November 2: Aches and pains

The pain scale (which of course makes me think of the excellent essay by Eula Biss), measures the intensity of pain a person is experiencing in a more or less standardized way that can be communicated to their doctor. A 0 is no pain; a 10 is extreme pain. In the middle is moderate pain, which I have always interpreted as "you can live with it". Note: this is not meant as medical advice. 

In a video appointment with my therapist A, she asks about my pain level. 

"I don't know if it's pain, per se," I tell her. "I mean, I'm uncomfortable all the time. Things are itchy and tingly, and sometimes it feels like my chest is being strangled." 

I can see her jotting this down, and also the surprise on her face, the slightly raised eyebrows. "So it hasn't decreased as much as we were hoping," she says. "But you're no longer taking pain medication?"

I could only handle the oxy for three days; it made me so loopy I couldn't be trusted to walk down the hallway without falling. I took the 800mg ibuprofen for ten days, then cut down to 400 mg until the bottle was empty. At that point it occurred to me that I wasn't in pain, just discomfort, which is maybe splitting hairs.

"It's hard to explain," I say, trying to explain anyway. 

**

A bit of Paula lore: 

In my late teens and early twenties, I had a condition that caused tissue to grow around a nerve ending, effectively pinching or pressuring the nerve, leaving me in a near-constant state of 6-7 pain that sometimes flared up to an 8-9. I became a frequent flyer to emergency rooms and urgent cares, where I was triaged as a low-level priority (I mean, understandable in the face of life-threatening emergencies) and I often slumped in a chair, sobbing, until someone would see me. For a year or so, until I was able to convince a doctor that I needed surgery, I took an unbelievable amount of painkillers. 

After the surgery, my life immediately improved. I felt, for the first time in years, normal. I wasn't tied to the bottles of naproxen sodium that I had stashed in my backpack and glove box. And I noticed something else: I had developed such a high pain tolerance that I rarely felt any pain at all. This was sometimes dangerous--I was nauseated when my gall bladder had issues, but never felt pain. (Finally my doctor ordered it out, since the ultrasounds kept revealing I was in a bad state.) Afterward, I didn't take more than an Advil. It was the same with my knee, years later. I never described it as pain, just weakness, like a necessary piece of support was missing. "Boy, you bounce back fast," people have said, but I suspect that's because my body doesn't know what's going on. 

So what's happening post-mastectomy is puzzling to me. I was sure I wouldn't even need painkillers, that the advice to stay ahead of the pain (take the meds on a schedule so I wouldn't suddenly be writhing) was well-meaning but didn't necessarily apply to me. Now, weeks out, things just feel... weird. 

"Everything hurts," I explain, trying to ward off a hug from a well-meaning friend, arms crossed over my chest. We bump shoulders, the closest I come to human contact these days. 

**

I try to explain it to A: it's like tingling, sometimes numbness. Things are itchy in one spot, and then a few minutes later, the itch has migrated a few inches in another direction. It's more discomfort than pain most of the time, but then I'll shift in my sleep and wake up with a gasp: why did that hurt? Why does it still hurt?

It's been three weeks since my surgery, and about nine days since my drains were pulled and the stitches removed from my nipple graft. I have been released to wear a "soft but supportive" bra, but sometimes it feels like absolute agony to have even a strip of fabric over my chest. I'm constantly pulling on straps, adjusting bands, itching here or there. 

A says she's just going to message the nurse navigator on my behalf, and half an hour later, C calls me. 

**
What you're experiencing, C says, is most likely phantom pain. 

I'm surprised. Of course I've heard of it. I'd associated it with lost limbs -- soldiers coming home from war, that kind of thing. It's a miscommunication between the brain and severed nerves: mixed signals, messages not received. 

"That's phantom limb pain," C clarifies. "What we're talking about is phantom breast syndrome." 

I have a new term to google. 

**

Phantom breast syndrome essentially works the same way as phantom limb pain: nerves have been damaged, and the brain has not yet processed the changes. This makes perfect sense to me, all of a sudden. My brain has been slow to process all of this. Yesterday, I realized it was November, and I had missed almost all of October. I couldn't tell you a single thing that happened in September except my diagnosis. Still, when I wake up each morning, there's a moment when I've forgotten, and until I begin to move and feel the first sting of pain in my chest, I'm still the old me. 

My brain has not yet processed the changes. 

**

The symptoms of phantom breast pain, according to breastcancer.org, are: pain and discomfort, itching, pins and needles sensation, tingling, pressure, burning and throbbing.

Yes, yes, yes, yes yes yes and yes.

Phantom pain is not just "in my head," C assures me. It's a real thing. "Your body went through a major trauma. You may want to move on, but your body is not ready." 

**

And so. 

Here I am, waiting for my brain and my body to talk to each other.