Monday it was time for the once-every-three months full battery of tests at the KU Cancer Center. First always comes blood work, and unfortunately, for the third time I got Marci, one of the world's least competent phlebotomists. As always, she first tried to put a port (because I would later need it for the CT scans) in my right arm; as always, after many attempts, she gave up on that arm as the three vials of blood were only half full. She had better luck with the left arm. She never gets it right the first time. She puts in the wrong sized ports so that they have to do it all over again when I go for scans. She often draws too little blood, so the CT people have to do that again. All the while, she mutters, "This just isn't my day." Marci is not a young woman. Has she been doing this for many years? Trying to be friendly, I asked her whether she ever got tired of drawing blood. "Oh, no," she said, "there are always challenges and things that go wrong." I doubt that was an overstatement.
The CT scans were scheduled for 11. It was after noon before they even began. Luckily, they went quickly and smoothly, though I had been shivering for an hour. Usually they give me a heated blanket, but there didn't seem to be anyone around. Finally, I got my expensive bone-strengthening shot, and this time I got my favorite nurse. The shots burn, and most of the nurses put it into my arm slowly, operating on the mistaken theory that it will hurt less if the medicine goes in slowly. This nurse just jams the needle in, plunges the medicine in in one fast injection, and it's over. Her method is much less painful.
Our friend Scott had been waiting patiently for over an hour (I had told him I'd be done at noon) at a nearby restaurant. We finally showed up, and since I hadn't eaten for 24 hours, I was ready for food. My appetite hasn't been good lately, and my turkey sandwich was delicious, but enough food for the rest of the day.
Our appointment with Dr. Van, the oncologist, was at 2:20. He's always late, but he set a new record by arriving at 4:10. In the meantime, we're in a small, windowless cubicle. One of the characteristics of a teaching hospital is that there is always an intern or a resident who comes in and asks questions that I've already answered dozens of times and that are clearly there on the computer monitor. I sometimes get impatient with this, but Monday's student was pleasant enough and provided a break in the monotony of waiting. All of the tests results, however, were very good. The hemoglobin count had actually risen, and most important there was no growth in the kidney tumor. So exhausted as I was, at least all the news was very good.
Still, the last few weeks haven't been very pleasant: I've felt the need for even more naps than usual, my appetite has been minimal, and what I do eat doesn't stick around very long. So we're going to make a couple of changes in the routine, including the amount of Votrient, the chemo, that I take. In the protocols, people start at 800 mg, but almost no one is able to support that (for one thing, the Votrient raises the blood pressure dramatically; I take three different anti-hypertensive medications). Most of the people in the tests had the dosage cut immediately to 400 mg. I've been on 600 mg for the last two years, but we're now going to lower the amount to 400. In the clinical trials, the average time that patients took Votrient was 7-8 months. Only one subject made it to 24 months. I don't know whether the trial ended then or whether s/he couldn't support it any longer. I've taken the chemo for slightly over 24 months now, so it's probably time to reduce the amount I take. We're also going to cut in half the dosage for one of the blood pressure medicines. The hope is that with less medication I'll have more energy.
As always, I slept the entire way back to Topeka and then crawled immediately into bed. I have spurts of energy--two or three hours at a time--when I feel almost normal. But they're interspersed with crashes when both my mind and body shut down completely.
On a different note, yesterday we gathered up my friend Virginia as the "disinterested party," went to the nearest bank where there was a notary, and the three of us signed the Iowa marriage license application, had our signatures notarized, and put the documents in the mail. I also mailed a check to the "officiant," so everything is proceeding apace with our marriage plans.
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