Caught in the U.S. Healthcare Maze

by Ute Carson

Part 1 appears in this issue.

conclusion

Maybe Dr. C only intended a simple warning, explaining positive and negative margins, but to me it sounded like a threat. “If the margins around the cancer are not clear, a second surgery will be necessary and maybe a mastectomy.” For once he held his breath long enough to stare into my eyes.

I made my way to the swamp again, sidestepping obtrusive thistles. The morning was drizzly but the dampness did not deter me. I had become obsessed with the possibility of a second surgery. I still had my first one ahead of me. Presenting the possible hazards was fine but why the intimidating remarks?

When Dr. C had noticed my apprehension, he got tough. “Well, we have a pill for the demented and for old women. Do you want that?” I retreated and timidly shook my head. What I wanted was a lumpectomy. I had no choice but to trust him. On his way out he hissed, “Contrary!” Inwardly, I stomped on the cold examining room floor with the heels of my shoes, and cursing!

I had moved to the edge of the lake, letting my feet dangle in the lukewarm water. I had devoured one oncological journal article after another. Only one had been sympathetic to my view. I ripped out pages and made paper boats and set them afloat. A chorus of croaking toads responded and swam toward the strange display.

H beckoned. “Get on the diving board and take the plunge. You can’t know the results in advance.” She was right. I had to put a second surgery and a mastectomy out of my mind. I got up, balanced on bare slippery soles toward the end of the diving board, bent at the waist, ducked my head and jumped, disappearing among the algae. I came up for air. The abundant greenery soothed my eyes and my anxious body. Waterlilies floated with ease among unfurled leaves. I would take the dive into surgery. Maybe my margins would be clear.

What Dr. C thought of me and my contrary views aside, he did a flawless job. He had stitched up the scar with fine precision. It looked like needlepoint. The fog of the anesthetic lingered, but the good news of clear margins penetrated. I was overjoyed. If only I could give that gift to other worried women. No matter how lopsided my breasts, how swollen, bruised and reddened my skin, I still had two breasts. I would heal from the lumpectomy.

Leaving the hospital took me longer than expected. I had woken up slowly from surgery and was in no hurry to get dressed. “May I help you?” A kind nurse asked at the open door. “We have another patient coming in. Your room is recommitted. You have it for only half a day.” I slipped into my shoes and departed holding onto my husband’s arm.

As far as my oncologist was concerned I had been in the trenches, but only in trifling ones. Her concerns were with the severely afflicted. I couldn’t blame her, but I felt abandoned, “I know my cancer is not life-threatening, but it’s mine.” When she mentioned that on return visits I would see her physician assistant, I balked. I had been from doctor to doctor, nurse to nurse, scheduler to navigator, in institutions run by five different corporations. I wanted my doctor, not a substitute, no matter how good their qualifications.

In my wanderings from doctor to doctor, from clinic to hospital, I had more than once encountered different approaches to the same diagnosis. The right hand often did not know what the left hand was doing. There was little sharing of information between specialties or with my primary physician. My surgeon suggested that my swollen breast be drained, my oncologist advised against it. Whom should I trust? It was not medical information that guided me in these instances but my own intuitions. My breast had been poked enough. Let the body absorb the fluids.

I floated on a large waterlily leaf upon my swampy lake. I was drowsy. I had been given too many medications. My arms were looped over the side of my makeshift boat. I rowed with them. I also used my arms as stabilizers when we started to tip. I was lethargic and in a dreamlike state. Following a near pain-free lumpectomy, the complications began to appear, along with nerve pain and a rash. My immune system was down. I was told by a nurse that maybe I had shingles.

As on a merry-go-round, the five doctors rotated by. There was a primary physician, a cardiologist, an oncologist and two breast specialists. Who would take care of shingles? The breast surgeons and the oncologist said, “We don’t treat shingles.” The cardiologist was worried about the stress on my heart but not about shingles. Like a ping-pong ball, I was paddled back and forth. Stretched on my waterlily leaf, I was bait for swarming mosquitos, biting, leaving itching welts. Birds circled overhead diving to stab at my ribs with their beaks. Symptoms of shingles?

