Not Another Doctor. Anything But That.

April 18, 2013 at 10:13 pm (Uncategorized)

My left leg is numb. It’s like someone flooded everything below my knee with Novocain. I’m stumbling on it, and have taken a couple of nasty falls when I can’t maneuver on the stairs.

It’s probably the neurosarcoidosis—that evil presence embedding itself in my brain and on my cranial nerves, causing vertigo, episodes of blindness, shrill ringing in my ears, and pain like none I’ve ever experienced. But what if it’s not? The assortment of immune-suppressants I’ve taken for the past nine years make me much more susceptible to various frightening cancers than the average person. What if some new foe has decided to pay my brain or nerves a visit?

I suppose I should find out if I’ve got some tumor growing in my head. Which means I should probably go see a neurologist, preferably one who’s at least heard of sarcoidosis. This means medical travel—the least exciting and most exhausting form of tourism on Earth. I hoped I could just go see the Sarcoidosis Guru in Ohio. He manages my treatment. But he’s not a neurologist, and he cautioned that if I signed up to get seen by a neurologist at his big teaching hospital, I’d end up becoming a guinea pig for all the fledgling neurologists in training.

I’ve been through that teaching hospital drill before. Having a rare form of a rare disease means that you are an Interesting Case. All the neurologists-in-training (adolescent White Coats) are summoned to gawk at you. Their wise elders think perhaps you’d be a good data point for their next paper or grant application. So they test the hell out of you, especially when you have private insurance.

I can’t go through another round of testing for the sake of testing. I am exhausted from nine years of sickness, treatment, and doctors. For the first few years, I endured the teaching hospital routine. I wasn’t experienced enough in Chronic Town to have learned the key question to ask when the wise elder specialist at the head of a pack of baby White Coats proposes to scan you, shoot you full of dye, hang you upside down, cover you in electrodes, jam needles in your extremities, hook you up to monitors, try to induce seizures, try to induce fatal heart rhythms, give you hand weights to pump while trying to induce fatal heart rhythms, and/or siphon off enough blood to feed a pack of hungry vampires—all of which, in my confused hope they would help cure me, I agreed to. The million dollar question to ask before they run a million dollars’ worth of tests on you is: Will the results of this test change your treatment recommendations? In other words, are you studying me for the sake of studying me? Or will whatever expensive and unpleasant test you are proposing actually help me?

The Sarcoidosis Guru thought a neurologist in Salt Lake City would be the closest and best place for me to get my dead leg evaluated. So in June, I am heading down there, even though I really don’t want to. I’m practicing reciting my million dollar question for when this guy says he needs to perform a test. Even so, I know I won’t leave Salt Lake City without being scanned and poked and probably bled. Some testing is going to be necessary to try to get to the bottom of the numbness in my leg. I know this. But still, the idea of it—donning the stupid, flappy hospital gown, having my blood drawn, hearing the thunk and whine of the machines, reciting my medical history—just makes me more tired than I already am. And I’m pretty darn tired.

I have a couple months to practice, though. Will the results of this test change your treatment recommendations? If the answer is no, I will say politely but firmly: No thanks. I am not a data mine. I am a person.

I can do this, right?

Have any of you had experience being tested for the sake of being tested? How have you dealt with this?

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Holding Hands

April 4, 2013 at 12:40 pm (Uncategorized)

“Spring is like a perhaps hand…”
By e.e. cummings

Last week, Jay held my hand for a while. We didn’t talk much. We just held hands. After being together for seventeen years, we’ve learned that we don’t always need to be manufacturing words to communicate.

Truthfully, even if I’d wanted to summon my inner raconteur—assuming that facet of myself is still in there after 9 years of motherhood and chronic illness—I’d have had problems. A few minutes before Jay arrived at the hospital to visit during my monthly chemo infusion, the nurses gave me a lot of IV Benadryl to help keep my body from reacting to the bag o’ poison that is the protocol for managing my systemic sarcoidosis. My tongue felt like a slab of meat, and my eyelids were heavy.

“I’m sorry, but I’m very drugged,” I told Jay as he pulled a chair up to the recliner I was splayed out on. At least, that’s what I tried to tell him. It probably sounded more like, “Limes are forty, slut tied ham, cheery pug,” given the quizzical look Jay gave me, before murmuring, “Shhh. It’s OK.”

And then he took my hand.

He brought with him the smell of early spring. His hands were cold. They felt wonderful, as they covered mine. Even though Jay is a paper pusher—or keyboard clicker—by profession, his hands feel like a worker’s. He lifts weights, so his palms are ridged with calluses. The skin on the tops of his hands is dried and rough. We maintain a zealous hygiene routine in our house in the land of the immune-compromised. Jay is meticulous about washing his hands, or bathing them in gobs of hand sanitizer when he’s in the car. He’ll do anything to keep me safe, to the point that in the driest and most germ-infested weeks of winter, his skin cracks open and bleeds from all the washing. I nag him to use hand cream. But he’s too busy, he says.

In my Benadryl-induced fugue state, I got lost in his hands. I liked the roughness of his grip. I liked the feel of his tendons stretching to let his fingers weave through mine. I liked the bulk of his wrist bone, the hard edge of his nails. I liked the sense that his hands were bigger and stronger than mine, that they could cover me and protect me.

I couldn’t think or talk, but the Benadryl didn’t knock me out. The three other infusion medications on the day’s roster tend to amp me up. I start to feel sick and agitated from the chemo long before the bag is done draining into me. The Benadryl prevents my throat from closing in an allergic reaction. But it doesn’t give me the gift of sleeping through the seven, or eight, or sometimes nine hours each of my treatment days requires.

It’s taken some work for Jay and I simply to hold hands, skipping the informational swap-meet that parenting and marriage can become. We’ve both learned that not everything needs to be said, or even can be said. This latter was a particularly hard lesson for two aggressively verbal people. But there is pain, joy, hope, grace, humor, and hopelessness that refuse to be bound by the edges of letters and words. There are moments in Chronic Town—in any town—that dissolve language. Jay stayed and held my hand, even as he could have taken up a dozen “practical” tasks with his. There was a boy to shuttle to a Lego Robotics class, dinner to get on the table, laundry balled up and waiting to be sorted. There is always work to be done.

But holding on to each other through the drip-drip of the Rituxan into my veins, through the fatigue of chronic illness and parenting and stressful jobs, through our fears, are work of their own kind. It is work hands can take up.

Stillness – the ability to just be with another person – doesn’t always feel natural. We’re trained to swoop into a situation and fix it. We’ve got to bat down the thousand “helpful” ideas that bombard the stillness. Ask the nurses why she’s not asleep. Is she going to react to the chemo? Send a work text about a crisis at the office. Tell her to relax, that it’s OK. Ask if she wants a pillow. Or a cup of water. Does she want her ipod? I bet some music would take her mind off this problem. These are things Jay did not say to me. Instead we held onto each other. And it was good.

Staying with me—in that place beyond words—meant that Jay was truly with me. When someone executes a to-do list about and around you, it can feel lonely. I did not feel lonely, as Jay twined his fingers with mine and watched the medicine drip. I was held.

His hand in mind, his steady grip during some of my most-difficult hours, was a gift beyond measure. He showed up to my crappy day, and stayed there. He held my hand.

“I love you, Jay,” I said later.

“I’m a honey-dew day,” he probably heard, as my useless tongue made nonsense Benadryl words.

“Shhh, I love you,” he said. And I could feel his pulse, constant and warm, flow from his wrist to my mine.


Have you ever been in a place beyond words, when you really needed someone just to hold your hand and be with you?

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