We were supposed to be in Houston getting treatment right now. Ah, but we’re not. Here’s the true tale of helicopters, weather, purchased (and then refunded) airline tickets, and elevated liver enzymes.
As I mentioned in our last post, Angel Flights choked on some mistakes I made in attempting to schedule our trip today. To the rescue came a friend who, through another friend, had access to a helicopter that could chauffer us to Houston. Hurray! (And kind of exciting!) But similar small craft caveats applied: good weather, visibility, no clouds, etc.
This morning in Austin, Texas the weather was thick fog with heavy clouds and rain.
So, no helicopter ride to Houston. But this is why we have backup plans. At around 10:15AM when we realized that the weather wasn’t going to give us a break I began the purchase process for a Southwest flight that would drop Maggie off at about 1:30PM. Before I punched “Buy Now”, however, we paged Stephanie, the clinical trial coordinator, so we could tell her we were going to be late. Then we waited, and waited and waited. Finally, after about 20 or so impatient minutes of tapping my foot, I bought the ticket. And since it was Southwest, I went ahead and checked her in via the web site and printed her boarding pass. As I carried the freshly-printed boarding pass to Maggie the phone rang – Stephanie was calling. She told us that we should hold off on coming to Houston because “the chatter in the halls this weekend” suggested that Maggie wasn’t going to get treatment today anyway. We should, according to her, get blood work done in Austin and then send her the results.
Blood work done in Austin? This is what we suggested to them last week, the idea they pooped on because, well, who knows why. But now, after almost borrowing a helicopter and then after I bought an airplane ticket (of course) they came up with the brilliant idea of getting the simple blood tests done in Austin. Brilliant!
So, after we were done trying to be polite with Stephanie we immediately called Southwest to get a refund on that freshly printed ticket. Piece of cake and a full refund.
Fortunately, last week when we suggested to MD Anderson that we get blood tests done locally, I made us a Monday appointment at The Spa for just that. And because I’m crafty, I didn’t cancel the appointment when MD Anderson insisted that we come to Houston. Thus, when plans changed again we still had a standing appointment at The Spa just in time for us to head that way. Everything worked out perfectly.
The folks at The Spa were happy to see us. Everyone has been asking about Maggie, apparently, even the patients. Dr. Loukas, Nurse Mary, Nurse Sharon, the whole crew came by to check on how she’s doing. It was very touching.
Unfortunately, Maggie’s not feeling too well. She’s been running a temperature since late last night. This morning it was around 100.5. Before her nap started it was over 101. Same culprit as always, we guess. “Tumor fever,” what ever that is.
We haven’t heard yet if her liver enzyme GGT is still elevated. Dr. Loukas suspects it will be. He also is displeased at the idea that they are going to kick us out of the study because of the enzyme. We’ll keep waiting but I think in our hearts we already know the results. Maybe I read too much into Dr. Loukas’ furled brow but I suspect he’s none to happy with the elevated enzyme either.
The big “What Now?” question is again staring us in the face. Maggie’s pain is getting worse, little by little. Other than this trial, we aren’t on any treatment. And the tumors, even if they died down a little, now have a free run. Crap.
Dr. Loukas said we could try some radiation directed straight to the liver to melt it down a little. Maybe it would work. Maybe not. I’ve already contacted the Mary Crowley Institute in Dallas to begin the evaluation process there. I’m sure Dr. Kurzrock with her clipboard-touting entourage will want to see us again, no doubt in person, necessitating another trip to Houston. I don’t know what options she may have to offer.
Meanwhile, Maggie’s in bed sleeping with the puppies. Thick fog still blankets the hills outside my office window. And we don’t really have any answers. But at least we aren’t sitting in an airport waiting to come home.