Thursday, August 25, 2016

A Year of Harrowing Drama for This Author


"Write what you know." For authors, that is the old advice on how to be credible to readers.


I've always tried to be true to that concept, especially when it comes to characters and plotlines. If there is action, I often call upon my own experiences when I dredge up descriptions of scenes, dialogue, and even action.


Some fans asked me what was going on over the last year of my life, when my writing stalled and I infrequently blogged. What can I say? "Take the last fifteen months of my life...please!" (There's my spin on the old Henny Youngman joke.) There have been so many difficult, dramatic, and even heartbreaking moments, my story sounds like fiction. And yet, it all happened. Here are some of the more pithy highlights:


"Can you get up to the lake? Something terrible has happened to your brother. He was in the middle of a business conference call and there was a loud crash. Everyone could hear him moaning, but he wasn't responding to their voices. They called the police and then they called me, but I haven't heard anything more," said my former sister-in-law breathlessly into the phone. I could hear the terror in her voice. "I'm so worried and no one knows where he is or if he's okay!"


"I'm on my way!" I promised. My trembling fingers rummaged through my purse in search of the car keys. "Dad, something's wrong. We have to get to the lake right away!"


I forced myself to focus as I put the pedal to the metal and navigated the winding roads. My apprehension only grew as my cell phone remained silent. There was no news. There were no answers. A terrible foreboding crept into my heart. This wasn't like my brother, not like him at all. In the passenger seat beside me, my father fidgeted, fretting about the possibilities.


"Hello....Hello!" I called out, removing the key from the lock as I pushed open the door and leaned in. My voice echoed in the silence of the empty house. There was no sound, save for the twitter of birds in the trees behind me. Cautiously, I stepped inside, not wanting to intrude on my brother's privacy, but having no other choice. "Are you here?"


The living room was in chaos. The floor lamp lay on the floor, its shade knocked askew. His beloved laptop sat abandoned nearby. The furniture was out of place. "I'm going to call the police. They must know where he is."

"Are you a relative?" the officer on the other end of the phone wanted to know. I assured him I was. "He was taken to the hospital. He was alert at the time."


Twenty minutes later, after leaving the car with the valet parking attendant, we hurried down the long labyrinth of brightly lit corridors to the assigned treatment room in the emergency department. As we entered, my brother glanced up and gave us a half-hearted smile. There were no visible signs of trauma, no obvious injuries. Relief flooded over us. He was okay, we told ourselves. The danger was over. Little did we know what fate had in store for him. That would come when all the test results were reviewed in a few days later. In the meantime, my father was about to get a very nasty surprise of his own, one that would permanently change his life.


"Look at the funny red bumps on my leg," said my father to me a few days later, pointing to the rash that had spread across the skin on his ankle. "What do you suppose it is?"


His rheumatologist knew right away. He had seen the spots when he treated my father earlier in the week. "It's shingles. I'm going to prescribe an antiviral medication. He's got to take all of the pills."


Apparently the steroids my father had taken to combat a severe bout of arthritic pain had depressed his immune system, allowing the herpes zoster to wreak havoc with his body. The pills were hard for him to swallow and they nauseated him. He was violently ill and soon became dehydrated. He also became delirious, jabbering away as he saw things crawling up the walls and creeping across the ceiling. The nerve pain was excruciating. Sleeping was impossible, even with the opioid medication the doctor prescribed. And then it happened. Thud! The sound of his body hitting the carpeted floor was horrible. I vaulted off the sofa and rushed to his side. "Dad, are you okay?"


Of course he wasn't. The two physicians stood in the exam room of the hospital's emergency department, armed with photos of exotic diseases. A quarantine sign was taped to the door, warning personnel to take precautions. They were concerned about the extensive spread of angry red blisters that started on the bottom of my father's foot and continued all the way up his back, so they called for a specialist to diagnose him. "Shingles. Herpes zoster."


The bad news? Those opioid drugs that were meant to control his pain had caused his fall. Now my father would have to manage to get through the shingles infection without any pain meds. It just wasn't worth the risk.


The next day, there was a second trip to the emergency room. This time, it was more serious. The physician gave him his heart medications and stabilized him. It took time to get things under control, but we were finally able to go home again. But there was no relief from the endless, mind-numbing, horrible pain. He cried out day and night as wave after wave of stabbing pain struck. The only thing I could do to comfort him was to sit with him. Time and time again, my father told me, "I wouldn't wish this on anyone."


"The tumor isn't benign after all." The cheerfully optimistic initial diagnosis for my brother gave way to despair as more tests revealed the truth. Radiation. Chemotherapy. Surgery. Complications. That nightmare was just beginning. The news hit him hard and knocked him for a loop. Just when he had found love with a woman who shared his interests and his sense of humor, just when life was finally going right for him, it all fell apart. And worst of all, I had to keep the news to myself. There was no way my father could process such bad news in his condition. It was too distressing for a man who was in a constant state of pain. I pasted a smile on my face and told my father that my brother was hanging in there.


