Thursday, August 27, 2009

DAY +84: Moving in the Right Direction

More bananas, please. Otherwise everything's looking good.

Translation: Susan's potassium is still too low. Her other counts are all in the normal range. Dr. Soiffer does have to wait for some additional test results in order to determine which, if any, of Susan's medications can be reduced or discontinued. Potassium notwithstanding, he is satisfied with how Susan is progressing at this point.

You may remember from a post in the distant past that of all the pills Susan had to take, the one she most loathed and feared, the one that most appeared to have been designed for a horse, if not an even larger animal, was the potassium pill. It's a pill she had discontinued (I think; have to do a fact check) but may now have to resume. However, her plan as of this morning is to redouble her efforts to get her potassium the old fashioned way, but just how many bananas can one woman eat in a day? And will it be enough? We won't know until the bloodwork from her next visit to DFCI, scheduled for 9/14.

And the news from Spencertown? . . . Susan tells me she's feeling "pretty good" on some days, but not so good on others. Clearly, though, even the not so good days these days are much better than some of the days we remember from those days. It's progress. Cici had been up again for several days and she and Susan cut a wide swathe across the fun shops from Great Barrington in the East to Hudson in the West. I'm sure Cici also cooked her good dinners. By the way, Susan tells me she is eating and drinking pretty well at this point.

Barring the unexpected, expect the next post the evening of 9/14. And apologies that this post is the morning after -- wasn't able to connect with Susan until this morning.

Saturday, August 15, 2009

DAY +72: My Goodness . . . More Goodness

Top Line: Another good report at Dana Farber

The results of Susan's Dana Farber visit yesterday
  • most of her "numbers" are within normal range now
  • the few measures that are outside of range are expected to be so as a consequence of Susan's medication regimen and are no cause for concern
  • Nurse Amy has pronounced the VOD gone and the ascites that's been occasioned by it nearly so
  • her CMV test was negative which means that the team can consider taking her off the Valcyte (determination at next visit with Soiffer on 8/26); this will be good because the Valcyte is a significant contributor to her feelings of malaise
  • the fact that Susan continues to be fatigued (but she no longer needs to sleep an inordinate amount of the time) and continues to feel somewhat Y**** (but this is improving, too) is par for the course, says Nurse Amy, especially given the complications Susan had and the consequent additional medications, which she largely continues to take
  • NET: Susan's now where they'd like her to be (not Spencertown, per se, but in terms of medical condition) and is doing "very well"
As for the news around town, Cici was back up for a few days to resume her accustomed role, this time aided and abetted by a new partner, Susi Wunsch. Susan says they made good meals, which she ate reasonably well, and provided good company. They even went on outings to a housewares store in Hudson and a couple of shops in Sheffield, Mass (near Great Barrington). Just the cure for cabin fever. Cici and Susi returned to the City Thursday evening, passing the baton to Bob, who was the one to take Susan to Boston yesterday. Callie and Nate are up for the weekend, so there's company and diversion, and today looks to be a lovely day to sit poolside.

The next DFCI visit will be Wednesday, 8/26, when Dr. Soiffer will be available and, we're hoping, will determine that (a) Susan can reduce or eliminate some of her medications and (b) move to a bi-weekly schedule of checkups. That would not only represent progress on the road to recovery but also a lot less wear and tear on the Siegels.

So, unless something unforeseen happens in the interim, expect the next blog update on the evening of 8/26. Until then . . . .

Friday, August 7, 2009

DAY +65: a Good Report

Today it was Dana Farber for Susan and Bob (actually, just for Susan; Bob's only the driver). First, the vampires (a.k.a. phlebotomy unit), then Nurse Amy. Rather than list a lot of numbers with milligrams and decaliters and all that other foreign metric stuff that we Americans don't understand and shouldn't have to, suffice it to say that Susan's got great blood these days, and Nurse Amy says she's coming along nicely now. To be entirely honest, the potassium was a little bit low, but nothing that a banana or two a day can't handle.

She's lost another 6 pounds since her last visit (9 days ago) and 27 pounds overall, but I don't encourage you to try the Susan Kargman Siegel Bone Marrow Transplant Recovery Diet at home. Of course, much of that weight was retained fluid from the ascites, which is clearly much improved, but some has been lean body mass. She needs to build back up, so there'll be a focus on protein rich shakes to supplement her daily hard-boiled egg and mid-afternoon cheese hit.

