I spend a couple of hours doing Cancer Things yesterday. Hung out in the CT room where they made a mold thing I will lie in when they zap those bad boys (tumor, lymph nodes), gave me some tattoos to mark where the beam should — and shouldn’t– go, got my radiation schedule. They call and coordinate with Dr. Oncology’s office about the first chemo infusion.
Then I got a coffee and headed over to get R. We headed out to
the gorge for a lovely, very windy hike.
The early wildflowers were out– camas, small lilies that dangled, unopened, on the ends of their stalks, balsam root, shooting stars, many many tiny flowers we didn’t know, plus some of the ones that looked like aliens. (Columbia Desert Parsley, center.) The camas were just opening, gleaming scarlet-purple when the sun shone through them, and pictures I found didn’t do them justice. On the way back, our hoped-for soft ice cream place in Cascade Locks was closed, so we settled for drive-through espresso.
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| Shooting Star |
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| Balsamroot |
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On the way out, I learned that the clinical trial I was interested in would accept me. Oy, more decisions to be made. Instead of starting with chemorads (chemo-radiation), it would begin with the immunologic Durvalumab. The Pacific Study established a new protocol for Phase III lung cancer (2014-2017-ish; (end of third stage results analysis), which starts with chemorads and is followed by a year of Durvalumab. The clinical trial I am considering aims to see if starting with the Durvalumab improves life expectancy (which, in all truth, pretty much sucks). The bummer: repeating all the tests (CT, PET, MRI) to establish base lines within the parameters of the study, delaying the chemorads by a month so the Durvalumab does its thing, and doing lots of extra monitoring.)
Dr. Radiology, whose research interests are all about immunologic responses (of which she includes radiation), says she would need to look carefully at the CT scan to determine if there has been growth since the diagnostic CT. If there has been, she would want me to start immediately with chemorads. Dr. Oncology concurs. (I had a 4D CT on Friday to see how the tumor moves when I breathe. Although the Dr. Radiology believes she didn’t observe changes, the 4D is not detailed enough to establish whether there has been change in the Bad Boys.
I think starting with the CT and assessing the status of the Bad Boys makes sense. I also an inclined to think I would continue with the trail. I have a 40% expression for PD-L1 (for the science nerds out there:
this article), which bodes well for a positive response to Durvalumab.
It’s a lot to digest, a lot to consider. For those of you watching at home, if it looks like nothing is going on, there is– it’s just a lot of intangible, nervous-making, stuff.
That’s why, when you ask if there is anything you can do, I say, as gracefully as I can, no, not really. Because the only thing that happening right now is that the pesky things in my body need to be gotten rid of, and none of us has the power to do that.
Seriously. I don’t feel sick at all, I have a great appetite (unfortunately), and I am exercising a bunch. That 7 mile hike in the gorge yesterday was lovely and restorative. Placing cobblestones along the front walk is a task mom and I are working to finish before the side effects kick in, but that’s going to be done by the end of today. I need to clean the bathroom this weekend and make a grocery list– it’s all the mundane stuff of daily life. (Oh. And some stuff to write for work.)
The the urge to do something is ingrained in our culture, I think, and it is very very hard to resist. A friend once told me, “Don’t just do something— stand there!” That is proving to be a strangely accurate description of our time, for me, my family, my dear friends.
There is nothing but prayer, good humor, living life well. The work, for all of us, comes in believing that is exactly, and only, what’s called for right now.
Please know that your requests to help, bring food, run errands, are deeply deeply appreciated, both for the willingness to do something tangible, and for the love and care they represent. But right now, they add to the decisions that already exist. When there is really big stuff going on, they feel like additional weight.
So, if you are a person who prays, what you can do is pray. You can take a moment and surround me in light in your thoughts. You can wait with me. That is everything for me.
But, if that’s not enough for you, send a note, keep me posted on what’s up– I need to get out of my own me me me me me head right now. Sending a note is easiest because of a new hoarseness that’s developed recently– perhaps a reason for concern and something to preclude participation in the trial– so talking is a little weird.
Once the side effects kick in, all of this may change. How can I predict that? I can’t. So, welcome to my life, where we wait, process volumes of information, and make decisions large and small.
And, feel enormously and profoundly grateful for sunlight, spring warmth and birdsong, and the amazing, boundless care of my Dear Ones.
Thank you, as always, for reading.
This is a big week, and I woke up thinking about you. Also, I had one of those dreams where you show up to the exam having skipped all semester and you have no idea what the answers are. This feels kind of the same.
This is *exactly* what this week, this day, feels like. I am so glad you were thinking of me– it was shaping up to be a rugged day for a while there.