Debbie and I made a trip to Houston on Sunday. I had an appointment at BATCC for my two month checkup for the Ruxolitinib clinical trial I am on. For a while we were making the trip every two weeks, but now, we have settled into two month, which is a lot better. Over the six months I have been on the trial, I have had my dosage increased twice, starting at 10mg twice a day, now up to 20mg twice a day. I have also gained 17 pounds, which they say is not untypical. I have had some side effects, some not so pleasant, but overall, after having adjusted to the medication, the new dosage is having a remarkable effect. There is life before Ruxolitinib and life with Ruxolitinib. With it, I’d say there is a 75% improvement in the manifestation of CLL symptoms.
While the focus of the trial is to treat the symptoms of CLL by targeting an enzyme that exists on the surface of the malignant cells called JAK7, which is an inflammation producing agent of the first order, I think the drug is having some effect on the root of the disease.
“It very well could be,” said Dr. Gooday. He was very encouraging.
My White Blood Cell count is still inching upwards. I am a little anemic and have a low hemoglobin count,m but those are all by products of the medication. I am able to manage, p[particularly since my energy levels are pretty good. I have as much energy as any 59-year-old man, and more than most. There is a lot to be thankful for.
The decadence part of this blog didn’t occur at BATCC. It occurred on the trip over when my perfectly executed plan was to stop at Don’s Seafood in Hammond, Louisiana, and eat everything I wanted to. I loosened my belt as I went through the door. When we were seated and presented with a menu, I started ordering like Diamond Jim Brady presiding at the Captain’s table on a luxury cruise liner. steaming across the North Atlantic for a visit as the guest of European royalty. I told the waitress to bring the food one course at a time and to check back frequently. I was going to be there for a while.
I started with Don’s famous Jacked-Up Oysters, grilled on the half-shell and stuffed with crab meat and pepper jack cheese. She then delivered a cup of crawfish bisque, though I had considered ordering a full bowl. I made the decision at the last second to go for the cup, instead. The cup was fine; the bowl would have been too much. The moment I ordered the bisque, Debbie started fumbling through her purse. Before I had finished ordering, she had produced a Prilosec, holding it up with a knowing look.
“I thought you might be needing that,” she said, placing my hand.
I then ordered two pounds of boiled crawfish. It is a bit early yet for crawfish, but they are just starting to come around, clamoring to get into the traps just so people like me can eat them. These were young, small, and clean…not a hint of mud on them. There were every bit as good as they were clean.
I then ordered the fried soft-shell crabs, which, as you regular readers know by now, is my favorite thing in the whole world.
The waitress and the kitchen timed everything perfectly. Each course and accoutrements was delivered just as I needed it, including extra napkins required by the boiled fish/full beard combination, as a couple of times I was wearing as much crawfish fat in my bear as I had beard.
Wipe your beard,” Debbie said. As I searched the table over for a clean napkin, the waitress rushed over and placed one in my hand. I think she and Debbie had decided simultaneously that my beard needed attention.
I admit that though I ate too much, it was not TOO much. I could have eaten more, but as it was I enjoyed every bite, including half of the hot fudge brownie/vanilla ice cream dessert Debbie had ordered. It was a stunning meal served by professionals who were proud of their work. Sometimes, a restaurant realizes that their patrons are there to enjoy the food, not just eat. If I had just wanted to eat, I could have eaten anywhere. I wanted to savor, and they furnished me with everything necessary. I enjoyed it so much on Sunday that I simply waved at Don’s on the way back, Monday. I was satisfied with the wave.
On top of that, a friend in New Jersey sent me a nice gift of a country ham from the Loveless Cafe. My, oh my, it is good…perfectly cured and smoked, perfectly aged, with just enough of a whang about to grab your attention, an effect we lovers of country ham admire so much.
I laughed to myself as I pondered the thought that I’m glad I don’t keep Kosher. Not a single thing I ate would have passed muster. You can look vainly for the rest of your life and never find the Hebrew Union seal on shellfish or ham.
All of this went down well with the Ruxolitinib. I’m sure it enhanced the effectiveness of the medication. I’ll have to pass this important research information on to Gooday and his other researcher colleagues at BATCC.
I’m sure they can’t wait.
©2017 Mississippi Chris Sharp