Today has been another dip in the roller-coaster ride. (I guess we can be grateful that we aren’t doing loop-the-loops yet?) Brad is very fatigued and his gastrointestinal GVHD symptoms continue. I was also concerned to hear from the nurse that some of his liver function tests show elevated levels, but Dr R has assured me that the specific enzymes that are elevated are not the ones commonly implicated in GVHD of the liver. Rather, the uptick in levels is probably due to some of his medications, particularly the change from IV to oral medications, and the likely culprit is the antifungal medication he’s on. (He’s on both an antiviral and an antifungal prophylactically, and continues on vancomycin—a powerful antibiotic—to continue warding off the C. diff. There are several other meds mixed in there, so many it’s hard to keep track of them all, and the cocktail may well be accounting for Brad’s fatigue and a certain measure of confusion today.)
Meanwhile, his white blood cell counts have shot sky high, even above the normal range, as a function of the steroids he’s receiving to combat his GVHD. He’s also having some difficulty working up any appetite or eating, and his weight is dropping precipitously. Some of you might recall that Brad was pumped full of fluids in preparation for the transplant and gained close to 25 pounds of water weight his first week in here. There’s now been a full 40-pound drop since the high point he reached shortly after admission. For anyone who worries this blog is about to take a turn toward a supermarket-checkout magazine cover line (“Lose 40 pounds in 3 weeks!”), rest assured that we’re not exactly prepared to recommend the Stem Cell Transplant Diet as the next weight-loss fad to sweep the nation.
I confess I’m a bit worried about his difficulty with eating and his lack of nutrition. This morning I got here around 11am and encouraged him to have a go at his breakfast tray. It took about an hour for him to take in three bites of Raisin Bran and slightly less than a half cup of Ensure mixed with chocolate milk. As I write, it’s 3pm and the lunch tray stands untouched; in fairness, I don’t think hospital beef stroganoff looks all that appetizing either. He’s mainly interested in hot broth, which the nurse’s station stocks and can provide—but which is not terribly high in calories, protein, or anything except the power to be soothing. In short, he’s making valiant attempts to take in nutrition, but unless there’s a rapid and thorough turnaround in this trend he may be heading back toward IV nutrition (TPN).
With this down day and the difficult weekend, perhaps needless to say, all talk of and predictions regarding a discharge day have halted. Truth be told, I’ve been equal parts excited and scared to think of him coming home—and as sick as he is today, it’s certainly for the best that he’s in the hospital, as much as the girls want to see him and as much as I would love to quit shuttling back and forth to Davis 8. Still, caregiving at home will be no small feat.
I realize it’s also been a long time, on this blog, since I’ve said anything about what is going on on the home front. Joe and Susan, Brad’s parents, have been with us helping everything run smoothly, which has been invaluable. The girls have been doing well (a bout of stomach flu for Nora excepted), and carrying on with various activities. Nora is in a girls’ adventure club with her bestie and a few other girls aged 10-12, and has gone rock climbing twice this weekend (she was proud to conquer a route ranked 5.10). Lucy, who is currently at a birthday party (thanks to the parents of her bestie, who have been taking her for a much-appreciated every-Sunday play date) recently turned in a diorama on weather for her first-grade class; no surprise, our rather electrically charged girl chose lightning as her weather phenomenon and constructed quite a dramatic scene. I’ve been carrying on writing and so on, and tomorrow I’m planning to get out of town for a night or two to take a little break before Brad comes home (great gratitude to Joe and Susan for making this possible).
Today marks four weeks from Brad’s admission, as well as the end of January. I can’t say I’m sorry to see this month end. I know most places February is a cold, dreary month, but here in northern California, February usually brings a week or so of early false spring, when the almonds come into bloom. To me, February usually feels like it brings hope and a promise of better days ahead. Here’s hoping that’s the case.
5 thoughts on “Day +20”
I am sorry to hear it’s been a downer day. I am not sure you’re aware, but from the reader’s perspective — at least this reader’s — it still seems three steps forward and only one step back every now and then. I know it must be different for you.
Please extend our regards to Joe and Susan. My mother was just asking if they were there.
LikeLiked by 1 person
Hi Terrence. Susan here. So glad to read your comments. I know Brad really values your support and so do we. Please give our regards to Inera – we have such fond memories of both you and her!
I will let my mother know. I will also be sure to swing by on my motorcycle when Brad is better and ride him around.
Hope things will be on the upswing tomorrow.
Sent from my iPhone
Kate, You are an inspiration to all of us. Grounded, strong and such a beautiful soul not to mention loving wife. I hope you have a great break and that when Brad comes home it happens without any of the challenges he’s so valiantly battling. xo, Lori