By the way, the fact that she's had a good checkup doesn't mean that suddenly she feels fine. The lingering effects of her conditioning regimen and the transplant itself will continue to linger, though with diminishing intensity over time (we hope). She still has not so good days and somewhat better days, with some ability to nudge "lousy" (see, no more Y words) towards "so-so" or even better through the judicious use of drugs.

Her next scheduled checkup is in a week, and that will be my next scheduled blog post, unless something unusual happens in the interim.

Tuesday, August 4, 2009

DAY +62: Last Post until Friday, per Susan

First, how is she? "The same," to quote Susan directly. For those who may be dipping back into the blog after some time away, what does that mean? Feeling OK sometimes and kind of rotten at others ("rotten" being a synonym for the Y word in all its variants), mostly depending on where in their unpredictable courses her intermittent nausea and variable stomach pain (presumably still the ascites) happen to be. She takes medication for those conditions when she feels she needs to, and it helps.

More often than not she is eating more or less adequately and drinking enough. Her energy level is low, but she can muster enough on good days to get things done, e.g., paperwork, minor decorative and functional arranging of house and garden stuff (no heavy lifting obviously).

Second, I've provided the reminder summary above because Susan has suggested that we stop blogging every day unless there is some significant development. Her feeling is why subject us all to the daily rollercoaster of ups and downs when this variability is all within the bounds of her expected steady state, that is, it's "noise" rather than useful information. Really, how many more times do you want to have to read that Susan had a hard-boiled egg and toast for breakfast?

Accordingly, the next blog posting will be Friday evening after I learn the outcome of her Dana Farber visit, and updates thenceforth will be to report the results of her weekly DFCI visits unless something significant happens in between. You may want to check in between planned blog posts just in case something's come up, but no entry means no news which is good news.

Finally, since I won't be posting on Thursday, which happens to be Cici's birthday, please join me in wishing Cici a happy and healthy. Coincidentally, it's her 39th; that seems to be a popular age (at least for those of us old enough to remember Jack Benny, who invented the 39th birthday). Happy Birthday, Cici!!!!

Monday, August 3, 2009

DAY +61: Better Than Yesterday

Thankfully, I don't have to use the Y word tonight in any of its variants (see Tami's comment on last night's blog for Y variants), since today is a better day. Not great, but definitely better.

The big excitement was a trip to a plant store in Great Barrington. Glad she was up to that, although it did tucker her out. (Actually, I thought she wasn't allowed to do plants, but didn't think to ask Bob about it. Assume she wore a mask.)

Charley's come back up, and Bob leaves for the City tomorrow AM early. Otherwise, nothing of note. Don't you just love reports about life in Dullsville?

Sunday, August 2, 2009

DAY +60: Bob Siegel: "She's Not So Hot Today"

Today has not been a good day. No cause for alarm. Nothing is dramatically wrong or different. It's just one of those "yechy" days. She did eat some. She is drinking. She has just been feeling rotten today. It is what it is.

Otherwise, there's really no particular news or items of interest, except that S & B have begun watching the DVDs of the TV mini-series on the life of John Adams (based on the David McCullough biography). I'm pleased about this. McCullough is very good. Maybe she'll learn something and be entertained as well. After all, the purpose of literature (and by extension, TV mini-series based on literature (McCullough's biographies and histories rise to that level)) is to "delight and instruct," as both Aristotle and Horace observed. It's good to see Susan moving beyond entertainments that merely delight.

May tomorrow be a better day for her.

Saturday, August 1, 2009

DAY +59: Same-O, Same-O

The consensus amongst Susan's Recovery Blog followers seems to be: boring is good. I'm glad of that, because more boring is what we have.

On the downside we have (1) continuing intermittent stomach pain, presumably from the ascites, even though the retained fluid volume has diminished significantly, and (2) the persisting sinewave of nausea waxing and waning. Both these conditions are more or less amenable to medications, but she doesn't want to over medicate, so that's an ongoing, and delicate, balancing act.

On the upside, (1) we know that Susan's "numbers" from her tests are good (2) she's eating and drinking, not sumptuously, but enough (3) she's mostly staying awake during the usual waking hours.

If the foregoing sounds familiar, it's because we've heard this song before. We'll probably hear it again, and that probably beats the alternative. Listen in tomorrow to find out.