Thursday, August 29, 2019

The Case of the Disappearing Spots*

When I went to the clinic yesterday for what I thought was going to be the first of four CyberKnife procedures, it turned out they had me scheduled for only one procedure. What? But when I'd gone for the consult a few weeks ago, the rad onc told me it looked like I had four cancer spots on my brain and that I'd probably need four sessions, one to treat each spot. Nope! Much better news! It turns out that on closer inspection with the super-duper stereotactic brain radiation planning MRI in August, my lovely rad onc was able to see only two li'l spots in my noggin instead of the original four we thought were there back in July, so she was able to zap both li'l spots (which, she is certain, were indeed cancerous lesions) in the same session. But what happened to the other two spots? The good doc suspected that they had perhaps resolved on their own and might just have been enlarged blood vessels. Whatever the reason, I'm glad and deeply grateful they are both gone, and I'm glad the two remaining spots got zapped and are curling up to die as I write. 

Today I am tired and dizzy, and my face is a big fat full moon from the steroids I have to take to keep my hot mess of a brain from swelling, but I am finished, after one treatment, with brain radiation. Now for some rest.

Here's the upshot regarding prognosis -- I am likely never going to be "cancer-free" unless research really speeds up a lot and the brilliant minds find the miracle cure. I've known that since the beginning. I had been very hopeful that I would get more time on the two inhibitors we've tried, as other patients have gotten years on both crizotinib and lorlatinib. That still could happen with lorlatinib with help from radiation and chemo, but my cancer sure does like to mutate quickly, so we'll see.


I really do hold stock in what my first onc, Dr. Peacock, had to say when I was first diagnosed: "We're hoping to treat metastatic cancer as a chronic condition, and we're hoping the research outpaces the disease." Where the research is leading now is in the direction of personalized, genetically tailored treatments (vaccines), immunotherapies, targeted therapies, and combination treatments like the one I am trying (targeted therapy (loraltinib) + radiation + chemo). My new onc, Dr. Johnson, works on the cutting edge, right where I am disease-wise. So I remain hopeful that if we nip and tuck these pesky pop-ups, and I maintain a healthy lifestyle, I'll be able to live a long time with this rude little cancer gangster doing life in inhibitor prison. Maybe one day it will disappear like those two spots.

*This content is adapted from a CaringBridge post which goes into more detail about upcoming treatment, so if you want to see that you can visit Leslie's CaringBridge journal.

Saturday, August 24, 2019

Marie and Maeve: The Further Adventures of Gamma Girl

In our last episode of Sojourn & Stardust, Gamma Girl (of the ROS1der franchise) was happily recovering from a series of radiation treatments aimed at stopping the growth of one Li'l Lung Cancer Spot in a retroperitoneal lymph node. And indeed, a subsequent CT scan of that area at the end of July revealed that the treatment seems to have been successful; Li'l Spot is shrinking. So hurrah for modern science, hurrah for a fabulous radiation oncologist, and thank heavens for more grace.

But, just to be on the safe side, doctors also had the MRI machine look inside Gamma Girl's glistening brain on the off chance...well...yup, there they were, four more li'l spots, measured in millimeters, decorating both grey and white matter. Might their recent appearance have to do with the fact that initial treatment of the lymph node was so long delayed? Might their metastatic origins have been in said node? No one can say for sure, but one might have one's theories.

What to do? More radiation.When? Next week. 

The fabulous folks at the Sarah Cannon Center are gonna get all Marie Curie up in la cabeza loca.

I've actually been thinking a lot about Marie Curie in the past few weeks. Discoverer of two elements, radium and polonium, she won two Nobel Prizes, one in physics (which she shared with her physicist husband Pierre and physicist Henri Becquerel) and one in chemistry. She carried tubes of radium around in her dress pocket as she pioneered early research in the use of radioactivity to treat cancer and studied how to use X-rays in medical diagnosis. During World War I, she procured and rigged up Renault trucks with radiological equipment, taught a bunch of women how to take X-rays, and sent them off to diagnose wounded soldiers on the French battlefields. Folks called the mobile radiology clinics Petites Curies. She worked in a field dominated by men, and while some of those men caused her endless troubles, her brilliance and diligence set her above pretty much everyone working in the physical sciences at the time. 

I've also been thinking about the fact that my care team is made up pretty much entirely of women. Sure, some of the techs and nurses and at least one of the radiologists who reads the MRIs and CTs are men, but my regular onc, my rad onc, the medical physicist working with my rad onc, and my PCP are all women. 

One night, I had a dream that my rad onc and Marie Curie met up in a cozy Parisian bistro for drinks, and I was their server. They got a little rowdy (no doubt my rad onc was the instigator), and I joined them in cussing out the French Academy of Sciences for not admitting Marie in 1911. Yeah, well, I have four brain tumors; I can have any kind of dream I want.

And speaking of women in science, here's Maeve, my radiation mask. 

She's named for a certain character in a certain HBO series that I quit watching about halfway through the second season, and if I had chosen another female character from that show to name the mask for, it might have been Dolores, but that's my mother's name, so that would have been weird. Anyway, Maeve will keep my head quite, quite still as I undergo several Cyber-knife treatments – or CK as they say at the clinic – over the course of several days, beginning on Wednesday. CK is very precise, targeted radiation, aimed to hit the li'l spots and only the li'l spots, and to leave the rest of the brain tissue undamaged. And that's good, since it's my brain we're talking about here; I'd like to keep as much of it intact as possible, because I don't really have much to spare.

If you're a praying person, I'll ask for your prayers now. And if you're a vibing person, I'll take all the good ones you can spare. 










  And so, another year around the sun. Here I am again with the few remaining blossoms on the “memorial” cherry tree we planted 7 birthdays ...