"My foot isn't working," my father announced, not long after the rash spread from the sole of his foot, up his calf and thigh, and continued onto his back. There were even shingles blisters under his toenails. Walking was painful, but it was also dangerous. The offending appendage seemed to have a mind of its own as he tried to move forward. Had he had a stroke? The doctors said no. The consensus was "foot drop", due to the shingles virus invading his sciatic nerve. Suddenly handicapped, he clutched the handles of his walker as he shuffled from room to room, a man on the brink of defeat. What else could go wrong?


He went through his sleepless days and nights on automatic pilot, barely functioning. When he garbled his conversations, relatives and friends were convinced he had had a stroke. Some thought he might be "sun-downing" in the early stages of Alzheimer's. He lost his appetite, and with it, a lot of weight. But it was all the result of the debilitating pain of the shingles virus and sleep deprivation. He was a real life zombie, moving through a waking nightmare that never seemed to end. For the first two months, he never slept more than an hour or two at a time. I didn't dare leave him alone, just in case the delirium got the better of him.

As the weeks turned into months, my brother got used to the new limitations of brain cancer. His son got married in July. It was the last time we were all together as a family. He got married a month later. He and his bride renovated the lake house as they started their new life together. They were determined to have fun, to find the joy in every day, even as they dealt with his cancer. No more driving, lest he have a seizure behind the wheel. No more hiking in the forest either.


One day he insisted on taking a walk by himself. He promised to stay in the neighborhood, just to appease his wife. It was a good thing he did. An acquaintance found him a short time later, in a crumpled heap at the side of the road. His handsome face was battered and bruised, but it was his spirit that took the worst of the beating. He just wasn't safe any more on his own.


As autumn arrived, life appeared to be back on course. My father was able to walk again with physical therapy and a leg brace. But a troublesome spot on his foot turned out to be skin cancer. He was lucky -- his surgeon was able to retain muscle and tendon while cutting away the damaged tissue.


My brother's brain cancer seemed to be under control too. He spent many hours contently working in his yard. Every time we saw him, he seemed stronger...happier. And then I blinked. When I opened my eyes, everything had changed.


"Oh, damn!" I cried out one afternoon, on my way to drop off some paperwork. I spied that rumbling behemoth of an ambulance on its way towards me, its lights flashing as it ambled down the narrow road. The siren was off and the driver didn't seem to be in a hurry. Was that a good sign or a bad sign? When the driver pulled over to the side of the road to let me pass, I rolled down my window and peppered her with questions. Was she taking my brother to the hospital? She couldn't tell me. Confidentiality rules prevented her from sharing that information. I got clever. I wanted to know if his wife was with him. The kind driver managed to let me know that my brother's wife was still at the house. "Thanks. I'll catch up to her."


More seizures. More falls. More brain surgery. Experimental treatment. Anything to buy more time to live. We were not ready for him to leave us yet. He wasn't t ready to go. Back and forth to the hospitals. Back and forth to nursing homes to recover. An occasional trip home for a few weeks or a few days, until the fluid began to build up in the brain again, triggering more seizures. When would he stabilize?


"Um, there's some bad news I have to share," one of my nephews announced when he stopped by on a Thanksgiving visit. We didn't know what to expect, but it certainly wasn't this. "My mom has pancreatic cancer."


"No!" You could have knocked me over with a feather. It didn't seem possible that our family could have another tragedy looming on the horizon. And yet, here it was. None of us said it out loud, but we knew that the survival rates for this kind of cancer were incredibly low, especially for someone diagnosed in the later stages, as she was. My former sister-in-law was optimistic about treatment. The doctors wanted to give her chemotherapy. We all prayed that it would go well. And then came another one of those phone calls, this time from my brother. "I have bad news."


She had had the first few rounds of chemotherapy and seemed to be tolerating it well enough. But a massive stroke struck her in the middle of the night and rendered her unresponsive. The woman who had danced at her son's wedding just a few months before was now curled up in her bed in the hospice wing of the hospital. Day after day, night after night, the family sat with her as life ebbed from her disease-ravaged body. Just before Christmas, we gathered at her church for Mass and said our farewells, just a few short weeks after she was diagnosed. It felt unreal. How could she be gone? And yet she was.


In January, when the bitter winds whipped across the barren landscape, our hearts grew weary of all the heartache. My brother began to spend more and more time in hospitals. Fluid filled the void left behind by the removal of that malignant tumor, and as the pressure built up inside his head, it wreaked havoc with his already frazzled brain.

By the time the golden daffodils began to emerge from their winter sleep, it wasn't the cancer that was killing him -- the endless, ongoing complications were. He worked so hard to get back on his feet, only to have his progress come to a screeching halt by one problem after another. He developed aphasia and struggled to find the words he needed to care for himself. We struggled to communicate, wanting to alleviate his stress. Sometimes it worked, sometimes it didn't.


