I had a rough week, this week. I came back from a transformative, restorative trip to Hawaii, where I did lots of creative work for Boing Boing and for personal projects. The morning after my flight home, I dove in to a week of medical tests. My primary treatment for breast cancer is complete (chemo/surgery/radiation), but that doesn't mean cancer's over. I have to take a drug for 5 years (or more, who knows), and there is at least one more surgery ahead that I know of.
But there is also much monitoring ahead. I have to get various blood tests and exams and scans every 90 days, 6 months, and annually. Scanning my body for any new cancer, scanning the horizon for bad news, and hoping it never arrives.
The big thing this week was tumor marker blood tests, which are used to see if your blood shows signs that cancer is returning and progressing. The tests are very much imperfect, a blunt and controversial tool. What they tell us is a matter of debate. Some oncologists don't even use them. Mine does, and I do respect why, and I comply.
When I received my tumor marker results, I flipped out, even though my oncologist's office told me they were "fine." The numbers showed a slight increase in my tumor markers. How the fuck can that be fine?
Bad numbers aren't supposed to go up. I cried. I panicked.
"Need to hear your voice," I texted my boyfriend. "Cancer test scared me."
I spoke to my boyfriend and my cancer shrink and cried some more, and then emailed cancer friends I knew would understand (they did). At some point I stopped crying.
I asked my oncologist's office for details. The numbers I got didn't make me feel fine. I got results that were presented as good news, but the whole process confused and upset me. Why do results from other tests for other tumor markers that my friends with other kinds of cancer get mean one thing, while the numbers from the type of marker we test for in my case mean something completely different?
If my number is up a little bit, does that number represent the first tiny step in a long stairway towards death? Or is that data point just noise, masquerading as signal?
I had to ask doctors (and fellow cancer patients whose take on medical math I trust) to help me figure out whether this score increase meant I was moving closer to dying, or was just a blip of fluctuation that told us nothing bad. It was the latter.
Does this sound like it would make you crazy? It makes me crazy.
If I didn't have cancer, my behavior around the tests would definitely be what you would call crazy. But when you have gone through the ringer with a disease that wants to kill you, and still may, it's not a crazy reaction at all. It's more like PTSD.
And as traumatic as it can be, scanxiety is better than the alternative: being dead, so there's nothing to test, and no odds to wonder about.
I was tweeting yesterday about how frightening and stressful the experience was (I do this sometimes, when I'm upset), and some cancer friends sent along links to two essays that articulate scanxiety beautifully.
Our Wait-and-See Culture, by Robert J. Abramson, in today's New York Times:
As the physicist Niels Bohr said, “prediction is very difficult, especially about the future.” But this is the exact position that many physicians and patients find themselves in. We must make life-altering decisions based on incomplete information. In my case, the decision to follow up in six months appeared to be the prudent one — and it turned out to be the right one as well. My six-month follow-up revealed the lesion unchanged. It was recommended that I follow up in another 6 to 12 months.
Welcome to the “follow-up culture.” The danger here is that we will always be living in the future: the scan was O.K., but what about in a year? No advances in medicine, as remarkable as they may be, will ever provide us solace for this predicament.
And yet, as disturbing as it is, it also provides an opportunity to live our lives to the fullest each day. As some Eastern philosophies tell us, life is like a river, in perpetual motion, and when we flow with it we attain a level of tranquillity. My patients and I will never know what the future holds for us in this new medical calendar, but my hope is that we can come to terms with the river, make friends with it, and allow it to teach us to be present in the here and now.
The essay describes a response Tom gave to a friend who said about Tom's periodic cancer screenings, “So, you must be used to it by now.”
It's not something you ever get used to, as Tom explains so perfectly here:
“It’s like every six months, someone holds a gun to your head, and they slowly squeeze the trigger. You can hear the springs in the gun compressing, you feel the muzzle shake a little as their muscles quiver, and you tense up, anticipating the explosion. Adrenaline pours through your body. You try to keep from shaking, from crying, because the gun exploded twice before, and you don’t want to go through that again.
This time, there’s a loud “click” of the hammer slamming down on an empty chamber. Just that sound explodes in your ears. Every muscle in your body jolts tight as the sound echoes – then rings away.
No bullet this time.
But it takes awhile to recover.
And no… you don’t ever get used to it.
My tests this week were the first time post-treatment that we compared new tumor marker data against previous (post-treatment) tumor marker data. So, the scariness was amplified by the fact that this process was new for me.
Another 90 days from now, when we test again, my reaction may be different. When we do the next mammogram, MRI, or other periodic screenings, my reaction might be different.
I do have good support resources.
I am getting better at coping with all of this as it goes on.
But that's just it.
It goes on. And on. And on.
To be a cancer patient is to be forever at the mercy of medical math.
It is not easy. And you never get used to it.
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Boing Boing editor/partner and tech culture journalist Xeni Jardin hosts and produces Boing Boing's in-flight TV channel on Virgin America airlines (#10 on the dial), and writes about living with breast cancer. Diagnosed in 2011. @xeni on Twitter. email: firstname.lastname@example.org.