Interoception

The New Yorker introduced me to the concept of interoception last week. It's simply our ability to feel what's happening inside our bodies. A "portmanteau of interior and reception." A consciousness about our own body's inner processes. A breakthrough to the surface: the body is exhausted--we think: I'm so weary, I need sleep. An unconscious knowing: our brain detects high glucose levels in our liver and releases hormones triggering metabolic changes. A response on the part of our bodies and minds to what will happen next, a forecasting of the future. This last idea confuses me: is this kind of interoception unconscious or conscious or somehow both?

The article spoke of cancer, but not in the way I needed. A study suggests tumors consume huge amounts of energy and interoception might offer a way to alert us to cancer earlier. Totally unconsciously, so measured by what? Changes in blood measurements? I don't know--the research is in its infancy. 

What I needed to read was that interoception might forecast progression. I have pain in my sacrum and spine, and in my scapula and shoulder, a kind of pain that is a constant companion, a noise in my body I can muffle with pain medicine, a noise that can take up most of the space in my brain if I add exhaustion or a missed pill. I'm told this pain will accompany me until I die--the bone in these places is scarred by cancer and by repeated radiation, and the disease and the cure have left the bones scarred, jagged, pushing on my nerves. I imagine my bones as shards, like stalagmites, held together in a cruel, lacy pattern. Does the pain signify more than just pain? The question of the hour, every hour: is the cancer progressing? And then: is there anything left in my oncologist's playbook for me? 

I started a clinical trial three or so months ago, after a harrowing fall and winter, filled with surgeries and recoveries and drug changes, and a depletion of self that makes me label this year as the hardest yet. [Remember, of course, that my years begin in September, with the start of school. January is just another month.] I think selective memory, the kind of memory that allows you to softly erase the pain of childbirth and plunge back into ten months and then more when the baby arrives, of keen awareness of our swelling, cramping, vomiting, bleeding, milk-leaking bodies, anyhow, my selective memory elides over other hard times in this six-year journey. Perhaps I think every year is the hardest. 

Clinical trials. Sometimes people from the non-cancer world get excited about clinical trials. The exciting clinical trials are exciting only in hindsight. As it turns out, this new drug gives most people more time! With fewer side effects! 

Every drug starts in clinical trials, my sweet friends tell me, exhorting me to be hopeful. You don't know, they say. My trial is at stage one, which means the investigators are trying to figure out dosage. How much is too much, by which they mean, what is too toxic for the bodies in the trials. My platelets bottomed out when I started the trial, and the clinical team halved the amount of drugs. Now my platelets are holding steady at an acceptable, which is not to say robust, level. Sure, the study will provide more data than simply dosage, but this phase of the trial is not about efficacy. 

People forget that many clinical trials end quietly, without fanfare. People forget about different arms of studies and placebos. People forget that clinical trials mean you are no longer following protocol, no longer taking advantage of the tried and true avenues of treatment. I have dreaded this time of clinical trials since I was diagnosed and now it it here. Sometimes, people even forget that nothing I've taken or am taking is curative. Despite all my re-centering of the hype over clinical trials, I admit I'm cautiously hopeful. Interoception? 

My palliative care nurse adjusted my pain medicine last week, and told me I have a pattern of telling them about pain, having scans, and no cancer progression shows up. Repeat, experiencing pain and clean scans. Then, finally, the same scans, and progression. She says my body knows the cancer is growing before the equipment can pick it up. Is that interoception? 

Remember when I was driving to work, sleeping in my car in the parking lot, depleted from the commute, ordering weird pillows to sit on because my back pain was relentless, going into urgent care storefronts in strip malls to double-check I wasn't having a heart attack because the pain in my sternum was so loud? My body was telling me something. Something is wrong. Hey mind, you have metastasized cancer in your bones. Interception failed because I did not listen to my body. Or perhaps it was working, the system worked. I felt the pain, but then failed to act. I just could not make time to listen. 

What does it mean to construct a world without a body, a world of my mind and the important work I do, and the lovely, sprawling family I want to serve, a world of productivity when the actual world is falling apart? The actual world is, in fact, embodied. For me, embodied in a body filled with cancer. I'm borrowing from Jenny Odell, of course, who asks what it means to construct a digital world when the actual world is crumbling before our eyes. [Can't recommend How to do Nothing by Odell enough.] I'm not sure the borrow is apt, but I do know separating the mind from the body is a doomed approach to living. And dying. 

Although the pain makes me imagine the tap-tapping of the cancer (and no worries--it is muted now with a recent uptick in the pain meds), I also feel some renewed energy and joy at being alive which I associate with better health, even good health. As I like to say, the only thing wrong with me is stage four cancer. I can't walk far right now, but I do get out and walk the dog on these mini-walks. He is baffled when we turn around and head for home. Seriously, lady? This is a far cry from the me post-surgery on my left femur, where a plate was inserted to shore up the cancer-riddled bone. When the physical therapist asked me to stand with both legs, I could not even imagine how that was possible. I needed a walker to get from the bed to the bathroom, dragging it right up to the toilet. And now, Sebby and I walk five or seven minutes at a time down the road.