I propelled myself with all my might in the direction of my general physician. The treatment of my shingles had been delayed for days. I worried about the wait. Finally I spotted him on shore. His shoulders slumped, his strides slackened. Had the navigator not warned me that all doctors were overworked? Desperately, I wanted to reach him. I considered myself a trooper at tolerating pain, but the shingle attacks put me at their mercy.

Finally, my boat touched land. “I am waiting,” my primary physician greeted me in a measured tone. He was not faultless. But when I cried out, “Where is this pain coming from, shingles or my healing breast?” he answered, “It’s hard to say.” He followed through, trying out combinations of pain medications. And he stayed at my side. I was comforted by this but, at night, I felt the birds’ stabs. And days were still a challenge. Would it get better if only I held out through one more revolution of the clock?

Gabapentin, Advil along with Prilosec would do the trick. But my neuropathy also flared-up, a companion to the shingles’ pain. One day my healing breast swelled and turned fiery-red. Was it an infection? Like sand running through an hourglass, guesses trickled in. The final diagnosis was an internal bruise. Shingles was labelled post-herpetic neuralgia. Advil was suddenly the enemy. Now only Extra Strength Tylenol could help with healing. My primary physician had solved as much of the puzzle as he could. I waved good-bye to him as my oxalated leaf drifted away from shore. From afar I saw him leaping into the air doing jumping jacks!

I rested, sprinkled drops of lake water on my blisters. “It all takes time,” a nurse told me. Was I getting depressed? It had been ten weeks with little relief. Suddenly I felt a touch like the beating of a butterfly wing on my afflicted skin. Assistant A was hovering above me. “I retrieved a note from you from the letter box,” she whispered. “I ambled by the box. It was overflowing. I picked up the notes scattered on the floor.”

“And mine was among them?”

“Indeed,” she lowered her voice again. “I can explain why you had a neuropathy flare-up after the lumpectomy and why you continue to have shingles, nerve pain and a bruised breast. It’s all connected. Did you ever mention your underlying neuropathy?”

I swallowed, “Many times. They overlook it by pointing out that I’m not diabetic!” A’s left wing fluttered but she continued to explain. And I was grateful that someone was finally taking the time to answer my questions. Then A had to leave. I touched one of her lactiferous wings ever so lightly. With a little help, my body would heal itself. My lungs filled with the sweet steam rising from the lake. I was exhausted from juggling medications, different approaches, several doctors, and the pain. My eyelids grew heavy. I fell asleep, a deep restful sleep.

Being old, my recovery was slow. The healing dragged on, and I lacked stamina. But I was lucky. No chemotherapy, no radiation. Still, I needed a break before considering next steps. My cancer recurrence rate was projected at 18%. If I took a monthly hormone pill I could cut that percentage in half. But what do percentages mean in individual years? The side-effects of a hormonal blockage are numerous. What would I do with brittle bones, hot flashes, weight gain or insomnia? How much was I willing to gamble?

I found myself again at the lake’s edge. The sun was setting. I stretched out in the evening lushness, smelled damp earth and reflected. A fly tickled my nose and the wind dried my toes. Since losing sight in my left eye, my balance had been wobbly. Would my bones turn fragile? Cancer-free, a fall, then in a wheelchair? What were the tradeoffs?

A humming broke into my thoughts. It was A again. “Remember that there are hormone pill options. If one doesn’t work, ask for another.” And then she sighed, “It’s a good time for young and middle-aged women to be treated for breast cancer. We can save many lives. For older women, it’s tricky, always other frailties to consider.”

“How true,” I answered back in a low voice, quivering with gratitude. Why had no one mentioned the simple option of several drug choices? A melodious breeze swept through the grasses.

For me the cancer diagnosis was not a wakeup call. I had long placed my life’s center with my husband and the desire to see our grandchildren grow up into fulfilling adulthoods. “Try the blockage for a month. See what side-effects bother you,” Dr. B suggested. Maybe that’s what I’ll do. Or I will toss any further treatment to the dancing winds. I remembered Dr. V saying after the biopsy, “You are in the driver’s seat. Never forget that.” Morning will arrive with a solution and a fresh start.