Thursday, September 17, 2009

DAY +105: A Good Report: the inside scoop

Top Line: Susan gets A+ for "most improved award" but don't break out the bubbly just yet

So, the short version is: Susan's lab results and physical exam indicate she is coming along nicely. The reason not to get too excited yet is this: Susan has now moved beyond the high danger period for infections and pre/post-procedure reactions (of which, you'll remember, she had more than her share), but she is now entering the highest risk period for chronic GVHD. Mild cases are not uncommon and not serious, but GVHD has the potential to become nasty and dangerous. So we must watch and wait.

For those who want the long version, read on.

Yesterday Susan saw a dentist in Arlington (Mass.) and an oncologist in Boston. You know about Boston, but why the dentist, you might wonder? And why Arlington? Here's why . . .

Last week Susan had a terrible toothache and very pronounced swelling, as if she had an oversized wad of chewing tobacco in her cheek, which, of course, she didn't. The pain was accompanied by a number of other of the usual old complaints, in particular, nausea. Bob established and maintained contact with Dr. Soiffer, so she was being monitored. I was able to stop by Saturday for a bit and she did not look or feel good. Fortunately, time and antibiotics brought down the swelling and reduced the pain to the point where, by Monday, Susan was up to a galavanting-around-the-area-shops-and-museums run with her faithful companion Cici.

I relieved Cici Tuesday evening, pleased to discover that Susan looked and felt much better. At that point the plan was to see Soiffer Wednesday PM and then probably stay over in order to see an oncologically oriented dentist that Soiffer had lined up for Thursday. Turns out, though, that Susan's (and coincidentally, Cici's) former dentist in the City had bought a practice in Arlington (just outside of Boston) and was able to see her on short notice early Wednesday afternoon.

The problem turned out to be with tooth #30 (you all know which one that is, right?), site of a failed root canal which is non-restorable and in need of extraction. The good news is that Dr. Maniscalco felt the now contained state of the infection indicated that Susan's immune system, aided by the penicillin, was functioning at some non-negligible level -- Hooray! -- and that the extraction could wait for a couple of weeks until her next trip to Boston.

Next stop, Dana Farber Cancer Institute in Boston. Based on the blood work and X-ray Susan had upon arriving, here's what Dr. Soiffer had to say:
  • The X-ray was negative, indicating that the fluid in the base of the lungs was gone
  • the lab results were all in acceptable range, except for
  • you guessed it -- low potassium. Soiffer is not particularly concerned, but Susan needs to continue taking the horse pill-sized supplements (which she cuts in half for manageability) and it won't hurt to beef up her banana consumption
  • since her liver function is now OK - the days of VOD and ascites are gone - she can discontinue the Actigal and also the water pill; that's two pills down and 27 or so to go
  • Soiffer is also considering tapering off her immune suppression medication and may do so if the next visit's results continue to be encouraging
  • Susan does now have pretty much a full body rash, which is quite uncomfortable and for which she's been prescribed a steroid creme; the rash probably indicates a mild case of GVHD (graft vs. host disease), but that's not unusual and not a cause for concern at this point; of course, it must be watched
  • Soiffer explicitly rated Susan's progress as "A+" (of course, the grade inflation practiced by Harvard Medical School professors is notorious). When pressed, he said that it was actually a measure of improvement rather than an assessment of current condition against some absolute standard. In fact, he feels she's now at a level of progress he would expect to see in a "normal" patient (i.e., one who never experienced the complications Susan had) who was doing well. So let's make it a "B+/A-".
  • Dr. Soiffer went so far as to say that Susan could now relax the dietary restrictions, though still exercising caution. She has even been cleared to eat in restaurants, although he recommended poor restaurants with very few patrons. She still needs to avoid crowds and wear a mask when around people and it's difficult to eat with a mask on. We celebrated after the appointment by following Soiffer's recommendation -- the food court adjacent to DFCI qualifies as poor in most anybody's book and it was easy to find a back table with no people around. Susan ate a bit of less than mediocre spaghetti and meatballs for her first "restaurant" meal since May. She was underwhelmed by the experience.
Just so's you know, despite a good checkup and a satisfied doctor, and discounting a troublesome and most itchy rash and the continuing, though intermittent, nausea and the lingering fatigue, Susan isn't feeling what one might call "good." But with all the medications in her system, that's not surprising. As she is weaned off of them, a process which has now begun, we hope she will begin to feel as good as the numbers say she is.

The next DFCI visit is scheduled for Monday, October 5th. Until then . . . .


  1. I'm glad to hear that so many things are going well and sad to hear that you're not feeling well! Keep up the good work - it seems you're headed in the right direction!

  2. On this eve of Rosh Hashanah,the new year will bring better and better feelings days ahead. Also glad to see that you are starting to reduce the number of meds. That is so encouraging. Just know that we are all thinking and loving you,

    rick and gig

  3. Dearest Susan,
    Everyone here at LLS is continuing to send buckets of well-wishes your way. I was delighted to hear that you are doing so well - A+, nice! I always know you were a wonderful student : ) Please let us know if there is anything we can do. Until we see your gorgeous mug back in the Big Apple, we will keep you in our thoughts and our hearts.
    Warmest wishes,

  4. Hi Susan,
    I got the Mountain Day notice from MHC and immediately started thinking about you and your journey up this recovery mountain. I love the A+ grade you've gotten. I can read how much effort this is requiring on your part. Sending you love and healing, anti-nausea energy and thoughts--

  5. Susan: Am reading this way late, given I saw you immediately after the last visit and now realize that it is today you go back. Hoping for good grades this time too.

    Ever in admiration of your strength and patience in this long and really hard process, Bob's, Callie's and Charlie's too. Sending you love and good vibes. Diana