Notes from a narrow room

The light through the window in room 2305 fades with the plastic blinds and they move, as if some unseen breeze generated by the beehive of activity in the halls, pushes them. It is a tiny space with barely enough room to turn around without hitting a door, stumbling over a wire or tripping over the bed. I’ve been sitting in this chair for nearly three hours watching Sue’s intermittent breathing go up and down, by fits and starts, as the hum of the hospital flows like a drug into her brain.

We came here Wednesday after Sue experienced intense abdominal pain. She’d been complaining of a gut-ache for a few days, but today, she said, was worse. I left school early and drove her to the emergency room where she waited until 1:00 the next morning to be admitted. During her stay in the ER, they did a CT scan and blood tests. The blood tests were not remarkable, but the CT scan showed a slight enlargement of her pancreas. She was miserable. I didn’t know what to think and tried not to, but it came to me soon.

Jarvis. Jean. Linda.

Linda is a survivor, a rarity in pancreatic cancer. It’s a brutal and swift disease and it moves ruthlessly and sometimes soundlessly, creeping up on its victims and attacking all at once, overwhelming everything and leaving no quarter.

It is hell.

And so I worried all that night and all the next day. But the blood tests again returned unremarkable and so I commented to the doctor, without affectation on the advice from a nurse-practitioner friend: “let me tell you my experiences and why I’m afraid……Is this what we’re looking at?

There was reassurance on a number of levels. The blood tests were the key to easing my clouded mind and Sue was awash in pain killer and anti-nausea meds, so she wasn’t interested. Promises? Guarantees? No such thing. But assurance.

Her eyes moved rapidly inside the lids and her face would contort into different shapes as uneasy sleep washed over her. One never truly sleeps at a hospital and mostly the rest one does get is from the medications prescribed. Her complexion changed with the current drug administered and she would vacillate from wan and pale to hearty and rosy cheeks, as though she’d just been on a bender.

On the third day, yesterday, full of medication, empty of food, the gastroenterologist said the wrong things. He didn’t ask questions about her past health history, which is complex and involves Hashimoto’s syndrome and thyroid irregularities as well as a primary immune deficiency. He was interested in her personal habits and he looked more at that than at the human being in front of him. Sue was incensed, with some cause, and she gave up. She shut down, as she does when attacked, and by the time I got to the hospital yesterday morning, it was all I could do to get her to be calm, to breathe deep and focus on the task at hand: an endoscopy and a CT scan with contrast had been scheduled by the offending doctor.

I spoke to the man, told him about who this woman was–asked him to set aside his pronouncements of “sometimes this happens and sometimes that happens,” asked him to concentrate on this person in front of him who is suffering. He seemed back on his heels–as though he considered her only and entirely from a clinical perspective. That has its place, I’m sure. But this is a person–someone who is greatly loved and I’d like you to consider that.

He did.

The endoscopy was unremarkable and, as was the suspicion, the CT with contrast indicated all the signs of pancreatitis. The remarkable thing, however, was that the blood tests were normal. Pancreatitis, while a complex process, is simple in its response: the pancreas, when offended or damaged, leaks enzymes into the blood streams. That’s all it can do–it has no choice. Blood tests reveal elevated pancreatic enzymes and, voi la, an answer. Sue’s blood tests were better the second time than the first.

No lesions. No tumors. No involvement of lymph or adrenal glands–the only thing to say was that she has a “mild” case of pancreatitis, only she didn’t experience anything mild about it.

It scared her–and me and our daughter. It forced hard truths about her health and how there really isn’t a pill or a drug that’s going to fix anything. If she is to have better health for herself, she’s going to have to take the lead on it herself and do the hard work. She knows that.

And as her health has been doing for some years now, it has knocked me back on my heels, frightening me into the fragile reality inside of this strong and capable woman. She has another chance now to work at change–as do so many of us.

So I feel the breeze a little more keenly today while I celebrate her and pray for hope for friends and acquaintances who need it. I’ll feel the sunset a little more palpably and I’ll watch as the cool Pacific breeze plays up against the hillside now visible from our new home.

And maybe, just maybe—she’s not the only one who needs the change.

Onward.