Wednesday, June 2, 2010

DAY +365: Happy Anniversary!

Top Line: a good report at the 1 year mark

Hard to believe, but it was a year ago today that Susan received her transplant. For those fond of strolling down Memory Lane, I have dug into the archives to append the blog from that day (see below). As for today, here's how things stand:

Susan was to have gone to Boston yesterday for a liver biopsy, among other things, but she "called in sick" with a sore throat, so those procedures were postponed. By last night she was feeling better and today Susan and Bob drove up for her scheduled appointment with Dr. Soiffer. Her consultation came after the usual round of vital-signs-taking and blood tests, all the results of which are not yet available, but based upon what Soiffer did see, he pronounced her "doing very well at this point," especially given her rocky history over the past year.

To be more specific: those test results that were available by this afternoon were all good, including those that indicate how the liver is doing (e.g., bilirubin). The liver, as a potential locus for GVHD, has been, you'll remember, an ongoing concern, with a secondary manifestation of severe ascites. One of the rationales for the liver biopsy scheduled for yesterday was continuing ascites. I'm delighted to report that the ascites is now so diminished that Soiffer doesn't see a need for the liver biopsy.

The most interesting aspect of the day was the spate of re-vaccinations which Susan needed to have administered. A year ago, when she lost her marrow, she lost her vaccine-provided immunities. Today, like an infant, she was at the point where she was ready for her standard set of childhood vaccinations. Happy Anniversary and Happy Birthday, Susan!

As those of you who have had recent contact with Susan outside of this blog will know, after what seemed an interminable period of halting and uncertain progress, with two fair-to-good days followed by a really Y**** day, Susan has strung together an impressive number of good days. While she appears painfully thin, or fashionably slender, she has actually gained back 4 pounds recently and is now eating with a pretty good appetite. Woohoo! It's a far cry from cheering when she managed to down half of a grilled cheese sandwich.

The one year mark is often thought of as a watershed (informally, of course, as there's no clinical, or magical, boundary that separates day 364 from 366). But transplant patients who make it this far are seen as moving into clearer, less dangerous waters. No guarantees (when ever are there) but the progress is indisputable.

We'll wait, of course, for the remaining test results, but absent surprises, Susan's free to cruise along unmonitored until her next DFCI visit on July 9th. Until then . . .

Tuesday, June 2, 2009

DAY ZERO: Out with the Bad Cells, In with the Good

The donor stem cell's, now Susan's (top)
Susan and Nurse Karen doing nothing (left)

The deed is done. The infusion began at approximately 10:15 today and was finished about an hour and a half later - turned out to be briefer than expected. And yes, for the major inflection point in Susan's disease, it was an underwhelming event. Nurse Karen simply hooked up the bag with the stem cells (the red bag in the picture above) and that was it. No drumrolls, no fireworks display, just a steady drip like any other coming from a bag through an IV line. If Susan did not know it was happening, she wouldn't have been able to tell.

Susan's team of 5 doctors came in at one point during the procedure, nodded sagely, clucked a bit, squabbled mildly and made up (just to show they were on the job), and then left without doing anything or offering any useful information or advice. Dr. Soifer (Susan's lead transplant specialist) stopped in a bit later to say hello and said everything was looking good.

Susan has no appetite but Nurse Karen says that's par for the course. I'll continue to nag her about her applesauce and fluids. Otherwise, she definitely looks better than she did yesterday and feels somewhat better - if she were eating and drinking, she'd feel better still, but that's a fine balancing act between nutrition and nausea.

Susan's room is a little like Grand Central - people are constantly popping in and out. In just the past hour we've had Nurse Karen bearing ice chips, Carol the Patient Care Coordinator with documents to sign, and Tammy the Social Worker for no discernible reason, but she was very sweet and she did leave her card.

And finally, Susan says "Hi. I'm glad it's over, but the real part is just starting." Couldn't coax more of a statement from her for the record at this point, but she says she may have more to say later, so stay tuned.

1 comment:

  1. Yay! Happy Anniversary, Susan! I'm so happy to hear that things are going so well, and especially that you don't have to have the liver biopsy. I hope to speak to you soon, lots of love,
    Harriet B.