get much better cooking out of the deal than she would have with me there.

Finally, while no firm decision has been made yet, Susan will probably return to NYC not too long after next weekend. No subways. Mask and gloves when she ventures forth. But hey, it's Manhattan.

So, all in all, a good report. Look for the next one sometime in the evening of October 26th.