"Why doesn't my brother have access to water?" I demanded of the hospital social worker one day, all too aware of the repeated bouts of dehydration he had faced. The cleaning staff had tidied up his hospital room, moving his tray table out of the way, so he couldn't pour himself a glass and he couldn't ask for help. "How can he drink if he can't reach the water pitcher? It's bad enough he has so many complications. I'm not going to lose him to human error!"


The roller coaster ride from hell continued into the early days of summer. As my father improved, we talked. He had known all along that my brother's situation was dire, even as he battled the shingles virus. I didn't need to tell him the tumor was malignant. He encouraged me to do everything I could for my brother. He wanted the best for his son.


I spent many hours quietly reading while my brother napped in his hospital bed. Sometimes we would talk. His frustration increased as his efforts to get back home were thwarted. When he was finally brought to a nursing home nearby, my sister-in-law and I coordinated our visits in order to make sure he had companionship for most of the day. He and I watched old Hollywood classics together. We even laughed our way through a cooking competition for kids one Saturday. Sometimes he would tease me and call me by my childhood nickname. Sometimes he would call himself "Frankenstein", reaching a hand up to touch the ragged scar that extended across his shaved scalp, picking at the staples that held the edges of flesh together. That just about broke my heart.


So many emergencies. So many phone calls. Can you come? Something's wrong. He's confused...unresponsive...out of it...can't speak...feverish. I would drop everything, hop in the car, and hit the highway. I thought we'd seen it all, but I was wrong. One day he was making great strides, the next, disaster struck. I was at a medical appointment with my dad when my cell phone, set on vibration, startled me.


"Can you come here right away? Your brother's weak and they're taking him back to the hospital."
 I could hear the worry in my sister-in-law's voice. This was life or death. Despite having to drive my dad home, I still made it to the hospital before the ambulance did. As my sister-in-law climbed down from the front seat and the doors in the back swung open to disgorge the stretcher carrying my brother, she burst into tears. This just might be the end for him.


Pneumonia. That silent killer of the weak, the frail. No wonder he wasn't thriving after his latest round of surgery. The emergency room physicians conferred, tested his blood, and pumped him full of antibiotics and steroids. Within a few days, he was sent back to the nursing home. The physical and occupational therapists worked hard to help him regain the ground he lost, but some days, the confusion was just too much for him. He was so easily fatigued. All he wanted was to go home again. He wanted it so badly, he tried to get out of bed, even though his poor body wasn't strong enough to stand alone. And so he fell, over and over again -- despite all the safeguards. He was desperate to get out of there, to get back to the lake house where he belonged.


One day when I was sitting with him, he had a seizure. It was his second of the day. This time I was the one to call my sister-in-law to meet us at the hospital. It was my turn to follow the ambulance through bumper-to-bumper traffic, praying as I maneuvered through the maze of vehicles.


"Boy, you're a really good driver. A really good driver!" The paramedic gave me a big grin as we waited in the hospital corridor for my brother to be admitted to a treatment room. Mikal told me most people don't keep up as well as I did. My prowess behind the wheel was impressive. What could I say? I had been doing this for too long now. I couldn't forget that this might be the last time I saw him. Of course I'm a really good driver. I have to be. I'd never forgive myself if he died alone, surrounded by strangers. That's his biggest worry.


In the end, my brother managed to improve enough to be discharged from the nursing home. He rode the new outdoor stair lift up to the deck for the first and only time. He had a few contented sips of beer at sunset as he and his wife sat under the emerging stars. Day slipped away and night sauntered in. He was home where he wanted to be. No more hospitals. No more nursing homes. That was a promise. From now on, it was his choice what he wanted to do.


"Do you want more dumplings?" his wife asked him the next night, as he lay propped up in his hospital bed. I sat at his side, watching as he wordlessly opened his mouth to eat. His lovely blue eyes studied the face he loved so much, drinking in every smile, every grin, every glance that came his way. Her voice was tender as she kept up a cheerful conversation, reminding him of their adventures together. "Remember that time we went hiking, lovie? We were on the trail...."


After more than a year of waging war against the demon that invaded his body, the battle weary soldier had returned to the one place he loved with all his heart and to the woman he adored above all else. He was safe once more, surrounded by people who loved him, who protected him as best we could. It was time to go while the getting was good. It was time for him to find peace. After his heart stopped beating, we sat with his body, still not ready to let go.


Not long after my brother left the lake house on his final journey to the funeral home, I heard a loud thump in the middle of the night. Moments later, my father called out to me urgently. I bolted to my feet and threw open the door, stunned by the sight of my father in the bathroom doorway. Bright red blood dripped from a gash in his arm, the droplets splashing down onto the floor. "I tripped over my walker...."


My heart pounded as I tried to stem the flow of blood. I thought I had seen the end of the frantic trips to the emergency department of the hospital, but I was wrong. Boy, oh boy, was I wrong! Oh, crap! Here we go again!


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Sara M. Barton is the author of several mystery series. She's also known as the Practical Caregiver. You can find her cancer blog at www.practicalcaregiver.org.  You can find advice for family caregivers at The Practical Caregiver Guides.