Executive summary: good scan results, lots of waiting.
Last year I spent a lot of time at SCCA. There were stretches where I went there every day, including weekends, for a few weeks at a time. “Home away from home” as a fellow patient said. When it came time to detach and go back to normal life it felt like there was something missing (I suppose there must be a medical equivalent of Stockholm Syndrome). I thought those kinds of days were over, but this past week (Dec 5-9) was almost a replay.
On Monday I had my Day 15 treatment of TRU-016. This meant having a blood draw in the lab in the morning to assess whether my various counts were within range to get treatment. Since I was getting infused later the lab went ahead and placed the IV. This was efficient, and avoided another stick, but it meant I had to go to work in the intervening 3 hours or so with an IV in the back of my hand. This is a little maudlin. By now I’m entirely used to being stuck but my co-workers were clearly taken aback. Fortunately the actual infusion was uneventful. In fact one of the main benefits of being in the clinical trial is getting infused in the special Clinical Trials Unit rather than the regular infusion area. I get in much quicker, it’s less crowded, less noisy, and by now they know me.
My blood results on Monday showed a hematocrit of 24, which is low enough to justify getting a couple of units of red cells. Nothing like fresh red blood to make everything better. The transfusion was scheduled for Tuesday at 5PM (it has to be done at night, you know). I got there on time, knowing that two units can take over 4 hours, and with the usual delays I could be bumping against closing time at 10PM. It seemed to be taking a while to get started. Then my nurse came in and said that although the appointment had been made, the blood hadn’t been ordered, so they were looking for one of my docs to order it. But even then getting it from the blood bank and getting it to my room could take … 3 hours. Big sigh. What could I do but wait? I already had the IV in. And I really wanted that blood. And when you really want blood nothing else will do.
I guess strings were pulled and favors cashed in, all for me, because the first unit showed up by 7PM and was pumping away by 7:15. Would we have time for both? Maybe, said the nurse, if we turn up the rate. Crank it up, I said, and up it went. I tried to be particularly still so as not to create any patient-side occlusion. In the end the second unit finished at 9:55 and I scampered out the door as they were turning out the lights.
On Wednesday all I had was a CT scan. This involves yet another IV so they can pump in the contrast dye that the CT detects. It also involves fasting for a few hours, and drinking some water-like stuff for an hour beforehand. This went smoothly, though it had to be rescheduled from Thursday so that the results could be ready for my meeting with my oncologist, who is only there on Thursdays. So this was a short day.
Thursday started with the usual blood draw so Dr Green could look at my numbers at our meeting. Of course the CT results were the main thing. And? The treatment does seem to be working: 60% reduction in volume of the tumors that caused the concern back in September. “In a word, terrific” said Dr Green. “So the treatment is at least doing you some good, that helps me sleep at night” he said. Also “that’s a joke.” We do have a good time at these visits, at least when the news is good. And this is good news. Still I have to carry on with the next 4 months of treatments to run the course of the trial.
Lastly on Thursday I had to get my next round of immunizations, replacing the immunities I lost last year with the transplant. Hep-A, Hep-B, Polio, something. I went back to infusion, things seemed to be taking a long time (this was regular infusion, not the CTU), and whaddaya know: “the drugs were never ordered, we have to find the doc, then it will be 45 minutes.” This had a familiar ring to it. I could come back Friday, but no. So I waited and eventually took my shots. Not as bad as an IV, but still unpleasant. (And the next day I really felt terrible from the after-effects.)
Altogether close to 20 hours at the clinic in 4 days, but with a solid dose of good news. And I don’t have to go back until my next 2-day, Dec 19 and 20. An early Christmas present.