Take Me To the Edge - January 13, 2011

Today was the final radiation session. Just before we arrived at the Cancer Center, Pete placed a call to Dr R's office and asked L if she could have a prescription ready for more rescue oxycontin. When he got off the phone, I asked him about his pain and he admitted that he was having increased discomfort in his back and the scapular area around to his chest. He asked if I would go up to the doctor's office to pick up the script while he was in radiation. Of course I would.

Right after I got my parking voucher validated at the radiation desk I headed up to the 11th floor. A was there when I went in and she asked how Pete was, since he had requested more pain medication. I told her that he had said the pain was increasing so she told me to bring him back up to see the doctor when the radiation was finished.

While I was waiting for the elevator to go back down to radiation, located in the basement, Dr R and A came out and joined me. Before they exited on the 6th floor they told me that they had not yet gotten any word about the PET/CT that was done on Monday. They would check with the imaging department and should have it when we came back up.

I was back to the radiation waiting room before they had even called Pete in for treatment. When he was finished we headed back up to the doctor's office. Dr R seemed a bit frustrated when we arrived and had us wait in the lobby area because he still had not gotten anything about the scans, apologized to us and got in the elevator to go down and get them himself. It was not very long before he was back, obviously agitated, waving pieces of paper in the air and muttering that "they didn't follow my orders." The papers that he had were apparently the report of the scan and it was only Pete's upper body. Pete told him that they had done the lower scan because they had to turn him around and do 2 separate scans because he's too tall to fit in the machine for a full-body scan.

Dr R went back down in the elevator, promising that he'd get it straightened out. When he returned the next time he told us he was very angry at the people in imaging because they should have had the CDs and reports to him right after the scan was completed. He left us in the lobby once more while he went into his office to check for the scans on the server one last time.

Several minutes later he called us in to discuss the report and again apologized that we had to wait so long and that he should have had the CDs and reports much sooner. He started discussing setting up the new chemo sessions for Tuesday and Wednesday. While doing that, someone brought the CDs and reports in to A and she delivered them to Dr R. He immediately put them into his MAC, uploaded them to his computer and started viewing them together with us.

The images did not provide any real information about the brain mets, but that was expected. The brain is too active to allow differentiation between tumor activity and the rest of the brain. As he scrolled down Pete's body that lesion in the lung that had caused Pete so much pain in the past still looked quite large, but the report seemed to indicate a downturn in its activity, from 22 to 17. There were several suspicious spots that seem to indicate there new lesions; one that appears to be a recurrence of the original tumor in his upper left arm, one in the upper right arm, one on the right side of his back near the ribs, another here, there, and another...

When he pulled up the images of Pete's lower body onto the screen he found a few more spots that were not evident in earlier scans, but there was no sign of the large one in his left leg, above the knee. The one that had shown up in his right calf seemed hardly visible.

He said that he would have to do a careful evaluation of the scans later on, but for the moment, it seemed that the chemo had been effective in removing or reducing some of the mets, but that new ones are continuing to crop up. Chemo will begin again, a double dose of Carboplatin, possibly in combination with Cisplatin and then follow up with a quadruple dose. Both of these have the potential to be effective against all the mets, including the cancer cells circulating in the meninges, which still appears to be inflamed, and those in the brain.

He talked about the possibility of doing some kind of treatment that included stem cells and of doing the spinal tap that they had considered before they did the vincristine and methotrexate combination. He warned Pete that the treatments were very aggressive, but that we are dealing with a very difficult and aggressive form of sarcoma, one in which some of the cells seem to respond to chemo, while other cells continue to increase and form new mets.

He asked Pete if he was ready to go on because these treatments could push him to the edge where his platelets would drop very low and have a difficult time coming back up. Pete made it very clear that he is eager to continue his battle against this disease when, without any hesitation, he responded, "Take me to the edge. I'm ready to do this. I want to do this."

Pete has a four day break before the next round of chemo begins.