A surprise CT scan AND a surprise uterus

I went into our meeting with Dr. Hammers yesterday fully confident and prepared.  I had e-mailed him a series of questions prior to the appointment.  I had my fancy fountain pen that makes me feel more important and scholarly when I write with it. I had done my Google research. I even wore my extra smart bra (it lifts and separates).  But, once again, within minutes of walking into the office I found myself stuttering and stammering – woefully unprepared.

“You want to do what?  You want to do a pop CT scan? There was no talk of a CT scan. Talk is needed for this kind of thing. Advance talk. I’m a talker.  I’m not ready!”

One doesn’t just walk in and undergo a surprise CT scan. There’s a lot of Zen mental preparation required. And Ativan.

Hans seemed either mildly amused that he’d caught me off guard again, genuinely surprised that I hadn’t seen it coming, or afraid for his physical safety after my eyeballs rolled back in my head.  “Well, we don’t have to do a scan – I just thought that based on the e-mails we exchanged based on the previous progression on Sutent that you and Chris were ready to explore new options. A scan will confirm that there is more progression and whether we should change treatments.”

Chris asked Hans whether he thought we should do the CT scan and consider a new treatment regimen – as if my medical expertise weren’t enough – and Hans said, yes. Chris gave me a look that said, “stop whining,” so we – and by we I mean I – agreed to the CT scan.  I did, however, let Hans know that there is an element of emotional preparation that’s needed for a scan – and springing it on patients and their caregivers is frowned upon in the patient world and has, on occasion, resulted in violence.

After we decided on the scan, we began a lengthy discussion about what we might if the they once again showed progression.  I started throwing out drug names like a jeopardy contestant:  ”What is pazopanib for $500!” Chris just looked at me annoyed – asking if we could use the real names (meaning the brand names) rather than the actual drug names.  I condescendingly agreed.  (He also makes me call acetaminophen “Tylenol,” soda pop “Coke” and our biological offspring “daughters.”)

Truth be told, after all the discussions on various drug options, explorations of clinical trials, and, of course, witty repartee, we came to the following conclusion: Who the hell knows? There is no obvious next best step. That’s the problem with kidney cancer treatments – nobody knows why some work and others don’t. After a couple of options, it’s all really a roll of the dice.

That said, we do have other options – and we know how to pronounce them in fancy medical terms.  We’re considering a clinical trial at the National Cancer Institute in Bethesda, another clinical trial at Lombardi Comprehensive Cancer Center in Georgetown or sticking with Hopkins and trying another FDA-approved drug – which I call axitinib and Chris calls Inlyta. (Or Tylenol.)

But just when I felt like I was back on my game, fully recovered from the pop CT quiz, I was thrown for a new loop when we got the scan report.  The actual cancer results were exactly what we expected, considering we’d just done a scan a month ago: modest progression in the lungs again and stable disease in the lymph nodes.  The liver was normal, the spleen was normal, and the uterus was grossly normal.

Uh – what??  I’m sorry, what??  Chris has a uterus?  And it’s not just normal but grossly normal?

Hans took it in stride, even offering up a little irony, suggesting, “Let’s wait and see if they catch the mistake on the final report.” If not, he said, we can frame it next to the previous scan report falsely proclaiming Chris’s cirrhosis of the liver. Seems that while our oncologist is trying save Chris’s life, the radiologists are trying to kill him. Or grossly mutate him.

Chris is a little overwrought about his new-found uterus, noting that if he were to get pregnant he would be excluded from both of the clinical trials we’re considering. So he’s gone an abstinence kick.

In the meantime, we’re going to take a week or so to call around and investigate some of these trials and figure out next steps.  We’re seriously considering the NCI trial – which is a combination of a drug called Votrient and another one with a name even I can’t remember. It contains a lot of random letters and numbers. R2D2 or something like that. Another trial we like is called FANG. No idea what the acronym stands for, and it doesn’t really look right for us. But, seriously, who can pass up a trial called FANG? Are their venomous snakes involved? Vampires? Who knows, but it sounds exciting.

Thankfully, we’ve been doing research all along, knowing that we might need to make a change; so we’re prepared in terms of having looked at a number of options.  And we have a medical team that makes us feel a lot more confident with whatever comes next. So we’ll figure it out.

And with that, I need to run.  I’m off to the pharmacy to buy Chris some midol and cookie dough.

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