A big man with a lead pipe, a bone scan and a drug called Cabo

He was a large man, overflowing his chair. He looked a bit like a bean bag that had been tossed into a child’s rocking chair. And he was carrying a heavy leaden pipe. These are not things that normally put me at ease, and I was not comforted when he pulled a needle out of the pipe. It was a scene out of Clockwork Orange, a demented sadist with creative weapons.

Except that he was hilarious and used jokes to calm me down. He could tell I was nervous about the needle — after all, it did have a nuclear warning sign plastered to the side, one of those yellow triangles with three black geometrical shapes framing a black circle. If you look at the warning label for a few moments, it starts to look like a happy headless clown. This can be a good or a bad thing.

“Want to feel it,” he asked.

“Er, feel what exactly?”

“The pipe.”

The pipe was blue and about 10 inches long. It appeared to be constructed of aluminum, solid but lightweight, like a baton used for track relays. When he handed it to me, my arm dropped. I felt like Wile E. Coyote when somebody hands him an anvil and drops off a cliff, his arms stretched three times their length.

“Wow, that’s got some serious heft to it.”

“Yeah,” he said. “I keep one in my truck for protection.”

“Why so heavy?”

He gestured at the needle, the one he was getting ready to slide into my veins. “There’s some serious shit in there, man. The lead protects anybody who needs to handle it.”

The needle was small in his big hands. Aside from my go-to phlebotomist, Robert, I’ve traditionally had better luck with dainty-handed techs. But he slapped the crook of my elbow a few times to raise the veins and was in and out in seconds. I think I love him.

All of this was preparation for a bone scan, which I haven’t had since my initial diagnosis back in 2009. We walked down the hall, where my pipe-wielding friend handed me off to a young woman who helped me onto the table, set a cushion under my knees, a pillow under my head and a warm blanket under my chin. I felt like a massage should come next.

A question: Is it rude to sleep during a bone scan? I can’t find an etiquette book describing the proper behavior of a gentleman undergoing nuclear imaging. I think I may have snored.

It’s not really my fault. Bone scans take a lot longer than CT scans, with which I have far more experience. (I’ve got more radiation in my body than one of those sinister cement volcanoes at Three Mile Island.) With the CT, I’d become accustomed hoisting my arms over my head and being slid, on an elongated bench, in and out of the giant metallic donut hole – an unavoidably bizarre sexual metaphor. I think the good people of GE must have conspired with Alfred Kinsey in the design and engineering of their radiology equipment. And, to keep the metaphor alive, I was always done quickly. Wham-bam. The bone scan, however, is a slower process. The sliding in and out is less rushed. You take your time. It’s the Barry White of the nuclear medicine realm.

First, they slide in your ankles and photograph your feet for a good five minutes. (I know, it just keeps going.) Then they do your head for another five. (No comment whatsoever.) Then they do your pelvic, abdominal and thoracic area for another twenty-five minutes.

Twenty-five. Thirty. Thirty-five. All in a nice quiet room with the lights dimmed. Who wouldn’t take a nap? Dena falls asleep during the opening credits of any show we try to watch together. She wouldn’t even make it past greeting the technician before she would wind up in a snuggly fetal position on the bench asking for her blanket. After the initial scanning is complete, the tech calls down to oncology with the results and waits to see if Dr. Hammers wants any additional images.

The good news is that I had no bone mets. The bad news is that I had no bone mets.

A side benefit of getting the bone scan was that if we did get news of a bone metastasis, I would have been eligible for a clinical trial with one of the hottest, most promising drugs in the cancer community. The drug is called Cabozantinib — or Cabo to its friends.  There is only one kidney cancer trial being offered for the drug – it’s in Boston – and you have to have bone mets to qualify. So, in a weird kind of way, we were almost hoping that I did have a bone met in order to get to this drug, which has produced outstanding results on both bone and soft-tissue metastasis. When we were told we had no bone mets, we found ourselves in the awkward position of being both relieved and vaguely disappointed. We are down to few drug treatment options now, and Cabo — which attacks the cancer in a way the other drugs we’ve tried do not — could be our answer.

As it stands, we have recently started on Votrient and we are hopeful it will be our drug and that we won’t need Cabo.

The other thing we learned from Dr. Hammers was that my pneumonia has not gone away. It actually got better in some areas of my lung but got worse in others. So after a month and a half of battling, first, pneumonitis and, then, pneumonia we have begun a third antibiotic in the hopes we can finally vanquish this lung infection.

So the drive home from Baltimore was a little quiet. We’d been undergoing another CT scan and the bone scan in addition and had mixed feelings about the day. That evening, as Dena was checking her mail and settling her affairs for the day, she came across some startling news: That very morning, while I was undergoing bone and CT scans at Johns Hopkins, the FDA announced that it had approved Cabo! It was very exciting news.

Kind of.

The FDA approved Cabo for medullary thyroid cancer. Not kidney cancer. Which means I still can’t get it. Or, more specifically, I can’t likely get our insurance company to pay for it.

There is an option, which is a very difficult one. We could pay for the drug out of our pockets. Considering the success rate of Cabo, it’s not an option to dismiss lightly. On the other hand, it is a remarkably expensive drug. We would likely face throwing everything we’ve got into this drug, hoping it works. The very thought of it leaves me queasy.  But, then, so does the thought of dying.

For now, it’s not a question I have to answer immediately. We’re praying that the Votrient works and saves us from such a decision. In the meantime, I’m going to spend some of that Cabo money on the latest X-Box Call of Duty as a Christmas present for … um, my little Josie. (What four-year-old wouldn’t love a chance to fire rocket grenades into enemy villages?)

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