Monday, May 16, 2016

Chapter Eight, Part 1: It's Not Your Time

When I arrived at the hospital that day, I hurriedly made my way to the oncology floor.  When I rounded the corner and entered the room, the transformation in Dad shocked my system. Seeing him there, with his neck so incredibly swollen, fighting tears and with so much fear in his voice, there was no denying that Dad was in great peril and so, so vulnerable.  The wheels were in motion to figure out what was going on that had caused this decline and this pain, but I was astounded at how slowly those wheels were turning. Blood work had been sent to the lab; they had given Dad some pain medication, but it was obviously not working at all.  

In pain and scared, Dad was suffering, and it was as if the nurses who were buzzing around doing everything BUT helping him were oblivious to the depth of that suffering.  I wanted to punch someone, I wanted to collapse in tears, I wanted to throw something or to throw up, I wanted so much to find something to do to help and to protect the man that I loved so very much.  

Finally the oncologist arrived; he came in with the lab results in his hands and told us that Dad’s immune system was almost non-existent.  “A plummet in blood count numbers doesn’t typically happen with the treatment protocol he’s on,” he said, but IT HAD.  The doctor wanted more blood work, a CT scan, and an MRI to be done to see what was going on.  He said he was putting rush orders in for consults from neurosurgery and infectious disease and for pain meds along with steroids and anti-seizure drugs to be administered, and he told us that he would call the room when the results of the tests were in.

After another half hour or so ticked by with Dad still in blatant distress, I went to the nurses’ station and was told that the pain meds were still en route from the lab.  With every ounce of patience I could summon, through gritted teeth and with fists clenched so tightly I left fingernail marks in my own palms, I asked for a RUSHED rush and went back to wait in the room with Dad, Mom, and my sisters.  At grueling long last, the nurse came in to add the medicine to the IV, and less than two minutes later Dad was in such a sedated sleep that his respiration rate was precariously low.  The nurse set up an oxygen tube at the edge of his nose and left the room.  

While Dad slept, we took turns watching over him and making phone calls in the hallway to update the rest of the family.  When he woke up about an hour later, he said he had had a terrible dream in which he was in a little room like at a doctor’s office with the door closed.  Dad said that in the dream, someone in the hallway was going door-to-door, knocking on some doors and skipping others, and he knew that the people in the rooms with the doors that were knocked on were going to die right then.  Dad said he was so afraid that his door was going to be knocked on but that he wasn’t ready to die.  Terrified, he waited, but the knock didn’t come.  He said it was really cold there and that he hoped that when he did die that it wasn’t scary and cold.  He said he didn’t want to die because he didn’t think we would know where to find him and he didn’t want to be lost. 

With tears in our eyes and our hearts in our throats, we told him that we were going to find out why he was so sick and then we were going to get him the medicine he needed to get better.  “It’s not your time, Dad,” I said insistently, desperately, with tears running down my face.

A few minutes later, the neurosurgeon (a different one from the one who had done Dad’s surgery nine weeks before) came in to escort Dad to Radiology to get a CT scan.  Since I’d gotten Jennifer’s call the afternoon before after Dad’s first big fall, I thought a lot about the possibility that Dad had had a stroke, which was one of the risks of Avastin, and evidently that was being considered by the team at the hospital as well.  

While Dad was away, the nurse came in to tell us that we were being moved into a larger room across the hall, and so we moved the few things we had with us and continued our wait in the new room.  Less than 30 minutes later, a technician wheeled Dad in his hospital bed down the hallway.  The guy must not have gotten word about our being transferred to the new room, though, because he passed right by the doorway of the room where we were and then started turning the bed to get it into the room where we’d been previously.

“We’re across the hall now,” I leaned out and told the tech, who said, “Is this Bullard?  I have the Bullard guy here.”  He pronounced our last name like the word “bullet,” though, and Dad, who looked to be sleeping until that point, opened his eyes wide in fear and said, “What?  I’ve been shot in the head by a bullet?”  Not understanding what Dad was saying, the tech asked, “What?” and, trying to get clarification on what he thought had been said before, Dad kept asking “What???” in response.  It took several minutes of explaining by my mom, my sisters, and me and the nurse to calm him down so that he could understand that he hadn’t been shot.

The nurse got Dad hooked up to the monitor wires and the IV lines again, and then we heard the phone ring in the empty room across the hall.  Thinking that it was the oncologist calling the report the results of the CT scan to us, I dashed across to answer but didn’t make it in time.  

Several minutes later, another nurse came down from the nurses’ station with the news that the oncologist had been trying to call and wanted us to know that, although the report from CT said that Dad had had great difficulty “holding still” during the scan, they felt the scan was accurate and a stroke had been ruled out.  “The doctor said it could be new tumor growth,” the nurse reported, “but he feels like it’s more likely some sort of infection.” 

Over the next few hours, my mom, my sisters, and I tried to keep Dad’s fear and his pain at bay; the sedative that separated him from his pain also affected his respiration rate, which made it necessary for him to have the oxygen tube in his nose, which appeared to irritate him greatly even in a sedated state.  He had a low-grade fever and looked flushed, but he said he felt like he was freezing.  His neck was swollen so much that he didn’t even look like himself, and it made him yell out in agony whenever the bed was jostled or a well-meaning nurse or nursing assistant adjusted the pillows under his head.  It seemed like having a cold cloth on his forehead and having us hold his hands helped as much as anything else, which was very little.  We were struggling to try to find a way to help him, but the only thing really to do was to wait.

Later that day, the Infectious Disease doctor came by and said they needed to do yet more blood work to run some cultures to figure out what was going on.  Dad’s white count was apparently very high, which signaled infection.  I pressed her for a guess as to the type of infection, and she said, “I think it’s meningitis.  What we don’t know is if it’s fungal, viral, or bacterial.  If it’s viral, the four of you have been exposed and you will have to be in isolation for several days before we can make sure you won’t get it too.”  

We looked at each other with wide panicky eyes, and then I asked, ”Can we stay with him while we’re in isolation?”

“I don’t see why not, since the cross-exposure will have already occurred,” she said.  

My sisters, Mom, and I looked at each other again and wordlessly formulated the only plan that we could at that point: batten down the hatches and hold on.

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