I think this time the pain is just pain, not pain forecasting progression. My answer to the pain is so much rest, and a wonderful chair cradling me in my kitchen, and of course, pain medicine. I think my energy for writing, my appetite these past weeks, my staying up until it's actually dark outside all portend nothing. And nothing is good. 

Instead my body is telling, or allowing, my mind to engage mightily with words. I am a reading tornado, with several books going at once, and I am writing: here, elsewhere writing about the stages of grief, elsewhere writing spells into a grimoire, elsewhere journaling. I think my body is telling my mind it's hungry, and I'm eating club sandwiches, and toast with jam, and salads with salmon and dried cherries, and allowing myself peanut butter (forbidden in our house but that child is away at camp and won't know I ate chocolate and peanut butter ice cream until he is in his twenties and decides to look at his mother's blog). My body is telling my mind I'm not too exhausted to watch just one more episode of The Bear. Which is a long way of saying I believe the drugs in this trial are working, or at least, that the cancer is not progressing this summer. I'll find out for real when I have scans at the end of the month. But for now, I don't think I'm missing any signals available to me. Let's find out, shall we? 

Of course, all this rested mind, rested body hoopla could just be what it's like to be me without the boys here. They have been at camp for three weeks now, and return next week. You cannot imagine the silence in my house. I can hear bird song through the windows, especially the forlorn call of the mourning doves. At night, the coyotes congregate in the corn field across the street from my house, creating a ruckus that makes Sebby crawl into bed with me. The dishwasher hums. The house settles. These are the noises without the boys home. 

Every Thursday and Sunday the camp posts hundred of photos of all the boys at this camp in New Hampshire and these photos could plausibly be from anytime in the last 100 years. Just boys swimming, playing baseball, singing in the dining hall, getting their cabins ready for inspection. The boys have to write a letter every week, and we know they are happy and also miss us, and what more could we ask? Every morning they do the polar bear swim before breakfast, and both of them have passed the 1/2 mile open lake swim. Eli wrote he really needs his sailing license. Asher tells us he loves archery. These skills are not immediately transferable to Carlisle, but good for them.

I went to Girl Scout camp every year I could, until I wanted to be a counselor-in-training. You had to be 16 to be a CIT at Girl Scout camp, but you could be a CIT at fifteen at YMCA camp, so I jumped ship on the Girl Scouts. I loved the evening campfires with the whole camp and the songs. And the sound of the horn playing taps into the cooling Ohio air. Day is done. Gone the sun. I'm certain this camp played taps at night.

You may have heard there is a chemo shortage. It's a revelation to discover that no one was asleep at the wheel, in fact, there is no wheel, no centralized anything watching to make sure we don't run out of chemotherapy drugs. If pressed, I would have guessed this fell under the auspices of the FDA, but of course, like the baby formula shortage, no one is watching the supplies and the demands, or giving a hoot if these drugs are being made at a sub-par factory in India. The FDA has data on which 11 or 14 cancer drugs are in short supply, and the American Cancer Society issued a warning in May that chemo drugs had returned to the list of the top-five drugs affected by shortages. But I have yet to read about solutions, about a cure to the shortage. I like to believe its in the works, but I have heard the shortage may continue for more than a year. Such a shortage means hospitals and doctors have to prioritize who gets the treatment, and the guidelines hospitals are using highlight the fact that chemotherapy for stage four cancer patients is not curative, but palliative.

Now, there are those who talk about non-small-cell lung cancer as a chronic disease, and there are patients who piece together treatment after treatment and time unfolds for them--six years, then ten, and occasionally I hear rumors of someone who has lived twelve years post-diagnosis. When it comes to a chemo shortage though, someone with stage four cancer is not going to make the cut. The cut. The cut created by the rankings of order some hospitals and doctors are currently using to decide to whom to mete out chemo drugs. If you're lucky, perhaps you will have the time between treatments extended, or some other kind of drug may "tide you over." But an older person like me, nearing the end of available treatments couldn't and shouldn't take precedence over a younger person with stage one or two cancer. It's a terrible feeling to imagine your time deemed less important.

Why the fuss, you ask? I'm in this clinical trial, and I'm a little fearful, despite all my bluster, that it's not working and my choices after this are...another clinical trial or chemotherapy. My oncologist says that there are lots of chemotherapies to choose from and there may be appropriate clinical trials as well. I've been at this point before. More than once. Where I think the path is narrowing. But not today. Unless the coyotes barrel down the front door tonight, I'm awfully certain cancer is my ticket out. But not today. Could you reverse-interoception, where the body intuits from the mind, where wild hope defeats cancer cells?

Next Monday the boys come home from camp: unwashed, exhausted, full of spitfire and relief. That's three more days of reading, and eating ice cream, and casting spells for more time, less drama, more dreams, fewer unsettling nightmares, perhaps some weather reminding me not of climate change, but of long ago summers with the fireflies floating in the darkening Ohio night air, the orange popsicles, the games of freeze tag, the late nights in the canvas tent with the wooden platform, the other girls seemingly asleep, me reading a book with a flashlight. Was that every summer? Was that any summer? It was, it was, it will be.