Monday, July 5, 2010

Symptom Management

“Well, we will all have to deal with something,” I said, my voice flat with resignation. “Some will deal sooner than others. Fifty feels a little too soon…”

“It IS!” he interjected, so unlike himself.

I shrugged, “It is, what it is.”

We discussed chronic disease, that we had arrived at the decade when those diagnoses were abundantly bestowed, when we meet the thing to manage, the dance with the dragon… from this day forward, ‘til death do us part.

“I love these,” I held up a two-bite pocket, clenched between chopsticks, for his examination. “The outside is pickled bean-curd. The inside is sushi-rice so it’s flavored with rice vinegar and seaweed.” I bit and smiled as spongy bean-curd gave up an extra squirt of vinegar. “Mmm.”

“I’ve sorta come to view my life like symptom management,” I volunteered.

In medicine, we have a term: symptom management. When medicine is not curative, our efforts are palliative, aimed at minimizing symptoms: pain or immobility or breathlessness or any myriad of ails that, if reduced, might add quality versus quantity.

“And the more I look,” I continued, “The more I realize my whole life has been about symptom management. I am always managing symptoms, be they physical or emotional or spiritual. I am always trying to reduce my discomfort at every level. Only now, some of my friends have real disease and their quality of life is affected and their quantity is predictably shortened and…” Tears flooded my eyes and spilled down my cheeks, “And I don’t want to think what life will be like without them.”

“Now you’re worrying about something that hasn’t happened yet,” he offered, his look sympathetic, his voice pleading.

He was, in every way, the picture of beauty and health. He rarely complained and seldom volunteered health information. That we periodically met for lunch satisfied my need to know that, while his disease progressed in relentless fashion, while he circumscribed his schedule to match energy reserves, his outward appearance remained stable.

“I know,” I smiled weakly. “I don’t go there much – until I do.”

I eyed the deep-fried, crab and avo nori-maki on my plate. “Did you try one of these?”

He shook his head, “I can’t have the flour.”

“Bummer man,” I grinned.

To cut expenses, many Eurasian restaurants use wheat in lieu of mochiko, rice flour. Their tempura is notably soggy though undistinguished by undiscerning palates.

“I shouldn’t have deep-fried but I’ll have just one,” I licked my chops and skewered the disk with chopsticks.

“I asked Laird about his Dad recently and he said, I think he’s waiting to die.” Laird is a hiking buddy trying to assist his Dad in West Virginia, from California. I know the feeling. His words: waiting to die, stopped me, dead in my tracks. Do we reach some point when death is indeed anticipated and welcomed? I think we do. What does waiting to die feel like?

“I saw my Uncle Moon Chee; he’s 96, a tiny, little thing with sharp eyes and a sharper mind. He’s like – this tall,” I held my hand up to about four-foot-ten. “And he’s so frail now. Thirty minutes after touchdown in Honolulu, I plopped on the couch and asked, How ya doing Uncle? And he said, Oh, I’m getting old.” I guess! His body is failing on many levels now.

“And then of course, there’s my Dad. Last weekend I had the DNR conversation with Mom. His Advance Directive says DNR but hospitalized, with discussions of burr-holes, his DNR was rescinded. She said, As long as he enjoys his children and grandchildren, I think we should treat him.”

Fair enough. Not a bad measure. When he no longer knows his family, we withhold heroic measures. Meantime, manage his symptoms to minimize physical and emotional dis-ease.

“So all this is kinda in my space,” I said. Our plates were empty.

“I’m going for some hot Chinese,” he rose.

“You mean that greasy, hot food-line over there?”


“Nasty!” I grimaced in disgust.

He turned and sneered, “What-ever!” We burst with laughter.

“A friend recently returned to work after lumpectomy, chemo and rads for breast cancer found on digital mammo.” I started again once we sat before fresh plates of sushi, sashimi, green seaweed salad for me, hot Chinese for he. “Her cancer was detected extremely early; her prognosis is extremely favorable.” All that being said, she was not spared the episodic depression and fatigue embedded in the therapy cascade triggered by that diagnosis. She manages her symptoms and dove back into work and life. What else can you do?

The beautiful boy has a curious method of arranging his hand to chopsticks, an intriguing way of standing them upright beneath his left palm while weaving his right fingers around the slender sticks. He did that beneath my watchful eye as I labored toward the coup de grĂ¢ce. He knows this about me, that things percolate and simmer and finally boil over into our conversations. He let my lament continue uninterrupted.

“I got a devastating email two nights ago," I said, propping my chopsticks on the edge of my plate. "I haven’t slept since.” Following my lead, he laid his down too. “A physician friend of many, many years, almost twenty. She’s me – slender, athletic, and she’s lived well: never smoked, moderate alcohol. Was in her usual state of health – an asymptomatic walkabout. Felt a lump in her belly on Mother’s Day… metastatic ovarian cancer. They did a huge abdominal surgery... they gutted her," my voice cracked, "Total hyster, partial bowel resection, splenectomy, chole, appy, then stripped and de-bulked everything they could for tumor shed.”

I awoke at 0213 in a tearful sweat, my hands pressed firmly into my abdomen, palpating.

“She started chemo the other day. They’re inserting a peritoneal catheter to mainline chemo directly into her belly. Her prognosis is… poor. She said she’s sad for the things she won’t get to do with her boys.” I dabbed my face, transferring a long, thin trail of tears to my napkin. “None of my friends have died yet; I don’t want her to be the first and I don’t want anyone going before her.” We chuckled at the ridiculousness of my statement. They will manage the symptoms of aggressive treatment and hope for the best.

“We’re at that age,” he said softly. Aye matey, we are that.

“Thank you for letting me dump all this on you.” We rose to leave.

“Of course,” he said. “You should. I want to know because it’s important to you.”

His statement rocked me and I responded slowly. “Thank you for holding what’s important to me as something important to you. I know you don’t like talking about your health but I have come to know that sometimes, just sometimes, I can’t hear a word you say until you tell me how you are, how you feel, and how you are managing symptoms.”

“I know this about you,” his head twitched imperceptibly, as it is wont to do in mild discomfort, “And I include it in our game.”

We hugged; his cheek smooth against my lips. I paused and stored for safekeeping, his every nuance.

How do we live well if we must live sick? We symptom manage. Am I living life fully or waiting to die? How do I give meaning to my remaining moments, ‘til death do us part? And what am I doing today to forward that?

Today my life is all about me and symptom management. Today I manage my grief, my insomnia, my wellbeing and physical health. I’ll write, bike and run - dual workouts and triple play, baby! Today I’ll manage my schedule and purchase a round-trip ticket so that I might see my girlfriend and say, I love you. Symptom management at its finest.